Monday night Dr. Rick declared me in another flare, with the probable lesion in the thoracic spine. I began steroids on Tuesday--five days of 100 mg prednisone. Dr. Rick did not want to go higher due to my history of bad reactions.
Yesterday afternoon, the precipitating symptom was much better, so I guess the steroids are working. The symptom was the MS hug, which sounds much better than it is. Here is one woman's experience with it. My experience was a band of cramping, spasming, tight pain around my back and my right side, at about bra band level. Under the shoulder blades. Oh, the pain.
It began on Friday. I took Flexeril and used a heating pad, which did not help. On Monday, I saw my internist, Dr. Rob, who did not see how it could be related to MS. He wrote me a prescription for Soma, which did not help at all, and sent me to physical therapy. I decided to go to a different place, because I did not really care for my last PT company. I visited my new PT, Kate, on Tuesday. She mostly hid her horror at the lack of motion range in my back and shoulder flexors. I will see her 2-3 times a week now. Or her partner, Dave. I am looking forward to seeing if there is a change when I go today, since the prednisone has started helping.
One good thing that came out of my visit to Dr. Rob was that he changed my sleeping medicine. I am waking up 5-10 times per night on Ambien CR 12.5 mg, and he changed me to Lunesta 3 mg. I got four hours straight the first night on it and only woke up 3 times total, so that was great. But them the steroid insomnia fought against it. Last night I took Lunesta and Benadryl at 10:15 pm, slept 11:00-3:30, took Ambien CR at 4:30, and got up at 8:00. I was still so tired. I cleared my schedule for today, except for PT.
The other ill affect the steroids are having, which began yesterday afternoon, is anxiety. Bordering on panic sometimes. Not for any reason, just there. I called Dr. Rob to ask for a prescription of something, anything. I have not heard back, but he may have just sent something in. I guess I will stop by the pharmacy when I go out for PT.
Not that I want to go anywhere. I just want to snuggle into a blanket and sleep for a few weeks. I hate flares.
Showing posts with label Dr. Rick. Show all posts
Showing posts with label Dr. Rick. Show all posts
Thursday, April 4, 2013
Wednesday, February 20, 2013
SCS Trial
Today I had a spinal cord stimulator trial device placed. It provides electrical stimulation to my spine, and the hope is that it will block the pain signals.
This was the most painful procedure I have ever had--unexpectedly so. I knew that it was similar to a lumbar puncture, which I have had before. That was not fun but honestly not terrible. The recovery was worse than the procedure, since I developed a CSF leak with the attending spinal headache and had to have a blood patch.
The SCS implantation was similar to the LP in that they went into my spine with me awake. But I did not realize that advancing the lead would be so painful. Not looking forward to having that again.
And there is a good chance I will have it again. If the trial is successful (reduces my pain and helps me be more functional), I will get a permanent device. Either way, this trial lead will be removed on Monday.
Despite the ugliness of the pain, I totally rocked the procedure today. They gave me a bit of Versed toward the beginning, but it made me dizzy, so they did not give me more. I wanted to be alert anyway, so I was fine with not having more.
The first time the needle with the lead was advanced, it was so painful that tears sprang to my eyes. One of the nurses encouraged me to breathe; I did and it did not really help. All of a sudden I realized that the pain was from the needle bumping around in there (exaggerating a bit), and I knew that the best thing to do was keep still and breathe shallowly. That helped! I also realized that the pain was worst when the needle was moving, that it would subside when the desired target was reached. So I tried to be patient and keep as still as possible.
The nurses and fellow kept saying afterward how amazed they were at how I handled everything. They said, "We have had football players and all kinds of tough guys in here, and they were begging for every drug in the book. You were incredible!" Yes, yes, I am awesome, I know...
I did not want to be heavily sedated, because a. I needed a clear head to give the detailed descriptions they needed (lead placement depended on my feedback), and b. I knew that I would feel better if I were aware of the technical things they were saying. I know myself well enough to recognize that intellectualizing helps me not be anxious. And it worked. When they were counting up from my sacrum, I knew that the idea was to try the lead at at least T8, so I was paying attention to the counting. And I was listening to the head honcho asking the Medtronics rep for a standard lead rather than a compact lead. I liked hearing those things.
Although the procedure was awful, it was made less traumatic by my confidence in the team. Everyone was great. I knew that my doc was at the top of his game, and the nurses were so sweet. Of course the Medtronics rep was motivated to make sure that the lead was well placed, because if the trial is a success, Medtronics gets a sale. The one thing I was not crazy about was that a fellow was doing the procedure, but he seemed really competent. The head honcho guided him a few times. It was fine.
Gosh, I am tired. I did not sleep well last night. So much has been going on! I have a Cliffs Notes I made for my internist, so I will paste that here. One thing to mention is that since I wrote the Cliffs Notes last month, I have begun seeing a new sleep specialist. I still have the other one for the medical side of things. The new guy, whom I will call Dr. Eric, is a psychologist specializing in behavioral sleep medicine. I have seen him twice, and I like him.
I am still on Aubagio 14 mg daily. No issues except a bunch of eczema, which is not normal for me. I have a steroid cream for it. Small price to pay if it helps my MS.
This was the most painful procedure I have ever had--unexpectedly so. I knew that it was similar to a lumbar puncture, which I have had before. That was not fun but honestly not terrible. The recovery was worse than the procedure, since I developed a CSF leak with the attending spinal headache and had to have a blood patch.
The SCS implantation was similar to the LP in that they went into my spine with me awake. But I did not realize that advancing the lead would be so painful. Not looking forward to having that again.
And there is a good chance I will have it again. If the trial is successful (reduces my pain and helps me be more functional), I will get a permanent device. Either way, this trial lead will be removed on Monday.
Despite the ugliness of the pain, I totally rocked the procedure today. They gave me a bit of Versed toward the beginning, but it made me dizzy, so they did not give me more. I wanted to be alert anyway, so I was fine with not having more.
The first time the needle with the lead was advanced, it was so painful that tears sprang to my eyes. One of the nurses encouraged me to breathe; I did and it did not really help. All of a sudden I realized that the pain was from the needle bumping around in there (exaggerating a bit), and I knew that the best thing to do was keep still and breathe shallowly. That helped! I also realized that the pain was worst when the needle was moving, that it would subside when the desired target was reached. So I tried to be patient and keep as still as possible.
The nurses and fellow kept saying afterward how amazed they were at how I handled everything. They said, "We have had football players and all kinds of tough guys in here, and they were begging for every drug in the book. You were incredible!" Yes, yes, I am awesome, I know...
I did not want to be heavily sedated, because a. I needed a clear head to give the detailed descriptions they needed (lead placement depended on my feedback), and b. I knew that I would feel better if I were aware of the technical things they were saying. I know myself well enough to recognize that intellectualizing helps me not be anxious. And it worked. When they were counting up from my sacrum, I knew that the idea was to try the lead at at least T8, so I was paying attention to the counting. And I was listening to the head honcho asking the Medtronics rep for a standard lead rather than a compact lead. I liked hearing those things.
Although the procedure was awful, it was made less traumatic by my confidence in the team. Everyone was great. I knew that my doc was at the top of his game, and the nurses were so sweet. Of course the Medtronics rep was motivated to make sure that the lead was well placed, because if the trial is a success, Medtronics gets a sale. The one thing I was not crazy about was that a fellow was doing the procedure, but he seemed really competent. The head honcho guided him a few times. It was fine.
Gosh, I am tired. I did not sleep well last night. So much has been going on! I have a Cliffs Notes I made for my internist, so I will paste that here. One thing to mention is that since I wrote the Cliffs Notes last month, I have begun seeing a new sleep specialist. I still have the other one for the medical side of things. The new guy, whom I will call Dr. Eric, is a psychologist specializing in behavioral sleep medicine. I have seen him twice, and I like him.
I am still on Aubagio 14 mg daily. No issues except a bunch of eczema, which is not normal for me. I have a steroid cream for it. Small price to pay if it helps my MS.
1/14/13
Still experiencing frequent MS flare ups. Currently:
·
Right side weakness (mild)
·
Burning pain—legs (above knees), hips, pelvis,
trunk
·
Difficulty sleeping
o Fall
asleep fine at night
o Awaken
5-10 times each night, fall asleep quickly each time
o Daytime
sleepiness, occasionally falling asleep during the day
·
Fatigue
MS Clinic – Dr. Rick at
·
11/9/12
Discontinued study medication (probably Avonex) due to lack of efficacy
·
Continuing in the study with lab work, exams,
MRIs, etc.
·
12/7/12
Began Aubagio 14 mg daily
Sleep Clinic – Dr. Goola at
·
9/22/12 Difficulty
sleeping began at the same time as a flare up
·
9/25/12-11/15/12
Dr. Rick prescribed Ambien CR 12.5 mg, slept 5-6 hours straight
·
11/14/12
First appointment with Dr. Goola
·
11/25/12
Sleep study
o No
apnea
o Identified
disordered sleep architecture – frequent awakenings, high percentage levels 1
and 3, low percentage REM.
·
1/4/13
Appointment, received lab results from 11/17/13
o Anemia
and fatigue dx
o Thyroid
and CBC normal
o Referred
to sleep behavioral health program at Bayview
o Recommended
start taking iron
·
4/26/13
Next appointment
Pain Clinic – Dr. Chris at
·
12/27/12 Recommended
spinal cord stimulator from Medtronics
·
1/8/13
Received psych clearance from Dr. Sally
·
In process of scheduling appointment for trial
of SCS
Oral Surgery – Dr. Ned in
·
12/21/12
Post and crown fell out
·
1/7/13
Recommended implant, sinuses and bone look healthy
·
1/16/13
Appointment for implant
Psychology – Ruth in
·
Continuing to see her every 2-3 weeks for
counseling
Thursday, December 6, 2012
Hello Aubagio!
I said a not-terribly-fond farewell to Avonex a month ago, and today I received my first shipment of Aubagio. I guess I should not have been surprised at the small package, but of course it is only a few pills. Exactly 28, to be highly exact. I find that annoying, because a prescription should be for 30 pills--30 days. With 28 pills in the pack, I will need to refill it more often, which means paying a bit more each year. Whatever, at least I have insurance.
If any of you MSers stumbles across this blog, it took exactly three weeks for my insurance to approve Aubagio.
I am excited to begin taking this medication tomorrow! And I have an appointment at the MS clinic. Good timing. If I have any odd side effects, I will be there. But I doubt anything serious will happen, because Aubagio is not associated with serious, acute side effects.
My appointment tomorrow is the kind I like yet do not like. I will have neuro exams by my neurologist, Dr. Rick, and by someone else. I have not met him (or her?). I hope he is more personable than the Asian chick who freaked out because I told her that she had started her period... on her skirt. Hehe, that loosened her up a bit. I also have cognitive testing (brief) and the usual bloodwork. Also questionnaires. All of that will allegedly by done in two hours. Bulllll.....
I like to have the testing done, because sometimes I surprise myself with what I can and cannot do. I am introspective and analytical, so I nerd out on data. But I do not like this kind of visit, because they will probably make me do the walk. MSers know this one: walk until you go 500 meters or drop, whichever happens first. And I have made the 500 meters every time, but it is by the skin of my teeth. I am totally wiped out after that. That is when I CBT myself: I can stay if I am too tired to drive. But of course I never stay, because when I am worn out, I just want to lie on my couch at home.
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I am excited to begin taking this medication tomorrow! And I have an appointment at the MS clinic. Good timing. If I have any odd side effects, I will be there. But I doubt anything serious will happen, because Aubagio is not associated with serious, acute side effects.
My appointment tomorrow is the kind I like yet do not like. I will have neuro exams by my neurologist, Dr. Rick, and by someone else. I have not met him (or her?). I hope he is more personable than the Asian chick who freaked out because I told her that she had started her period... on her skirt. Hehe, that loosened her up a bit. I also have cognitive testing (brief) and the usual bloodwork. Also questionnaires. All of that will allegedly by done in two hours. Bulllll.....
I like to have the testing done, because sometimes I surprise myself with what I can and cannot do. I am introspective and analytical, so I nerd out on data. But I do not like this kind of visit, because they will probably make me do the walk. MSers know this one: walk until you go 500 meters or drop, whichever happens first. And I have made the 500 meters every time, but it is by the skin of my teeth. I am totally wiped out after that. That is when I CBT myself: I can stay if I am too tired to drive. But of course I never stay, because when I am worn out, I just want to lie on my couch at home.
Sunday, November 11, 2012
Not Crazy
On Friday, Dr. Rick asked me about my mood, as they delicately call it. I told him that I wish I could die but do not have plans to hurt myself. He asked why, and I explained that I am sick and in pain, and that I cannot do most of the things I like to do. Dr. Rick wanted to admit me to the hospital, because he wants psychiatry to see me, and being admitted is the only way to make that happen quickly. He also wanted to have my pain monitored and try to get it under control, but I think mainly he wanted to prevent me from killing myself.
I was adamant that I do not want to be hospitalized.
1. I already have trouble sleeping. The last thing I need it machines beeping and people making noise 24/7.
2. Dr. Rick is changing my pain meds (gabapentin to Lyrica). The pain is one of the reasons I want to die, so if that gets better, I will not want to die. I pointed out that my severe depression began immediately after Alyssa told me that there was nothing to do for my fatigue and little to do for my pain. (I did not dime her out but said "at my last appointment I learned that...") Fix my pain!
3. I would be anxious in the hospital, because I do not trust them. Doctors, technicians, etc. I do not trust that they are identifying my problems correctly or that they will listen to me. Or that I will be able to express myself well.
4. I would be bored in the hospital. There is nothing to do there! I can kill a lot of time on google, but not that much.
5. I cannot afford to miss work.
6. I do not want a psych label, because I do not want doctors to think that my physical problems are in my head. I have enough trouble getting doctors to listen; I do not need that label following me.
I did not tell Dr. Rick all of that, just reasons 1 and 2. Dr. Rick stared at me intently, obviously trying to decide whether to trust me. He decided that he could. Maybe.
Dr. Rick pointed out that this is a vulnerable time. I am changing six medications this week, all of which can have psychoactive effects. Also, I have reacted poorly to medications in the past. Dr. Rick said that he would allow me to make these medication changes on an outpatient basis only if I maintain strong communication with them. He wrote down the titration directions for gabapentin and Lyrica, along with the other changes. He trusted me to understand what to do, but he did not completely trust me to tell them if my mood dropped. I had to promise to call him if I felt the urge to kill myself, and he wrote down his cell number on the directions.
I already had it.
I have never used his cell number, because I have never feel like my problems are major emergencies. I cannot imagine calling if I wanted to kill myself. A person who wants to die is not going to call. A person who calls is looking for attention. I have engaged in attention-seeking behavior when I was young, but not anymore.
My shrink made the same request weeks ago, that I call her if I want to die. Of course I did not. How would it help? She cannot make the pain and fatigue go away. She did say that she knows someone who is truly suicidal would not call, because they want to die, not be talked out of it.
I would consider calling a friend, I guess. Maybe the MS Society hotline. Maybe a suicide hotline. Maybe Alyssa. Right now I have no plans to kill myself, mainly because I do not want to scar the person who finds me. And I do not want to leave my bug alone.
The bottom line is that I am clearly of sound mind, so Dr. Rick could not admit me against my wishes. He wanted to see me back in two weeks, though. And he insisted that I make an appointment with a psychiatrist. He also referred me to a pain specialist.
Wednesday, October 24, 2012
First Days on Cymbalta
Cymbalta has been a little rough. Insomnia breaking through the Ambien, anxiety, lack of appetite, and a touch of nausea. The nausea has been better today. I decided to take the pill in the morning instead of at night, hoping that helps with the insomnia. So I will skip it tonight and take it tomorrow morning.
The anxiety yesterday morning, following the first Cymbalta dose, was insane. No letup from 6:00 AM to about 9:30 AM, off and on after that. It has been tons better today. It hits, but not as badly. Experiencing this anxiety was not enjoyable--I get nervous about things sometimes, but not anxiety like this. It reminded me of Nuvigil, but the anxiety with Cymbalta lasted longer.
My doctor called and emailed yesterday to encourage me to go to the ER. No thanks. I have been sick for weeks--why now? Only because I said that I want to kill myself. I do not see what they could do in the hospital that my doctor cannot do by calling my pharmacy.
I got diagnosed with a yeast infection today. Bad one. I am totally blaming this on the cipro I took a couple of weeks ago.
If I can get over the insomnia, Cymbalta might help. I really want to give it a good chance, because there are not many options left for my burning pain. Well... basically none. When I spoke with my nurse on Monday, she asked when my sleep study is. Oh, sleep study? I do not have one scheduled! Just a consultation! Three more weeks until that.
Last night I took Ambien CR, woke up three times, could not go back to sleep after 6:00 AM, took 10 mg of regular Ambien at 6:30, and got up two hours later. Two hours on 10 mg of Ambien. Most people get eight hours. Even I usually get three to four hours on that dosage. Cymbalta definitely affected my sleep both nights. Hopefully tonight will be better. My sleep problem is bad enough already!
The anxiety yesterday morning, following the first Cymbalta dose, was insane. No letup from 6:00 AM to about 9:30 AM, off and on after that. It has been tons better today. It hits, but not as badly. Experiencing this anxiety was not enjoyable--I get nervous about things sometimes, but not anxiety like this. It reminded me of Nuvigil, but the anxiety with Cymbalta lasted longer.
My doctor called and emailed yesterday to encourage me to go to the ER. No thanks. I have been sick for weeks--why now? Only because I said that I want to kill myself. I do not see what they could do in the hospital that my doctor cannot do by calling my pharmacy.
I got diagnosed with a yeast infection today. Bad one. I am totally blaming this on the cipro I took a couple of weeks ago.
If I can get over the insomnia, Cymbalta might help. I really want to give it a good chance, because there are not many options left for my burning pain. Well... basically none. When I spoke with my nurse on Monday, she asked when my sleep study is. Oh, sleep study? I do not have one scheduled! Just a consultation! Three more weeks until that.
Last night I took Ambien CR, woke up three times, could not go back to sleep after 6:00 AM, took 10 mg of regular Ambien at 6:30, and got up two hours later. Two hours on 10 mg of Ambien. Most people get eight hours. Even I usually get three to four hours on that dosage. Cymbalta definitely affected my sleep both nights. Hopefully tonight will be better. My sleep problem is bad enough already!
Monday, October 22, 2012
Thrust In Your Sickle
When I have not blogged in a while, it usually means things are really good or really bad. Things are not good.
Let us discuss death. Just entertain the idea. It sounds so good. The problem is that there is no fool-proof method. Chances are good that I would end up hurt but not dead. I already know that situation sucks.
I contacted my doctor and nurse last Wednesday to let them know that I have suicidal ideations, as my shrink advised. On Friday, Alyssa emailed to say that she was sick with pneumonia and hoped Dr. Rick had contacted me, that she hoped to be well enough to return to work Monday. Basically I told her whatever. What if you felt that way every day and had to work anyway? Maybe it was not fair, but I am having trouble feeling sympathy for normal people who get sick. They are sick temporarily, and there is no way it is as painful as my everyday pain. Whatever, I have anger issues lately. I blame it on the grieving process. It has been a year, and I have felt denial, bargaining, depression, and sometimes even acceptance, but this is the first time I have felt anger.
Alyssa called later on Friday and left me a message that she had sent several messages to Dr. Rick, and that she understands that I am dealing with a lot. Dr. Rick called and said to increase my tramadol to 50 mg (it already is! he seemed to think 25 mg), and he offered Cymbalta. Basically he said have a good weekend.
Ugh, yes, he called right before he left for the day. And I missed his message by minutes. Figures! Today Alyssa followed up with me. She said how she is worried about me, that I am not doing well, that she and Dr. Rick discuss me. I wanted to say That is nice, but it does not change anything for me. Alyssa tried to figure out how serious I am about dying and if I have a plan. And she called in my Cymbalta prescription (which turned out to be unreasonably expensive, just like Ambien CR).
Alyssa said that if the pain is bad enough to die, I should go to an ER. They could admit me and get the pain and "mood" under control. What do I look like, a sucker? An ER is not going to help unless you have a bone sticking out somewhere. Besides, pain and psych admissions sound like a great way to ruin a career. Maybe I would consider it for pain--I had never thought of that before. Hospitals are for really sick people, not me. But I think maybe I am really sick. However, I would never go to an ER if I wanted to kill myself. Duh, suicidal people do not want help. Going to an ER saying that you want to kill yourself is probably attention-seeking behavior.
Ah, here is something different: for the last two days, my left ear sounds crackly when my eustachian tubes open. (Yes, I know when my eustachian tubes open.. because I am that nerdy.) But it does not hurt. I suppose that I have fluid in my middle ear, but it is not infected. I do not think it is affecting the rest of my health, because my pain has actually been better the last four days. It is down to 7-8 a lot of the time. Right, that is a reduction!
Seriously, the thought of tomorrow is too much sometimes.
Let us discuss death. Just entertain the idea. It sounds so good. The problem is that there is no fool-proof method. Chances are good that I would end up hurt but not dead. I already know that situation sucks.
I contacted my doctor and nurse last Wednesday to let them know that I have suicidal ideations, as my shrink advised. On Friday, Alyssa emailed to say that she was sick with pneumonia and hoped Dr. Rick had contacted me, that she hoped to be well enough to return to work Monday. Basically I told her whatever. What if you felt that way every day and had to work anyway? Maybe it was not fair, but I am having trouble feeling sympathy for normal people who get sick. They are sick temporarily, and there is no way it is as painful as my everyday pain. Whatever, I have anger issues lately. I blame it on the grieving process. It has been a year, and I have felt denial, bargaining, depression, and sometimes even acceptance, but this is the first time I have felt anger.
Alyssa called later on Friday and left me a message that she had sent several messages to Dr. Rick, and that she understands that I am dealing with a lot. Dr. Rick called and said to increase my tramadol to 50 mg (it already is! he seemed to think 25 mg), and he offered Cymbalta. Basically he said have a good weekend.
Ugh, yes, he called right before he left for the day. And I missed his message by minutes. Figures! Today Alyssa followed up with me. She said how she is worried about me, that I am not doing well, that she and Dr. Rick discuss me. I wanted to say That is nice, but it does not change anything for me. Alyssa tried to figure out how serious I am about dying and if I have a plan. And she called in my Cymbalta prescription (which turned out to be unreasonably expensive, just like Ambien CR).
Alyssa said that if the pain is bad enough to die, I should go to an ER. They could admit me and get the pain and "mood" under control. What do I look like, a sucker? An ER is not going to help unless you have a bone sticking out somewhere. Besides, pain and psych admissions sound like a great way to ruin a career. Maybe I would consider it for pain--I had never thought of that before. Hospitals are for really sick people, not me. But I think maybe I am really sick. However, I would never go to an ER if I wanted to kill myself. Duh, suicidal people do not want help. Going to an ER saying that you want to kill yourself is probably attention-seeking behavior.
Ah, here is something different: for the last two days, my left ear sounds crackly when my eustachian tubes open. (Yes, I know when my eustachian tubes open.. because I am that nerdy.) But it does not hurt. I suppose that I have fluid in my middle ear, but it is not infected. I do not think it is affecting the rest of my health, because my pain has actually been better the last four days. It is down to 7-8 a lot of the time. Right, that is a reduction!
Seriously, the thought of tomorrow is too much sometimes.
Thursday, August 30, 2012
Nuvigil Trial, and Not Suicidal
Although I had a bad reaction to Nuvigil last year, I got permission from my neurologist to try half a pill today. My fatigue is just out of control. Nuvigil is basically legal speed. Kind of like Ritalin, I guess. Well, I did not have a bad reaction to Nuvigil today. I am not sure it even worked. Maybe I should check the expiration date. It is a sample pack that nutty Dr. Gabby gave me a year ago.
I had a so-so morning. Not good but not terrible. However, I was sitting down giving tests most of the morning, and I was in my own classroom.
I got worse toward the end of the morning and continued to decline all afternoon. At one point I stood and talked to a colleague for about 10 minutes, and I seriously felt like I might pass out. I was dizzy, had occasional waves vertigo, even some nausea in the afternoon. I have rarely had problems with nausea with my MS fatigue, but I know others do. That was not fun. But vertigo is worse.
My left foot is worse today.
When I had to go up to the office toward the end of the day and meet with my boss, I guess I used up all of my energy to walk normally and explain things to her. After that, I was pretty well spent. It is hard to describe how poorly I felt. Feel. I have only been home for 30 minutes, so I am not even close to recovering. Still feels like my head might fall off.
I am so frustrated. There are many things I enjoy and want to do, but I cannot do them. Being sick every day is horrible. MS fatigue is horrible. I had no idea a body could feel this way--and I have had gallbladder attacks and kidney stones. MS fatigue is worse. At least the gallbladder attack eventually ends, and the kidney stone eventually passes. This MS thing is not going away, and it is getting worse, not better.
We work every day to eat, be clothed, buy things we want, have a home, etc. It is worth spending many hours each week doing something we do not want to do (generally speaking) in order to do things you want to do sometimes. On the weekends. In the evenings. Everyone has to decide how much "not fun" is worth "fun." Some people want to work just enough to have a modest home and stay mostly out of debt. Others are willing to work 80-hour weeks to have a nicer house or drive a fancy car. The cost-benefit analysis is a personal thing.
I wonder whether it is worth living this way, only feeling alright occasionally. And rarely, so rarely, feeling good. If I thought this is it, that life ends with death, I would think that it is probably worth it. Maybe. But I already have my calling for the spirit world, and it sounds great--a whole lot better than what I have going on here.
I am not suicidal; I just want to die.
I had a so-so morning. Not good but not terrible. However, I was sitting down giving tests most of the morning, and I was in my own classroom.
I got worse toward the end of the morning and continued to decline all afternoon. At one point I stood and talked to a colleague for about 10 minutes, and I seriously felt like I might pass out. I was dizzy, had occasional waves vertigo, even some nausea in the afternoon. I have rarely had problems with nausea with my MS fatigue, but I know others do. That was not fun. But vertigo is worse.
My left foot is worse today.
When I had to go up to the office toward the end of the day and meet with my boss, I guess I used up all of my energy to walk normally and explain things to her. After that, I was pretty well spent. It is hard to describe how poorly I felt. Feel. I have only been home for 30 minutes, so I am not even close to recovering. Still feels like my head might fall off.
I am so frustrated. There are many things I enjoy and want to do, but I cannot do them. Being sick every day is horrible. MS fatigue is horrible. I had no idea a body could feel this way--and I have had gallbladder attacks and kidney stones. MS fatigue is worse. At least the gallbladder attack eventually ends, and the kidney stone eventually passes. This MS thing is not going away, and it is getting worse, not better.
We work every day to eat, be clothed, buy things we want, have a home, etc. It is worth spending many hours each week doing something we do not want to do (generally speaking) in order to do things you want to do sometimes. On the weekends. In the evenings. Everyone has to decide how much "not fun" is worth "fun." Some people want to work just enough to have a modest home and stay mostly out of debt. Others are willing to work 80-hour weeks to have a nicer house or drive a fancy car. The cost-benefit analysis is a personal thing.
I wonder whether it is worth living this way, only feeling alright occasionally. And rarely, so rarely, feeling good. If I thought this is it, that life ends with death, I would think that it is probably worth it. Maybe. But I already have my calling for the spirit world, and it sounds great--a whole lot better than what I have going on here.
I am not suicidal; I just want to die.
Thursday, February 9, 2012
Getting Forgetful
I forgot to blog the last two days!
Tuesday was one of the more painful days I have had. Burning pain in my skin. But spasticity was not bad. I was pretty darned tired. And I had PT.
Yesterday my pain was low. It was wonderful! I got some anaerobic exercise in the morning. And I had PT. PT has been good; I have not been kept waiting too much. Yesterday my left knee was bugging me again, and I had some trouble walking on the treadmill. Jackie the PT checked it out and found that the problem was not with the joint. My spastic quad muscles were not allowing my knee to work properly.
Today I had another less pain again. I was busy at work and came home pretty tired. I made myself a bit of dinner--boiled some ravioli--and totally wore myself out. I have been resting on the couch all evening and have no energy. But I was walking really well all day until I ran out of steam.
I had two weird forgetful moments today. A coworker told me that she was going to get her blood pressure checked, explaining that it had been up and down all day. A few minutes later, I looked around to find that she had vanished. I had absolutely no recollection of our earlier conversation and was really wondering where she was. I let it go. After five or ten minutes or working and idly wondering (as it is highly unusual for her to be gone), I asked another coworker where she was. Then I instantly remembered where she had gone.
The other example is that I had pills in my pocket. At first I thought they were my mid-afternoon dose of gabapentin, but then I realized that they were my breakfast pills, which I had forgotten to take. I took them around lunch time. Several hours later, as I was packing my things to leave, I remembered the pills and realized that I had not taken my mid-afternoon dose of gabapentin. I felt in my pocket for the three gabapentin pills, only to find that my pocket was empty. I panicked for a minute, wondering where the pills might have dropped out. During a meeting? Maybe I should look in the conference room. First I looked around my desk area. A few seconds into my search, I remembered that I had taken the pills in my pocket--and they were not gabapentin.
These little lapses in short-term memory happen to me all the time. They make me confused sometimes.
My dry mouth has been pretty bad. I emailed Dr. Rick today to let him know that I am throwing in the towel on amitriptyline. He is going to call in a prescription for another tricyclic anti-depressant, desipramine. I wonder if my pain will increase again when I stop taking the amtriptyline. I am not sure if it is helping or if my pain just happened to decrease yesterday and today.
I ordered an exercise ball and foam roller, which I am using in my PT sessions. I can use them for exercises at home.
Sensory:
Tuesday was one of the more painful days I have had. Burning pain in my skin. But spasticity was not bad. I was pretty darned tired. And I had PT.
Yesterday my pain was low. It was wonderful! I got some anaerobic exercise in the morning. And I had PT. PT has been good; I have not been kept waiting too much. Yesterday my left knee was bugging me again, and I had some trouble walking on the treadmill. Jackie the PT checked it out and found that the problem was not with the joint. My spastic quad muscles were not allowing my knee to work properly.
Today I had another less pain again. I was busy at work and came home pretty tired. I made myself a bit of dinner--boiled some ravioli--and totally wore myself out. I have been resting on the couch all evening and have no energy. But I was walking really well all day until I ran out of steam.
I had two weird forgetful moments today. A coworker told me that she was going to get her blood pressure checked, explaining that it had been up and down all day. A few minutes later, I looked around to find that she had vanished. I had absolutely no recollection of our earlier conversation and was really wondering where she was. I let it go. After five or ten minutes or working and idly wondering (as it is highly unusual for her to be gone), I asked another coworker where she was. Then I instantly remembered where she had gone.
The other example is that I had pills in my pocket. At first I thought they were my mid-afternoon dose of gabapentin, but then I realized that they were my breakfast pills, which I had forgotten to take. I took them around lunch time. Several hours later, as I was packing my things to leave, I remembered the pills and realized that I had not taken my mid-afternoon dose of gabapentin. I felt in my pocket for the three gabapentin pills, only to find that my pocket was empty. I panicked for a minute, wondering where the pills might have dropped out. During a meeting? Maybe I should look in the conference room. First I looked around my desk area. A few seconds into my search, I remembered that I had taken the pills in my pocket--and they were not gabapentin.
These little lapses in short-term memory happen to me all the time. They make me confused sometimes.
My dry mouth has been pretty bad. I emailed Dr. Rick today to let him know that I am throwing in the towel on amitriptyline. He is going to call in a prescription for another tricyclic anti-depressant, desipramine. I wonder if my pain will increase again when I stop taking the amtriptyline. I am not sure if it is helping or if my pain just happened to decrease yesterday and today.
I ordered an exercise ball and foam roller, which I am using in my PT sessions. I can use them for exercises at home.
Sensory:
-Pins and needles: 3
-Tingles: 0
-Dysesthetic pain: 5
-Paresthesias: 6, electricity crackling through my right foot (mainly)
-Tingles: 0
-Dysesthetic pain: 5
-Paresthesias: 6, electricity crackling through my right foot (mainly)
-Numbness: 3, still having tongue issues, mild fingertip issues, and of course the feet as always
-Vision: 2, up and down but generally better
-Nerve pain: 4
-Hearing: 1, sometimes I think I hear sirens... weird
Motor:
-Walking: 1 daytime, 5 evening
-Sore muscles: 1
-Fine motor: 3, tremor bugging me
-Weak muscles: 4
-Spasticity: 1
Cognitive:
-Processing: 0
-Memory: 1
-Attention: 0
-Confusion: 0
General:
-Fatigue: 4 day, 8 evening--"can't hold my head up" tired
-Balance: 2
-Sleep: 0
-Bladder: 2
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0
-Vision: 2, up and down but generally better
-Nerve pain: 4
-Hearing: 1, sometimes I think I hear sirens... weird
Motor:
-Walking: 1 daytime, 5 evening
-Sore muscles: 1
-Fine motor: 3, tremor bugging me
-Weak muscles: 4
-Spasticity: 1
Cognitive:
-Processing: 0
-Memory: 1
-Attention: 0
-Confusion: 0
General:
-Fatigue: 4 day, 8 evening--"can't hold my head up" tired
-Balance: 2
-Sleep: 0
-Bladder: 2
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0
Emotions: Fine. I handled a potentially stressful meeting well. But then I almost cried at a friend's email mentioning my MS and how you would never know I am in a lot of pain. That I hide it well. That makes two people who have said that to me today, that I hide it well.
Tuesday, January 31, 2012
Low On Drugs
I am on Vicodin, which feels remarkably like being on Benadryl. Why, one might ask? Because my dysesthetic pain was absolutely awful at 5:30 this morning, and then it kept coming back. Horrible. Seriously horrible. I emailed Dr. Rick, who had me come see him this afternoon. He prescribed amitriptyline and Vicodin.
Amitriptyline is an old anti-depressant that apparently is not really used an an anti-depressant anymore. It can help some people with nerve pain. Hopefully me. And hopefully without bad side effects. I just read some about it online... looks like my dosage is pretty low, nowhere close to what would be prescribed for depression.
I am supposed to take Vicodin as needed. I questioned dependence, but Dr. Rick said I would not become addicted. He is thinking of this as a way to get through coming down off steroids. (Because I told him that the pain began the day after my first course of steroids, and now it has worsened and added new territory while coming off my second course of steroids.) Also that I am using it to take the edge off pain. I don't know. But I have been in a lot of pain, so I am willing to give it a go.
Blurred vision is listed as a side effect of both amitriptyline and Vicodin. I did laugh a bit at that. My vision still stinks from the steroids. Dizziness and sedation are also listed under both. So we'll see. I was dumb, because I took the amitriptyline with dinner instead of an hour before bed. Ugh. Need to improve at following directions. My thinking/judgment was maybe not the best today.
So although I have taken both meds, I think the sedating effect I feel right now is probably from the Vicodin. I do not think the ami is going to work that quickly. And I only took 10 mg. Vicodin is a classic drowsy-maker, right? More likely that is the culprit right now.
So that kind of stinks. I absolutely could not take this and go to work. Too tired and dizzy--my balance is worse. Maybe I'll try cutting the pill in half next time. I am not sure it even helped with the pain. Well, I guess it helped. Just not a whole lot.
And Dr. Rick is still stumped on my vision problem. He told me to take 10 mg of prednisone today and tomorrow, then done. So I will end up skipping two days of 20 mg, which is what I would have taken today. Probably will not make much of a difference, but hopefully my eyes bounce back soon. It has not really bothered me, because I know where I am going here in town. But at one point today, I was looking for a building, and struggling with reading names and seeing numbers was frustrating. I think the only reason I am tolerating it well is because I assume that it will get better soon.
Well, on to my daily data:
Sensory:
Amitriptyline is an old anti-depressant that apparently is not really used an an anti-depressant anymore. It can help some people with nerve pain. Hopefully me. And hopefully without bad side effects. I just read some about it online... looks like my dosage is pretty low, nowhere close to what would be prescribed for depression.
I am supposed to take Vicodin as needed. I questioned dependence, but Dr. Rick said I would not become addicted. He is thinking of this as a way to get through coming down off steroids. (Because I told him that the pain began the day after my first course of steroids, and now it has worsened and added new territory while coming off my second course of steroids.) Also that I am using it to take the edge off pain. I don't know. But I have been in a lot of pain, so I am willing to give it a go.
Blurred vision is listed as a side effect of both amitriptyline and Vicodin. I did laugh a bit at that. My vision still stinks from the steroids. Dizziness and sedation are also listed under both. So we'll see. I was dumb, because I took the amitriptyline with dinner instead of an hour before bed. Ugh. Need to improve at following directions. My thinking/judgment was maybe not the best today.
So although I have taken both meds, I think the sedating effect I feel right now is probably from the Vicodin. I do not think the ami is going to work that quickly. And I only took 10 mg. Vicodin is a classic drowsy-maker, right? More likely that is the culprit right now.
So that kind of stinks. I absolutely could not take this and go to work. Too tired and dizzy--my balance is worse. Maybe I'll try cutting the pill in half next time. I am not sure it even helped with the pain. Well, I guess it helped. Just not a whole lot.
And Dr. Rick is still stumped on my vision problem. He told me to take 10 mg of prednisone today and tomorrow, then done. So I will end up skipping two days of 20 mg, which is what I would have taken today. Probably will not make much of a difference, but hopefully my eyes bounce back soon. It has not really bothered me, because I know where I am going here in town. But at one point today, I was looking for a building, and struggling with reading names and seeing numbers was frustrating. I think the only reason I am tolerating it well is because I assume that it will get better soon.
Well, on to my daily data:
Sensory:
-Pins and needles: 8, mixed with the freezing/burning pain
-Tingles: 0
-Dysesthetic pain: 9, only because I hesitate to put a 10 on anything. But wow, it was take-your-breath-away pain. And some in my bottom lip. You know, even my clothes make this pain worse.
-Paresthesias: 0, don't remember any, but I mostly remember feeling pain.
-Numbness: 2, same as yesterday. Tongue numbness is so nutty.
-Vision: 4, same as yesterday I think--a bit worse?
-Nerve pain: 6
-Hearing: 1
Motor:
-Walking: 2
-Sore muscles: 1
-Fine motor: 3
-Weak muscles: 3
-Spasticity: 3, and I did not do my stretches. Forgot.
Cognitive:
-Processing: 2
-Memory: 0
-Attention: 1
-Confusion: 2
General:
-Fatigue: 5 not counting right now--drugged right now
-Balance: 4 (but 6 right now on the Vicodin, lol)
-Sleep: 5, almost 7 hours but got up several times. Couldn't go back to sleep after my roommate's alarm woke me at 5:30.
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 6
-B: 6
-Tingles: 0
-Dysesthetic pain: 9, only because I hesitate to put a 10 on anything. But wow, it was take-your-breath-away pain. And some in my bottom lip. You know, even my clothes make this pain worse.
-Paresthesias: 0, don't remember any, but I mostly remember feeling pain.
-Numbness: 2, same as yesterday. Tongue numbness is so nutty.
-Vision: 4, same as yesterday I think--a bit worse?
-Nerve pain: 6
-Hearing: 1
Motor:
-Walking: 2
-Sore muscles: 1
-Fine motor: 3
-Weak muscles: 3
-Spasticity: 3, and I did not do my stretches. Forgot.
Cognitive:
-Processing: 2
-Memory: 0
-Attention: 1
-Confusion: 2
General:
-Fatigue: 5 not counting right now--drugged right now
-Balance: 4 (but 6 right now on the Vicodin, lol)
-Sleep: 5, almost 7 hours but got up several times. Couldn't go back to sleep after my roommate's alarm woke me at 5:30.
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 6
-B: 6
Emotions: Kind of stressed and upset about the pain, but not terrible. No tears. ;)
Monday, January 30, 2012
Blood Sugar Normal
Word of the day = pain.
And confusion. My doctors do not understand why my vision is blurry. My a1c (long-term blood sugar) test came back normal. Back to the drawing board. I emailed Dr. Rick, and he said to go straight to 10 mg of prednisone tomorrow and the next day, then done.
Sensory:
And confusion. My doctors do not understand why my vision is blurry. My a1c (long-term blood sugar) test came back normal. Back to the drawing board. I emailed Dr. Rick, and he said to go straight to 10 mg of prednisone tomorrow and the next day, then done.
Sensory:
-Pins and needles: 7, feet were awful, hard to tell this from the burning dysesthetic pain
-Tingles: 1
-Dysesthetic pain: 8, absolutely horrible in my left butt all the way down through my foot (following the sciatic nerve), and now the right, too. And some in my bottom lip. And on the side of my left hip. Luckily this did not last all day, because I would have been in tears. It came and went, so I did not get pushed past my breaking point. I have a pretty high threshold for pain, but this is bad stuff.
-Paresthesias: 2
-Numbness: 2, feet and that new strip on my forehead (sometimes), as well as down the center of my tongue--maybe a little right of center
-Vision: 4, maybe a little worse than yesterday
-Nerve pain: 6, some plain old nerve pain down my left leg
-Hearing: 1
Motor:
-Walking: 2, stiff but ok
-Sore muscles: 2
-Fine motor: 2
-Weak muscles: 4
-Spasticity: 5, PT gave me some stretches, including one for my poor shoulder
Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 0
General:
-Fatigue: 7
-Balance: 4
-Sleep: 5, got 6.5 hours, I think. I was up at 5:00 again.
-Bladder: 0
-Proprioception: 2
-Swallowing: 1
-A: 5
-B: 0
-Tingles: 1
-Dysesthetic pain: 8, absolutely horrible in my left butt all the way down through my foot (following the sciatic nerve), and now the right, too. And some in my bottom lip. And on the side of my left hip. Luckily this did not last all day, because I would have been in tears. It came and went, so I did not get pushed past my breaking point. I have a pretty high threshold for pain, but this is bad stuff.
-Paresthesias: 2
-Numbness: 2, feet and that new strip on my forehead (sometimes), as well as down the center of my tongue--maybe a little right of center
-Vision: 4, maybe a little worse than yesterday
-Nerve pain: 6, some plain old nerve pain down my left leg
-Hearing: 1
Motor:
-Walking: 2, stiff but ok
-Sore muscles: 2
-Fine motor: 2
-Weak muscles: 4
-Spasticity: 5, PT gave me some stretches, including one for my poor shoulder
Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 0
General:
-Fatigue: 7
-Balance: 4
-Sleep: 5, got 6.5 hours, I think. I was up at 5:00 again.
-Bladder: 0
-Proprioception: 2
-Swallowing: 1
-A: 5
-B: 0
Emotions: I was okay until after my two-hour (mostly waiting) PT appointment. I was over-tired and cried when I got home. Just exhausted. But I bounced back and had a good evening, despite the extreme pain.
Friday, January 13, 2012
Heard From Alyssa
I got a call from Alyssa, responding to my email from last night. In a nutshell, Dr. Rick wants to lay eyes on me, and he wants another neurologist to corroborate his findings (the study requires two neurologists check things out). He might order steroids. If I get worse before then, I should go to the ER and call Dr. Rick to see me there. Good thing I have his cell phone number. ;)
Thursday, January 12, 2012
Still Smiling
Another rough day. Slow start. Slow brain! My brain was slow all day, I had a lot of pain, my muscles were at the point of cramping many times, I was so tired. After I rested in the afternoon, I was able to help teach a class in the afternoon. Although I was in a lot of pain (dysesthetic pain in my left foot and leg), I had a good time. I like to do something to help distract me from the pain.
One new pain I had today was from my ear (maybe just anterior to it) to my eye and cheekbone. I looked it up: trigeminal neuralgia, aka "suicide pain." Mine is definitely not at suicide level, and I hope it does not get worse.
I emailed Alyssa this evening to let her know how I have been (crappy). I hope I do not need Solu-Medrol (steroids) again. I hated the side effects last time, and I had a rebound relapse afterward, which was when the dysesthetic pain began AND I got a UTI. I do take the cranberry pills now...
OH, and I tried to drink a lot of water today, because tomorrow is shot day. Hydration is part of the plan. :)
Sensory:
-Pins and needles: 6
-Tingles: 1
-Dysesthetic pain: 7
-Paresthesias: 3, some electric shocks
-Numbness: 5, things keep falling asleep, and my tongue numbness is really bugging me
-Vision: 2, no change
-Nerve pain: 4, leg and face
-Hearing: 0
Motor:
-Walking: 4, weaving, stiff, poor for distances like walking from my car to my front door
-Sore muscles: 4
-Fine motor: 3
-Weak muscles: 6
-Spasticity: 6
Cognitive:
-Processing: 3, sometimes I had sentence after sentence where my words were disfluent and often incorrect. Other times I was fine.
-Memory: 2
-Attention: 0
-Confusion: 3, still foggy. Morning was bad. I wandered around the kitchen picking things up and putting them down for at least 10 minutes. That was called packing a lunch.
General:
-Fatigue: 6
-Balance: 2
-Sleep: 4, I woke up HOT, because I was dumb enough to set the thermostat to 67 last night. Too hot for me to sleep. I know that, but my brain was fogged at that moment. And every time I woke up, one of my limbs or extremities was numb. That made it harder to fall back asleep.
-Bladder: 2
-Proprioception: 3
-Swallowing: 0
-A: 2
-B: 0
Emotions: OK, all things considered. I am probably a little sensitive. I was happy during the class. I was nervous while I was emailing Alyssa, but afterward, when I googled the nerve pain in my face and found that it was trigeminal neuralgia, I knew that I had done the right thing. That is definitely new, and it is definitely a problem. I felt more sure of myself and my symptoms. I do not want Solu-Medrol, but I also do not want to deal with all this pain and movement problems. And sleep problems because of these symptoms. So I am ok with the steroids if Dr. Rick feels I need them.
One new pain I had today was from my ear (maybe just anterior to it) to my eye and cheekbone. I looked it up: trigeminal neuralgia, aka "suicide pain." Mine is definitely not at suicide level, and I hope it does not get worse.
I emailed Alyssa this evening to let her know how I have been (crappy). I hope I do not need Solu-Medrol (steroids) again. I hated the side effects last time, and I had a rebound relapse afterward, which was when the dysesthetic pain began AND I got a UTI. I do take the cranberry pills now...
OH, and I tried to drink a lot of water today, because tomorrow is shot day. Hydration is part of the plan. :)
Sensory:
-Pins and needles: 6
-Tingles: 1
-Dysesthetic pain: 7
-Paresthesias: 3, some electric shocks
-Numbness: 5, things keep falling asleep, and my tongue numbness is really bugging me
-Vision: 2, no change
-Nerve pain: 4, leg and face
-Hearing: 0
Motor:
-Walking: 4, weaving, stiff, poor for distances like walking from my car to my front door
-Sore muscles: 4
-Fine motor: 3
-Weak muscles: 6
-Spasticity: 6
Cognitive:
-Processing: 3, sometimes I had sentence after sentence where my words were disfluent and often incorrect. Other times I was fine.
-Memory: 2
-Attention: 0
-Confusion: 3, still foggy. Morning was bad. I wandered around the kitchen picking things up and putting them down for at least 10 minutes. That was called packing a lunch.
General:
-Fatigue: 6
-Balance: 2
-Sleep: 4, I woke up HOT, because I was dumb enough to set the thermostat to 67 last night. Too hot for me to sleep. I know that, but my brain was fogged at that moment. And every time I woke up, one of my limbs or extremities was numb. That made it harder to fall back asleep.
-Bladder: 2
-Proprioception: 3
-Swallowing: 0
-A: 2
-B: 0
Emotions: OK, all things considered. I am probably a little sensitive. I was happy during the class. I was nervous while I was emailing Alyssa, but afterward, when I googled the nerve pain in my face and found that it was trigeminal neuralgia, I knew that I had done the right thing. That is definitely new, and it is definitely a problem. I felt more sure of myself and my symptoms. I do not want Solu-Medrol, but I also do not want to deal with all this pain and movement problems. And sleep problems because of these symptoms. So I am ok with the steroids if Dr. Rick feels I need them.
Saturday, January 7, 2012
I Gave Myself a Shot!
Yesterday I planned to write about my clinic visit, but I became too sick. Feeling better now.
Alyssa took so much blood from me yesterday! I believe it was 13 tubes. Things were going well until the last two. My vein was getting tapped out, and Alyssa had to move the needle around. Not enjoyable, but it was not terrible--I have had worse.
I had long series of tests, including one that I totally rocked (symbols representing number 1-9, you had to say what the symbols on the page represented using the key at the top--I memorized the key) and one that I totally bombed (a man saying numbers a couple of seconds apart--you had to add the last two numbers presented, like 1 4 (5) 6 (10) 1 (7) etc.). I also rocked the 25-foot walk, and I think I did a little worse than before on the peg test but probably still normal. I think I did fine on the vision test, but they did not tell me. A different research tech did these tests with me, and I like her a lot better than Michelle. Her name was Erica. She gave me a hug and said she would be praying for me.
I cried a little when Dr. Andy asked about cognition. He is so sweet and seems genuinely interested in how my symptoms impact me in the real world. He wanted to make sure that I am using what strategies I know, which I mostly am. He made me tear up again as he was leaving, when he said to hang in there, that he would be pulling for me and hoping I respond well to the medication.
I asked for a neuropsychological evaluation, which I will get. Apparently there is a neuropsych who was an SLP before going to medical school. Awesome! That is Dr. Holly. Hopefully I can see her, although there probably will be a wait.
And I asked for PT, which Dr. Rick did not seem inclined to write a prescription for. I am not sure I need one anyway. But I explained why I want PT, and he accepted that and wrote the script. Now I need to figure out whom to see. I emailed a PT I know who works with children; maybe she knows someone who works with adults.
Alyssa, the nurse, gave me the subcutaneous (under the skin, like diabetics) injection. Again, the subcu injection could be DAC HYP (daclizumab, the excellent-in-Phase 2-experiemental drug) or placebo. The intramuscular (IM) injection could be Avonex or placebo. I take both, but one is placebo and one is a real drug. I do not know which, and my clinic staff do not know which; the study is double blind. I am known by a number to the place controlling the study and sending out the meds/placebos.
So I go the subcu injection, which was fine until she pushed the medication in. It stung!! It stung for less than five minutes, but yowtch. Reminded me of when I have had the numbing medication injected into my face or neck to remove moles. This just lasted a little longer, since there was no nice numbness following it.
Then Alyssa taught me how to give myself the IM injection. The needle was long! I mean, not super long. It was 1.25 inches. It was not hard to understand how to give the injection: straight in, to the hilt. I practiced twice on a dummy skin thing. Wash hands, clean site with alcohol, open gauze, open needle package, pop the top off the syringe thing, screw the needle on, hold the skin taut (which Alyssa called taunt), push the needle in at a 90 degree angle, push the plunger down slowly, pull the needle straight out, put the gauze on, apply a band-aid.
Alyssa showed me a few ways to hold the syringe, and I chose what seemed like it would work for me. She showed me how to select a site. After practicing twice, I did not see what more I could gain from continued practice. I said I was ready for the real thing.
As I held the needle over my thigh, I began to move it downward, but something stopped me about three inches from my skin. Of course I stopped me. But it did not feel like I tried to stop. I had a little talk with myself. This is not going to get easier if I wait. Just do it. Go. Go. Go now. And then I did.
Just as Alyssa began to say that it was okay to take my time, I pushed the needle in. Quickly but not roughly. I wanted to stop or pull it back out, but thank goodness my intellect took over. That would have only made it worse. Even when I felt it go through different levels of resistance and I had a moment of panic wondering what I had hit, I kept pushing. Then it stopped itself. I pushed the plunger down slowly. I checked with Alyssa that I had injected it all and could remove the needle. I pulled it straight out. I quickly put the gauze pad over it. Then I cried.
Alyssa was exclaiming over my perfect technique and how she should have videotaped that, how she had never seen a patient give a perfect injection the first time. She stopped when she noticed me crying. She got me gauze to use as a tissue and rubbed my back, trying to get me to talk to her about it. I did talk a little.
I did not really know why I cried. But I told her that I am overwhelmed by having MS, that I am not finished grieving it, that I go through different stages. Lately I have been in more of a denial phase, saying that I do not want to have MS, that maybe it is a mistake, etc. She said that it is okay to feel whatever I feel, that I am doing the right thing by being involved in the study and taking my medications. She said there is no better place to be for MS care.
After my shot victory and minor breakdown, we went to another building for my MRI. That was the best MRI ever. I got to watch the cooking channel! Rachael Ray and Ina Garten--not my favorites, but beggars definitely cannot be choosers.
I was feeling kind of run down by the time I left, but all in all, it was a good day. I am grateful that I am in the study and that I live near a world-renowned MS center.
Alyssa took so much blood from me yesterday! I believe it was 13 tubes. Things were going well until the last two. My vein was getting tapped out, and Alyssa had to move the needle around. Not enjoyable, but it was not terrible--I have had worse.
I had long series of tests, including one that I totally rocked (symbols representing number 1-9, you had to say what the symbols on the page represented using the key at the top--I memorized the key) and one that I totally bombed (a man saying numbers a couple of seconds apart--you had to add the last two numbers presented, like 1 4 (5) 6 (10) 1 (7) etc.). I also rocked the 25-foot walk, and I think I did a little worse than before on the peg test but probably still normal. I think I did fine on the vision test, but they did not tell me. A different research tech did these tests with me, and I like her a lot better than Michelle. Her name was Erica. She gave me a hug and said she would be praying for me.
I cried a little when Dr. Andy asked about cognition. He is so sweet and seems genuinely interested in how my symptoms impact me in the real world. He wanted to make sure that I am using what strategies I know, which I mostly am. He made me tear up again as he was leaving, when he said to hang in there, that he would be pulling for me and hoping I respond well to the medication.
I asked for a neuropsychological evaluation, which I will get. Apparently there is a neuropsych who was an SLP before going to medical school. Awesome! That is Dr. Holly. Hopefully I can see her, although there probably will be a wait.
And I asked for PT, which Dr. Rick did not seem inclined to write a prescription for. I am not sure I need one anyway. But I explained why I want PT, and he accepted that and wrote the script. Now I need to figure out whom to see. I emailed a PT I know who works with children; maybe she knows someone who works with adults.
Alyssa, the nurse, gave me the subcutaneous (under the skin, like diabetics) injection. Again, the subcu injection could be DAC HYP (daclizumab, the excellent-in-Phase 2-experiemental drug) or placebo. The intramuscular (IM) injection could be Avonex or placebo. I take both, but one is placebo and one is a real drug. I do not know which, and my clinic staff do not know which; the study is double blind. I am known by a number to the place controlling the study and sending out the meds/placebos.
So I go the subcu injection, which was fine until she pushed the medication in. It stung!! It stung for less than five minutes, but yowtch. Reminded me of when I have had the numbing medication injected into my face or neck to remove moles. This just lasted a little longer, since there was no nice numbness following it.
Then Alyssa taught me how to give myself the IM injection. The needle was long! I mean, not super long. It was 1.25 inches. It was not hard to understand how to give the injection: straight in, to the hilt. I practiced twice on a dummy skin thing. Wash hands, clean site with alcohol, open gauze, open needle package, pop the top off the syringe thing, screw the needle on, hold the skin taut (which Alyssa called taunt), push the needle in at a 90 degree angle, push the plunger down slowly, pull the needle straight out, put the gauze on, apply a band-aid.
Alyssa showed me a few ways to hold the syringe, and I chose what seemed like it would work for me. She showed me how to select a site. After practicing twice, I did not see what more I could gain from continued practice. I said I was ready for the real thing.
As I held the needle over my thigh, I began to move it downward, but something stopped me about three inches from my skin. Of course I stopped me. But it did not feel like I tried to stop. I had a little talk with myself. This is not going to get easier if I wait. Just do it. Go. Go. Go now. And then I did.
Just as Alyssa began to say that it was okay to take my time, I pushed the needle in. Quickly but not roughly. I wanted to stop or pull it back out, but thank goodness my intellect took over. That would have only made it worse. Even when I felt it go through different levels of resistance and I had a moment of panic wondering what I had hit, I kept pushing. Then it stopped itself. I pushed the plunger down slowly. I checked with Alyssa that I had injected it all and could remove the needle. I pulled it straight out. I quickly put the gauze pad over it. Then I cried.
Alyssa was exclaiming over my perfect technique and how she should have videotaped that, how she had never seen a patient give a perfect injection the first time. She stopped when she noticed me crying. She got me gauze to use as a tissue and rubbed my back, trying to get me to talk to her about it. I did talk a little.
I did not really know why I cried. But I told her that I am overwhelmed by having MS, that I am not finished grieving it, that I go through different stages. Lately I have been in more of a denial phase, saying that I do not want to have MS, that maybe it is a mistake, etc. She said that it is okay to feel whatever I feel, that I am doing the right thing by being involved in the study and taking my medications. She said there is no better place to be for MS care.
After my shot victory and minor breakdown, we went to another building for my MRI. That was the best MRI ever. I got to watch the cooking channel! Rachael Ray and Ina Garten--not my favorites, but beggars definitely cannot be choosers.
I was feeling kind of run down by the time I left, but all in all, it was a good day. I am grateful that I am in the study and that I live near a world-renowned MS center.
Wednesday, December 14, 2011
Clinical Trial Screening Visit
The screening went great! And I was having a seriously fantastic day.
Alyssa, Dr. Rick's nurse, went over the consent form with me. We had a lot of time to chat, because Dr. Rick was running late. Dr. Rick came in and went over the consent form with me again. It was more of a consent packet than a consent form. How can a 25-page document be called a form? Anyway, then Dr. Rick did a neurological exam. The usual stuff.
He said they are very excited to have me in the study. I guess that means I qualified. Alyssa said that it is based on the exam and on my bloodwork--I cannot have hepatitis or HIV. Check and check.
Alyssa took my vitals, drew some blood, and did an EKG.
Michelle, a research assistant, did a "cognitive" exam. I would not really call it that. While it did have one cognitive measure, most of the tasks would not fall under that category. One was fine motor: pegs in holes then out again. How fast can I walk 25 feet (4 seconds!). And some vision tests. The only test I would call cognitive was a recording of a man saying numbers, and I had to add the last two numbers I heard. For example:
-Man: 1......... 8
-Me: 9
-Man: 4
-Me: 12
-Man: 2
-Me: 6
-Man: 7
-Me: Uhhh....
It went on for three minutes. I did fine. I had some slowdowns and forgot the numbers a few times, but I am sure I was well within normal limits.
Then another neurologist, Dr. Andy, came to do a neurological exam. Yes, another one. Two independent assessments are required for the study. Dr. Andy was so nice! Actually, Dr. Rick was, too. And Michelle commented, "He's so sweet." Staff always know what's up, right?
Dr. Andy was much more thorough than Dr. Rick. He just had me do more stuff. And he poked me with a pin. :( But not too hard. He checked sensation more than Dr. Rick did. He checked and rechecked (and re-rechecked) my left leg. And he had me walk laps in the hall with him. I was able to do five laps. The first one was pretty quick, but then I had to slow down. We talked while we walked, and he asked questions like What do you do if you get tired in a store? and Have you considered using a cane for stability? Gee, thanks--I get the hint. I told him that I did buy a cane, but I have not used it yet.
When I got back to the exam room, I was so worn out from walking that I started to cry a little. Sheer exhaustion. But I do not think Dr. Andy knew; he was filling out paperwork.
And that was it. Four hours altogether. I am really excited to get going with the medication, and I will pray that I am in the group that receives the experimental drug, daclizumab. This is the way the study works:
Alyssa is looking at getting me in on December 29 or 30 for the next appointment. That will be a long one. Everything we did today, plus a brain MRI and instruction on injecting myself. I will receive the first monthly injection that day, I will do the first weekly injection that day, as well.
Sensory:
Alyssa, Dr. Rick's nurse, went over the consent form with me. We had a lot of time to chat, because Dr. Rick was running late. Dr. Rick came in and went over the consent form with me again. It was more of a consent packet than a consent form. How can a 25-page document be called a form? Anyway, then Dr. Rick did a neurological exam. The usual stuff.
He said they are very excited to have me in the study. I guess that means I qualified. Alyssa said that it is based on the exam and on my bloodwork--I cannot have hepatitis or HIV. Check and check.
Alyssa took my vitals, drew some blood, and did an EKG.
Michelle, a research assistant, did a "cognitive" exam. I would not really call it that. While it did have one cognitive measure, most of the tasks would not fall under that category. One was fine motor: pegs in holes then out again. How fast can I walk 25 feet (4 seconds!). And some vision tests. The only test I would call cognitive was a recording of a man saying numbers, and I had to add the last two numbers I heard. For example:
-Man: 1......... 8
-Me: 9
-Man: 4
-Me: 12
-Man: 2
-Me: 6
-Man: 7
-Me: Uhhh....
It went on for three minutes. I did fine. I had some slowdowns and forgot the numbers a few times, but I am sure I was well within normal limits.
Then another neurologist, Dr. Andy, came to do a neurological exam. Yes, another one. Two independent assessments are required for the study. Dr. Andy was so nice! Actually, Dr. Rick was, too. And Michelle commented, "He's so sweet." Staff always know what's up, right?
Dr. Andy was much more thorough than Dr. Rick. He just had me do more stuff. And he poked me with a pin. :( But not too hard. He checked sensation more than Dr. Rick did. He checked and rechecked (and re-rechecked) my left leg. And he had me walk laps in the hall with him. I was able to do five laps. The first one was pretty quick, but then I had to slow down. We talked while we walked, and he asked questions like What do you do if you get tired in a store? and Have you considered using a cane for stability? Gee, thanks--I get the hint. I told him that I did buy a cane, but I have not used it yet.
When I got back to the exam room, I was so worn out from walking that I started to cry a little. Sheer exhaustion. But I do not think Dr. Andy knew; he was filling out paperwork.
And that was it. Four hours altogether. I am really excited to get going with the medication, and I will pray that I am in the group that receives the experimental drug, daclizumab. This is the way the study works:
-Group 1: Weekly Avonex injections done at home. These are given into a muscle (intramuscular). Monthly placebo injections done at the MS Center. These are given under the skin (subcutaneous).
-Group 2: Weekly placebo injections done at home, with packaging and materials that look like the Avonex stuff. Monthly daclizumab injections done at the MS Center. I want to be in this group!
The study is double blind, so I will not know which group I am in, and no one at the MS Center will know. I will be a number and initials to the people who know: researchers at the drug company, Biogen. Those researchers will not know my name nor meet me.
Alyssa is looking at getting me in on December 29 or 30 for the next appointment. That will be a long one. Everything we did today, plus a brain MRI and instruction on injecting myself. I will receive the first monthly injection that day, I will do the first weekly injection that day, as well.
Sensory:
-Pins and needles: 1
-Tingles: 0
-Dysesthetic pain: 3
-Paresthesias: 0
-Numbness: 2
-Vision: 3
-Nerve pain: 3
Motor:
-Walking: 1
-Sore muscles: 4, darn walking
-Fine motor: 2
-Weak muscles: 5
-Spasticity: 5, all that walking kicked it up?
Cognitive:
-Language processing: 1
-Memory: 1
-Attention: 1, caught myself zoning out on Dr. Rick a few times, oops
-Confusion: 0
General:
-Fatigue: 3, because Dr. Andy wore me out!
-Balance: 1
-Sleep: 3
-Bladder: 0
-Proprioception: 1
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