I saw the sleep specialist a few days ago. She is a PhD nurse practitioner working at a sleep clinic. I will call her Goola.
She is not sure why my sleep has become light and fragmented, but she would like me to try behavioral strategies for it. She said not to get in bed until I am so tired I cannot keep my eyes open. Maybe 2:00 am. I was surprised by that advice, to say the least. Usually you read that keeping a consistent bedtime is the best way to sleep well.
Goola said not to stay in bed awake more than 20 minutes. I protested that I am way too tired to get up. She said that I must train my brain that bed is for sleep. It does make sense, but she needs to keep in mind that MS involves significant fatigue. I may not be able to get out of bed when I am extremely fatigued. But I said that I would try.
I asked what to do if I wake up after I have slept (at 2:00 am or whenever I am too tired to keep my eyes open). She said that she is confident that I will remain asleep after I have fallen asleep.
Goola wants to check my thyroid and iron levels. Deficiencies in those can negatively affect sleep. Fasting blood draw... Boo.
Yesterday someone called me about scheduling a sleep study. Unfortunately I missed the call, because I was at work. The reason that was very unfortunately is because the sleep clinic works on a message-only phone system. You can never speak to a person! So I have to hope that they call back at a time I can answer the phone.
Last night I stayed up until 12:45 am, and I was so tired. But I did not fall asleep until 1:45! I slept 1:45-2:30, 5:30-6:30, and 6:45-7:45. So obviously Goola's prediction that I would stay asleep was incorrect. I will keep trying, though.
I emailed Dr. Rick and Alyssa to update them on that and on how I am doing with the trigeminal nerve pain that appeared on Monday. Honestly, I am doing a lot better the last two or three days. The Trileptal seems to be working! My face pain is a lot better. Before it was peaking at 10 and holding steady around 8. Now it is peaking at 8 and holding steady around 3-6.
The most amazing and confusing change is that my fatigue has been better the last few days. Well, yesterday I got enough sleep, because I took Ambien CR. But today I got less than three hours of sleep (not even three hours straight), and I am handling it so far. I am tired.
I have to admit that I have some issues today that I think are from lack of sleep. Tremor in my left hand, weakness in my legs, spasticity in my legs.
Alyssa called today to check on me, hear about the sleep appointment, and confirm which medications I am taking right now. It was nice to talk to her. She said I sound better than when she saw me a week ago. We also discussed the sleep study plan: visits every four weeks for the next few months, with quarterly visits after that. I still need to do the cognitive testing, and I guess the MRIs. I wonder if Dr. Rick will have access to the MRIs. He normally would not.
Oh my, I am getting really tired now. How on earth can I survive until 1:00 am to go to bed? I hope I can sleep tonight.
As I was getting ready to post this, I got a call from the sleep center. I have an appointment for tomorrow at 9:00 pm!
Showing posts with label labs. Show all posts
Showing posts with label labs. Show all posts
Friday, November 16, 2012
Friday, February 3, 2012
Shots and Pain
Today I had my monthly visit at the MS Center. This was a short visit, just an hour with Alyssa--vitals, shot, bloodwork, medication update, vitals, making copies of my log book. I keep a log of the shots I do at home, with pain levels before and after the shot. It is not a big deal.
My blood pressure was 133/80 and pulse 80, but I was chatting with Alyssa at the time. Then it was 120/62 and pulse 75. That is still higher than normal for me, but that is what it has been the last two months whenever I go to the doctor. I hope it is not really increasing, that I am just nervous to be there.
My vein ran dry after about five tubes of blood, and I still had six or seven more. Then she had trouble getting another vein. Ugh. The needle sticks did not hurt very much, though. I asked Alyssa to print my labs from the fall, which she was kind enough to do. That had my Vitamin D, calcium, etc.
The subcutaneous shot with the daclizumab/placebo STUNG again. Yeowch. I would take the bloodwork over that shot any day.
I did my own shot at home, and it went fine. I remembered to pull the skin taut. It hurt a little, and then it spurted some blood when I took the needle out. That surprised me. I must have nicked a little blood vessel. I put pressure on it, and it was fine.
My mouth had been so dry today. All of my mucous membranes, really, but my mouth was the one that bothered me. I suspect the amitriptyline.
I had a great morning, and an alright afternoon, but the evening has been pretty bad. Severe pain in my butt, legs, and feet. Oh my goodness. So bad. And in my tongue! The pain in my lower body has often been more like electricity than freezing/burning. It is bad either way. Oh, and the pins and needles get in there. The three sensations morph and blend with each other.
One thing that is worrying me a bit is that I seem to have lost the ability to feel full. I eat and eat, and I stop when I realize that I have eaten way more than I typically would. I wonder why I do not feel full. It gets to where my stomach feels huge and I even (grossness warning) reflux up some food, yet I do not feel full! I do not like this at all. I think it has been going on for several days now... maybe since Monday. I seem to recall eating a lot for lunch that day. I really hope this is related to the steroids, not MS. I want it to go away. I also do not think I am as good at tasting things and detecting temperature with my tongue--I am sure that is because of the numbness and pain.
So far my side effects are ok from the shots. I guess. I feel hot, but my temperature is normal. I was very achy for a while, but it got better. That was 30-60 minutes after my IM shot, so probably too early for that to be the reason. I guess I am still achy, now that I am attending to it. And I started feeling really sick around 5:00. That was before I did my IM shot.
Sensory:
My blood pressure was 133/80 and pulse 80, but I was chatting with Alyssa at the time. Then it was 120/62 and pulse 75. That is still higher than normal for me, but that is what it has been the last two months whenever I go to the doctor. I hope it is not really increasing, that I am just nervous to be there.
My vein ran dry after about five tubes of blood, and I still had six or seven more. Then she had trouble getting another vein. Ugh. The needle sticks did not hurt very much, though. I asked Alyssa to print my labs from the fall, which she was kind enough to do. That had my Vitamin D, calcium, etc.
The subcutaneous shot with the daclizumab/placebo STUNG again. Yeowch. I would take the bloodwork over that shot any day.
I did my own shot at home, and it went fine. I remembered to pull the skin taut. It hurt a little, and then it spurted some blood when I took the needle out. That surprised me. I must have nicked a little blood vessel. I put pressure on it, and it was fine.
My mouth had been so dry today. All of my mucous membranes, really, but my mouth was the one that bothered me. I suspect the amitriptyline.
I had a great morning, and an alright afternoon, but the evening has been pretty bad. Severe pain in my butt, legs, and feet. Oh my goodness. So bad. And in my tongue! The pain in my lower body has often been more like electricity than freezing/burning. It is bad either way. Oh, and the pins and needles get in there. The three sensations morph and blend with each other.
One thing that is worrying me a bit is that I seem to have lost the ability to feel full. I eat and eat, and I stop when I realize that I have eaten way more than I typically would. I wonder why I do not feel full. It gets to where my stomach feels huge and I even (grossness warning) reflux up some food, yet I do not feel full! I do not like this at all. I think it has been going on for several days now... maybe since Monday. I seem to recall eating a lot for lunch that day. I really hope this is related to the steroids, not MS. I want it to go away. I also do not think I am as good at tasting things and detecting temperature with my tongue--I am sure that is because of the numbness and pain.
So far my side effects are ok from the shots. I guess. I feel hot, but my temperature is normal. I was very achy for a while, but it got better. That was 30-60 minutes after my IM shot, so probably too early for that to be the reason. I guess I am still achy, now that I am attending to it. And I started feeling really sick around 5:00. That was before I did my IM shot.
Sensory:
-Pins and needles: 8
-Tingles: 1
-Dysesthetic pain: 9
-Paresthesias: 9, the electricity
-Tingles: 1
-Dysesthetic pain: 9
-Paresthesias: 9, the electricity
-Numbness: 3
-Vision: 4, it was a lot better this morning, got worse again in the late afternoon. I am very hopeful for tomorrow.
-Nerve pain: 7
-Hearing: 1
Motor:
-Walking: 1
-Sore muscles: 7, my upper arm really hurts where I had my subcu shot. And my legs, with the spasticity. But I had little pain this morning.
-Fine motor: 2
-Weak muscles: 5
-Spasticity: 6
Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 2
General:
-Fatigue: 6, but I would probably say 3/4 until early afternoon. Later in the afternoon and all evening it has been more like 7/8.
-Balance: 2
-Sleep: 0
-Bladder: 1
-Proprioception: 1
-Swallowing: 0
-A: 2
-B: 0
-Vision: 4, it was a lot better this morning, got worse again in the late afternoon. I am very hopeful for tomorrow.
-Nerve pain: 7
-Hearing: 1
Motor:
-Walking: 1
-Sore muscles: 7, my upper arm really hurts where I had my subcu shot. And my legs, with the spasticity. But I had little pain this morning.
-Fine motor: 2
-Weak muscles: 5
-Spasticity: 6
Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 2
General:
-Fatigue: 6, but I would probably say 3/4 until early afternoon. Later in the afternoon and all evening it has been more like 7/8.
-Balance: 2
-Sleep: 0
-Bladder: 1
-Proprioception: 1
-Swallowing: 0
-A: 2
-B: 0
Emotions: Nothing to talk about. Maybe a little irritable.
Tuesday, December 6, 2011
Officially Diagnosed...
...Again.
I spoke with Dr. Harry today. He supported the MS diagnosis given to me (twice, lol) by Dr. Idiot Gabby.
My spine MRI was clear--no visible lesions. My Vitamin D level was 50, which is right in the middle of where it should be. My calcium level was fine; no increased risk for kidney stones for now (whew). I tested positive for the JC virus, which means that I am at increased risk for a fatal brain infection if I choose to use a medication called Tysabri.
The tests for copper deficiency, Sjogren's syndrome, neuromyelitis optica, and lupus were all negative. What a relief. Gee, it is only MS.
So I can keep my screening appointment with Dr. Rick next week. If I do not qualify for the study, I can speak with Dr. Harry about getting on a disease-modifying drug.
But that means I will really be injecting myself. This is suddenly more real. I have mixed feelings--let's save that for the emotions section, hm?
Meanwhile, I feel like I might be coming down with something. Hopefully it is not the explosive diarrhea one of my students had yesterday!
Sensory:
I spoke with Dr. Harry today. He supported the MS diagnosis given to me (twice, lol) by Dr. Idiot Gabby.
My spine MRI was clear--no visible lesions. My Vitamin D level was 50, which is right in the middle of where it should be. My calcium level was fine; no increased risk for kidney stones for now (whew). I tested positive for the JC virus, which means that I am at increased risk for a fatal brain infection if I choose to use a medication called Tysabri.
The tests for copper deficiency, Sjogren's syndrome, neuromyelitis optica, and lupus were all negative. What a relief. Gee, it is only MS.
So I can keep my screening appointment with Dr. Rick next week. If I do not qualify for the study, I can speak with Dr. Harry about getting on a disease-modifying drug.
But that means I will really be injecting myself. This is suddenly more real. I have mixed feelings--let's save that for the emotions section, hm?
Meanwhile, I feel like I might be coming down with something. Hopefully it is not the explosive diarrhea one of my students had yesterday!
Sensory:
-Pins and needles: 4? This, dysesthesia, and numbness all blur together. It is hard to separate them.
-Tingles: 0? The pain blurs other feelings.
-Dysesthetic pain: 8. Seriously. I should have known when it was already a 4 when I woke up that today would be a doozy. It was up and down, but this evening has been absolutely out of control.
-Paresthesias: 1, foot buzzing, which has happened a few times each day lately
-Numbness: 5, partially numb legs and feet, plus tongue issues. This evening, I have been lying on my stomach, trying to give my sciatic nerves a break. Well, my arms keep getting numb, since I am bearing weight on them. Out of the frying pan and into the fire.
-Vision: 2, still on the blurry side, plus I am very light sensitive.
-Nerve pain: 7
-Hearing: 0
Motor:
-Walking: 1
-Sore muscles: 3
-Fine motor: 3
-Weak muscles: 4
-Spasticity: 4, the regular tightness and some muscle twitches in my right glute
Cognitive:
-Language processing: 2, mostly having problems with written language
-Memory: 1
-Attention: 2
-Confusion: 0
General:
-Fatigue: 5
-Balance: 2
-Sleep: 4, had trouble sleeping again--bad dreams, waking up scared
-Bladder: 2, which is so discouraging
-Proprioception: 1
Emotions: I am relieved that I will get treatment. I am relieved that I am being believed. I am apprehensive about giving myself injections. Forever. The rest of my life! That is overwhelming. I am sad that I have MS. I do not think it has fully hit me. Maybe people are right that it takes a year to process and accept the diagnosis.
This cannot be my reality.
This cannot be my reality.
Friday, November 18, 2011
Screening Pushed Back
I finally got my MRI script in the mail, and I immediately called to make an appointment. Because my scans will take two hours, the soonest they could get me in was November 28. I was not happy and really tried to get in sooner, but the scheduler was having none of it.
Then I called Dr. Rick to tell him that I do not know if I will be able to keep the screening appointment on November 30 due to the MRI appointment being to close to it. Dr. Harry will need to receive my MRI disc, review it, and make his decision on whether he agrees with the MS diagnosis or not. I guess. I still think it is bull that he is requiring the spine MRI. The diagnosis can be clinical. If he continues to give me crap, I want to switch to another neurologist there. Like Dr. Rick!
When I talked to him, he explained that the NMO test will take two weeks, so I would not be ready for the screening by November 30 anyway.
Too bad Dr. Harry dragged his feet for two weeks, hm?
Dr. Rick's secretary (nurse?) will call me to reschedule.
I also saw Dr. Rob today, because I have a hard bump behind my right ear. He said it is not a lymph node, because it is too high up. It might be an infected mastoid. But it does not hurt. It might be a cyst... but it is a little hard for that. He is going to look at my MRI from September. If it is there, we will ignore it. If it is not there, I will go for a CT scan. Sounds like a good plan to me.
Dr. Rob asked about my appointments at the MS Center. He is glad I am being seen there. It is the right place for me, given how aggressive my disease is. Oh, boy. I hate it when he says that. My disease is aggressive?
I told him about the clinical study. Now, this was before the screening visit got put off. Anyway, he asked about the drug, and I told him the name. He asked if it was a such and such... uh... I have no idea what he said. I said, "It's a monoclonal antibody." Haha, like I know what that means!
I cannot wait to get on treatment. At the same time, I am terrified to get on treatment. It will make my MS more real.
Then I called Dr. Rick to tell him that I do not know if I will be able to keep the screening appointment on November 30 due to the MRI appointment being to close to it. Dr. Harry will need to receive my MRI disc, review it, and make his decision on whether he agrees with the MS diagnosis or not. I guess. I still think it is bull that he is requiring the spine MRI. The diagnosis can be clinical. If he continues to give me crap, I want to switch to another neurologist there. Like Dr. Rick!
When I talked to him, he explained that the NMO test will take two weeks, so I would not be ready for the screening by November 30 anyway.
Too bad Dr. Harry dragged his feet for two weeks, hm?
Dr. Rick's secretary (nurse?) will call me to reschedule.
I also saw Dr. Rob today, because I have a hard bump behind my right ear. He said it is not a lymph node, because it is too high up. It might be an infected mastoid. But it does not hurt. It might be a cyst... but it is a little hard for that. He is going to look at my MRI from September. If it is there, we will ignore it. If it is not there, I will go for a CT scan. Sounds like a good plan to me.
Dr. Rob asked about my appointments at the MS Center. He is glad I am being seen there. It is the right place for me, given how aggressive my disease is. Oh, boy. I hate it when he says that. My disease is aggressive?
I told him about the clinical study. Now, this was before the screening visit got put off. Anyway, he asked about the drug, and I told him the name. He asked if it was a such and such... uh... I have no idea what he said. I said, "It's a monoclonal antibody." Haha, like I know what that means!
I cannot wait to get on treatment. At the same time, I am terrified to get on treatment. It will make my MS more real.
Wednesday, November 16, 2011
Did Labs and Had a Good Day
Lost about eight tubes of blood today... but it was for a good cause. It did not even hurt! I barely felt the needle go in, and just a tiny twinge when she had to move it around a little. So I tested the skin on my arm.
Oh, it's kind of numb. Well, that explains it.
Sensory:
Oh, it's kind of numb. Well, that explains it.
Sensory:
-Pins and needles: 1
-Tingles: 0
-Paresthesias (burning): 1
-Paresthesias (other): 1
-Numbness: 2
-Vision: 2
-Nerve pain: 1
Motor:
-Gait: 3
-Sore muscles: 2
-Fine motor: 2
-Weak muscles: 5--definitely my biggest problem today
-Spasticity: 1
Cognitive:
-Language processing: 2
-Memory: 3, frustrating! I keep forgetting what I was about to do or say.
-Attention: 1
-Confusion: 1
General:
-Fatigue: 2
-Balance: 1
-Sleep: 2
-Bladder: 1
Great day, as you can see.
Tuesday, November 15, 2011
Lab Order Arrived
Got my lab order!
NMO IgG, Copper level, Anti-Ro, Anti-La, Anticardiolipin antibody, ANA w/ reflex, Beta-2-glycoprotein, Lupus anticoagulant assay w/ reflex
So he is checking NMO and copper as he said, as well as Sjogren's and Lupus. Well, I would be surprised if I have Sjogren's, as I do not have the classic symptoms of dry mucous membranes. And I would be surprised if I have Lupus as I have no skin symptoms and my symptom profile is quite neurological. It would be an atypical presentation, but I suppose it is possible.
However, the ICD9 code he put on the order was 340, which I looked up... Multiple Sclerosis.
So I will get my blood drawn tomorrow and hopefully get back all negative results. While I do not want to have MS (I was thinking about starting the clinical trial and almost cried), I am pretty sure I want these other disorders even less.
I never did hear back about my Vitamin D levels, blood calcium, and urine calcium. I am going to call and bug them tomorrow. I am also going to bug them AGAIN about the as-yet-unreceived MRI order.
OH, I think I forgot to mention that I spoke with Dr. Rick's secretary yesterday, and she is working on scheduling a screening visit for me on November 30 for the daclizumab study. Unless something happens with the bloodwork and it turns out I do not have MS after all.
Sensory:
NMO IgG, Copper level, Anti-Ro, Anti-La, Anticardiolipin antibody, ANA w/ reflex, Beta-2-glycoprotein, Lupus anticoagulant assay w/ reflex
So he is checking NMO and copper as he said, as well as Sjogren's and Lupus. Well, I would be surprised if I have Sjogren's, as I do not have the classic symptoms of dry mucous membranes. And I would be surprised if I have Lupus as I have no skin symptoms and my symptom profile is quite neurological. It would be an atypical presentation, but I suppose it is possible.
However, the ICD9 code he put on the order was 340, which I looked up... Multiple Sclerosis.
So I will get my blood drawn tomorrow and hopefully get back all negative results. While I do not want to have MS (I was thinking about starting the clinical trial and almost cried), I am pretty sure I want these other disorders even less.
I never did hear back about my Vitamin D levels, blood calcium, and urine calcium. I am going to call and bug them tomorrow. I am also going to bug them AGAIN about the as-yet-unreceived MRI order.
OH, I think I forgot to mention that I spoke with Dr. Rick's secretary yesterday, and she is working on scheduling a screening visit for me on November 30 for the daclizumab study. Unless something happens with the bloodwork and it turns out I do not have MS after all.
Sensory:
-Pins and needles: 2
-Tingles: 0
-Paresthesias (burning): 1
-Paresthesias (other): 0
-Numbness: 4, no change in the permanently numb areas, still losing feeling when I sit. Most of the time. I should pay attention to times I sit and do not lose feeling--maybe chair height? Softness? Angle?
-Vision: 2.. getting better?
-Nerve pain: 3
Motor:
-Gait: 2
-Sore muscles: 4, and even worse this morning. I am stiff and sore most mornings, then it gets better as I move around, and then it gets worse in the late evening again.
-Fine motor: 2, I am typing much better today!
-Weak muscles: 5, I do not feel safe going down stairs lately. And I sometimes feel like my legs might buckle when I am standing. Standing is harder than walking for some reason. Maybe it is in my head?
-Spasticity: 3
Cognitive:
-Language processing: 2
-Memory: 2
-Attention: 0
-Confusion: 2
General:
-Fatigue: 4
-Balance: 1
-Sleep: 3, close to eight hours but broken up a little
-Bladder: 1
Subscribe to:
Posts (Atom)