Negatives Outweighing Positives

Let's start with a positive: Physical therapy is going well. Today I saw Kate, and after I wore myself out with exercises (honestly not many; I am easily worn out), she worked on my upper back and shoulder. It hurt!! I can take a lot of pain, though. It was not as bad as my MS pain. Or surgery without anesthesia. ;) After working on my rhomboids, levator, and teres for a while, she had my sit up. She asked if I still had pain, and I said yes. The amazing part... She did something about it! My previous PT experience was different. But Kate continued to work on my rhomboids and made the pain nearly go away.

Boo: I have had a migraine for five hours.

Yay: I am recovering from the steroids. Do not get me wrong; I feel awful. On a scale of 0 (great) to 10 (awful), today was a 9, down from 10s last week. But I did not feel an awfulness of 9 when I woke up, so that is an improvement.

Boo: My nerve pain is bad today. I think it is the weather. I have noticed that it tends to be worse when a storm is coming. I am like an old farmer: "My knee says it will rain!"

Yay: My butt incision is finally healing. I know: it has been six weeks! It keeps tearing and gaping. My friend put butterflies on it a few days ago, so it cannot open back up. Hopefully it is not growing MRSA inside of it. I cannot really keep it clean without getting the butterflies wet. I do not want to take them off, because I want to give the tissue a chance to knit together and STAY.

Boo: I am depressed. I am just sick of being sick. Cliched but true. I am becoming reconciled to the idea that I will not be healed. It does not matter how much faith I have.

On Friday, I met with my shrink, Ruth, and I had one big question I wanted answered: How do I not have a stress response when I am too sick to do basic life tasks? I realized that I am becoming stressed and anxious when I am sick in the morning or when I go to bed without having recovered from the day. I am learning how my MS operates and improving at predicting how things will go. For example, if my fatigue is at a 9 at 10:00 am, I am going to be incoherent by noon if I continue to do taxing things like, oh, sitting up.

So I talked with Ruth about that, and she did not have answers. She said to hold onto hope, and I said that I do not have any. I also said that I did not think that my thoughts were distorted; I thought my predictions were reasonable based on experience. And she agreed. She agreed that there is no reason for me to hold onto hope, but that somehow I should anyway. I should find a way. And that she was holding onto hope for me. Then she offered to have her husband give me a blessing.

As he began the blessing, I was thinking of a word, a half question that I could not really formulate into a complete thought due to my fatigue. Right after I thought the word, he said it.

This was not a blessing of healing, but it was a blessing of knowledge. I knew that I will not be healed, and that knowledge was a little bit comforting, because at least I can know what to expect. It is kind of like when a child acts out repeatedly and then the parent begins to discipline the child. Every time he hits, he sits in time out. And somehow the child feels less anxious. I am not saying that I am being punished. I am saying that boundaries and set expectations are comforting, in a way.

But I am still not happy to be sick! When I am this sick, I want so badly to die. I just want it all to be over. I find joy in small things, I love my kids, I have fun sometimes, blah blah blah, but my body is being tortured from the inside out. And it is getting worse, not better. So many times these past two weeks I have thought of my bottle of Percocet. I like having it around, just in case. Of course, I have so many meds--I could easily concoct a home remedy if I wanted. The only thing that keeps me from doing that is my best friend, who would never get over it. So I am living for her.

Miserable

The steroids are hitting me pretty hard. I feel just awful, like I am not really living but waiting to die.

Today the joint pains kicked in, along with a headache. My trigeminal neuralgia became worse yesterday--my upper left row of teeth have hurt so badly that I can hardly eat. Today I took Percocet for it, which helped. The nerve pain in my left is worse. It is a weird pain, hard to describe. Bad. But at least the Hug is gone, and I took the last dose of steroids today. Now I just have to heal from the medication.

PT is going okay. Kate and Dave are nice. It hurts when they work on my upper back, but I suppose it is helping. I hate doing the exercises. It is hard to stand even briefly, and I have to stand up for four of the exercises. Boo. I do not mind the heat therapy, though. I close my eyes and trip out with my vertigo. It is not so scary now that I am used to it.

I am stir crazy but too tired to do anything. This morning I went to the grocery store to get breakfast, and I could not walk when I got home. I would like to read, but my brain is too tired.

I cannot remember when I last blogged, but I had anxiety from the steroids for a while. I had gotten the Klonopin for that. Well, either that was too much Klonopin or it just did not agree with me, because it brought me down too much. Crying off and on. Dark. But that could have been the steroids directly. Or just feeling to awful. It did not seem completely proportional to how I felt physically, but it is hard to remember now. It was yesterday and the day before. Today I am having trouble keeping a thought in my head for more than a second, so yesterday might as well have been a million years ago.

Oh, get this... Steroid insomnia, right? The last few nights, I have taken 3 mg Lunesta and 0.5 mg Klonopin around 10:15, fall asleep around 11:00, wake up at 3:30, take 12.5 mg Ambien CR, back to sleep by 4:00, and wake up again at 6:00, 7:00, 7:20, 7:30... I would take another Lunesta at 3:30, if I had enough. I have extra Ambien CR, because I had just refilled the prescription when Dr. Rob switched me to Lunesta. I think I need more sleep, but I do not see how I can get it. I do have a few Sonata left from a previous steroid run. I only get about two hours of sleep from it on a good day, but it does help me fall asleep quickly, with that freaky "down the rabbit hole" feeling that I used to hate but now welcome, because it at least means sleep. (How is that for a run-on sentence?)

I hate MS.

It's Official--Yes, Again

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.

Need. Sleep.

Today I felt the most sick I have felt in a while, probably since the last time I was on steroids. Well, the last time I had a full course of steroids--the one day in July does not really count.

Last night I slept an hour, woke up, another hours, etc. All night long! But on the positive side, I fell asleep in less than an hour, and I went back to sleep within 20 minutes each time. Part of the problem was that I was hot--still trying to figure out the temperature setting that will work now that I am downstairs. But part of it was just me, sleeping shallowly. At least I am out of the "take two hours to fall asleep, sleep two hours, and feel totally awake the rest of the night" habit. Hopefully things are moving in the right direction, as my nurse likes to say. But I am still exhausted, feel SICK, and want to cry. Maybe I should, because it often helps. Crying and eating sometimes help.

I do not sleep when I am on steroids, so maybe that is why I feel similarly to those times.

My morning was terrible, the afternoon was more bearable, but then I have gotten worse again since getting home from work. Thank goodness I had rides today. This morning I absolutely would have stayed home if I had not had a ride. But I enjoy going to work, absolutely adore my students, so I want to be there.

I have not heard anything from the sleep clinic! I will email Alyssa to see if Dr. Rick has filled out the referral paperwork. Or if he has even received it.

I guess I had better take Ambien again tonight. I can go without it tomorrow night. Ugh, except that tomorrow is my shot day, and I want to sleep through the side effects. There is never a good time to miss sleep!

Medication Reaction?

I guess I will give an update on my health.

I had to stop the steroids after one dose of 100 mg. A few hours after taking the drug, I was half asleep and suddenly jolted awake by my heart pounding. It was like nothing I have experienced.

My heart was pounding so hard that I seriously wondered if I might die. My head was spinning--vertigo, even though it was dark. I immediately suspected a medication reaction or interaction. I felt like everything was far away. And everything seemed big and small at the same time. Swollen. I do not know.

Then I remembered reading in a psychology book about panic attacks, that people think they are having a heart attack or will die. I remembered the advice to breathe through it. Just keep breathing. Wait for it to pass, because it will not continue forever.

And it did stop after a few minutes. But it happened again, three times in half an hour. Then I fell asleep. More like passed out: I had taken sleeping medicine.

I emailed my neurologist, describing the incident and saying that I thought I had had a panic attack. His response surprised me. He thought it was a medication reaction, because people do not have panic attacks when they are relaxed and almost asleep. He told me not to take the steroids for now. If I were to take them again, make sure it is in the morning.

Umm... I did not want steroids. But after I had resolved to take them, I wanted them. I expected to take the course and be done. I was disappointed stopping, because I was really hoping they would help. I considered taking them anyway. I still thought it might have just been panic attacks. But I was afraid that my doctor was right, and I might have a worse reaction and need medical attention; then my neurologist would not be able to trust me. We need to be able to trust each other.

I wonder if I got a bit better on Thursday and Friday because of the steroids? I took them Tuesday night. I do not know. MS is so unpredictable.

What I do know is that I have been sick for over a month, and I want to get better.

Back On the (Weak) Juice

Today my neurologist put me on steroids again. (Head in hands...)

I am nervous, although I am not sure exactly what I am worried about. The main problems I have had from steroids were not sleeping (three hours and awake for the rest of the night) and joint pain. And blurry vision, but it was still functional. Joint pain was when I was on IVsolu-medrol, not prednisone, and this time I am taking prednisone.

This time I am on a much lower dose, though: 100 mg for three days then a five-day taper.

In addition to the prednisone, my neurologist prescribed a different sleeping medicine, Sonata. I am not sure it will be a good fit for me, because I read online that it only works for four hours. That is how long I got from Ambien, which works at least seven hours for most people. I will give it a few days. It looked to me like extended-release Ambien might be a better fit for me. I will ask about it if Sonata does not work.

Wow, I am feeling really anxious. I guess I am still not comfortable with steroids. I feel really sick while I am on them. However, they have helped my symptoms in the past, and I am struggling so much with my MS right now. I am in so much pain. It is worth a try.

I am worried that my sleep problems will get worse, but I am reminding myself that I worked through it in the past. I think I called out sick from work once or twice the last time I was on steroids. I was dizzy, not safe to drive, and absolutely miserable... but I survived, and then I felt better than before taking the steroids.

MS is not enjoyable.

Bad, Bad Doctor

I saw another ophthalmologist today for my follow-up to January's five-hour ordeal. Today was only a 2.5 hour ordeal, because I did not need to have my eyes dilated or retinal photography. And I did not have a neuro-ophthalmology consult like last time.

I did not even see the technician today until more than an hour after my appointment time. When I commented on that, she got the doctor (a resident), who said that she knew I had been waiting, but other people had been waiting, too. She continued in her most condescending tone, "I could not exactly skip them to see you. That wouldn't be right." Yes, that is exactly what I thought, so thank goodness you helped me to see reason.

Delightful introduction to that doctor, wasn't it? Things did not get better from there.

She asked how many more times I am planning to have steroids. I was dumbfounded, slowly realizing that she was an idiot. Later I realized that she just did not know anything about MS. I responded to her that it would depend how many more relapses I have.

She said there are other medications for relapses, not just steroids. I said that there is Acthar but that it just causes your body to make its own steroids, so it might have the same effect. She said there are other meds. I asked what they are, truly wondering, as I would love to control relapses another way. She snapped that she is not a neurologist and does not know.

She asked me point blank if I really have MS. I mentioned the agreement of four neurologists... three at Johns Hopkins. Yes, you idiot, I have MS.

She suggested that although I am not a diabetic, my vision problem might have been from blood sugar. For the second time, I brought up my normal a1c test.

She suggested that my MS meds were causing my eyes to be dry, which makes them more sensitive. How sensitivity relates to a specific kind of blurriness where letters seem to overlap each other, always horizontally (such as nn looking like m), and where sometimes I see double but only with thin, vertical objects, I do not know. Anyway, sensitivity makes things blurry, according to this resident. I said, "Steroids can make your eyes dry?" She said sure. And the other MS meds I am on can. I said that I did not know that. Truth! Avonex or daclizumab can make your eyes dry? It was later that I realized she was full of it. She said that other meds could make my eyes dry, as well, and I was on other meds. I asked if they would do that for a few weeks and then get better. She said it is possible. Huh. And only while I am on steroids? I am sure she would have said that was possible, too.

While she was typing her notes, I thought of something the technician had said and began, "If my pupils are larger than normal, might that be--" and she cut in to say curtly, "They're fine."

She said she would put me down for a follow-up in three months. I asked what would be gained by that. It was a serious question; I do not feel the need to miss a day of work just to be insulted and have my time wasted again. I gained nothing today except some baseline data. And that is fine with me. But I do not need baseline data twice. Of course she became snippy at my question and nastily said, "Fine, come back or not, it's up to you."

As I was leaving, she (again with a perfected-through-practice saccharine tone) commented, with her back to me, "I'm glad you are all better." I said that I just wish I knew what the problem was. She said, "Don't we all."

So inappropriate.

Oh my gosh, I just realized... She said that she read my chart. That would include the neuropsychologist's opinion that I am totally fine. I would bet this idiot eye doctor thought I was a hypochondriac.

Good thing I did not tell her that they still get blurrier when I am tired or hot. I am sure it would only have reinforced her idiotic case.

On the bright side, I have had a low-pain day so far. Hopefully the evening goes as well.

Sensory:

-Pins and needles: 0
-Tingles: 1, left hand
-Dysesthetic pain: 1
-Paresthesias: 1

-Numbness: 2
-Vision: 0-1
-Nerve pain: 2
-Hearing: 0? I do not remember having a problem today.

Motor:
-Walking: 2
-Sore muscles: 1

-Spasticity: 1
-Weak muscles: 3

-Endurance: 4

-Fine motor: 1

Cognitive:
-Processing: 1
-Memory: 1
-Attention: 0
-Confusion: 0

General:
-Fatigue: 4
-Balance: 1

-Vertigo: 0

-Sleep: 4, 7 hours

-Bladder: 1
-Proprioception: 1
-Swallowing: 1
-A: 2
-B: 0

Emotions: Fine until that eye doctor visit! Then I was frustrated, hurt, and angry. Mostly frustrated and hurt. Kind of confused, too.

Steroid Wrap-Up

I began the steroids on a Wednesday night, which will be Day 1, and I took them with dinner each night afterward, as directed: 500 mg days 1-5, 60 mg days 6-7, 50 mg days 8-9, etc. The taper is down 10 mg every two days.

On my second day at 30 mg, my neurologist told me to go straight to 10 mg the next day. This was due to my blurred vision.

Pros:
-Painful paresthesias in right leg greatly decreased
-Pain and numbness in face/tongue gone
-Decreased spasticity in both legs, especially right (although on day 8 it increased again)
-Walking better? (we'll see when the steroids stop affecting my joints)
-More energy after the steroid fatigue wears off and I am able to sleep again? I do have times where my energy level is okay, which I did not have during the week before I began steroids. Day 10 was much better. Sick afternoon of day 11, but that may have been from Avonex. Better days after 12

Cons:

-Swollen, painful joints began day 4, worse days 5-6, better but continuing through day 11, minimal days 12-15

-Blurred vision began day 3, worsened day 4, worst days 5-15

-Vertigo increased (had some, became worse) days 3-7, lessened days 8-10, minimal days 11-12, bad day 13, better but still happening days 14-15

-Fatigue days 1-9

-Dizziness began day 3, better day 10, worse again day 13, better but still happening days 14-15

-Difficulty sleeping (4-7 hours), days 1-13

-Thinking more slowly sometimes through day 9

-Difficulty urinating days 3-6
-Dryness? Hands wrinkled up day 3, struggled off and on through day 13

-Headaches, days 2-6

-Shakiness sometimes began day 3 or 4, gone day 10

-Diarrhea days 2-6, took something for it every day

-Puffy face showed up day 6

-Acne showed up day 7, worsened day 9, again day 14

-Weight gain of about 3 pounds

-Indigestion/GERD increased days 2-7, back to normal day 8

-Muscle pains increased daily from day 6ish

-New freezing pain in my upper sciatic nerve--right and left sides. Days 7-9.

-New tingling along the left side of my tongue on day 6, gone, back on day 10, gone

-New pain on left side of face on day 6 only
-New seminumbness on top of right foot began on day 7
-New spasticity in shoulders/upper arms began on day 6, worsened daily through day 11, a little better days 12 and 13
-New numb strip across forehead on day 12
-New freezing pain in palms on day 12
-Numbness back in tongue on day 13
-New burning/freezing pain in right foot day 12? or 13
-New burning/freezing pain on outside of left hip day 13 bad but I think it showed up day 11
-New burning pain in lower back day 13

As to the taper, I suppose I will not know what it prevented, if anything. Obviously I cannot tell what might have happened. So far I have not had any new MS problems when coming off the steroids, except for that upper sciatic nerve pain, which happened two nights in a row (days 8 and 9). And it was significant pain. I do not know what to think about the taper. Is it just prolonging the nasty side effects of the steroids?

So let's talk more about this blood sugar thing. From what I am finding, several problems on the cons list could be attributed to this. Let's redo the cons list, marking symptoms of high blood glucose symptoms in red. And I will mark common side effects of steroids in green. Debbie was telling me about the crashes in blood sugar, so I will go ahead and mark symptoms of low blood glucose, just to see. I will mark them in blue.

Cons:

-Swollen, painful joints began day 4, worse days 5-6, better but continuing through day 10 (so far)

-Blurred vision began day 3, worsened day 4, worst days 5-10

-Vertigo increased (had some, became worse) days 3-7, lessened days 8-10

-Fatigue days 1-9

-Dizziness began day 3

-Difficulty sleeping (4-7 hours), days 1-9

-Thinking more slowly sometimes

-Difficulty urinating days 3-6
-Dryness? Hands wrinkled up day 3-?

-Headaches, days 2-6

-Shakiness sometimes began day 3 or 4

-Diarrhea days 2-6, took something for it every day

-Puffy face showed up day 6

-Acne showed up day 7, worsened day 9

-Weight gain of about 3 pounds

-Indigestion/GERD increased days 2-7, back to normal day 8

-Muscle pains increased daily from day 6ish

-New freezing pain in my upper sciatic nerve--right and left sides. Days 7-9

-New tingling along the left side of my tongue on day 6, gone, back on day 10
-New seminumbness on top of right foot began on day 7

I split the items between two colors if the symptoms were on both lists. How odd that high and low blood glucose can cause some of the same symptoms. It seems like I have as many symptoms of low blood sugar as high. But from what Debbie taught me, the body can vacillate between the two extremes.

Maybe I have dizziness and shakiness sometimes because that is when my blood sugar is crashing. And fatigue. Hm. I am really looking forward to that a1c test. I would love to have steroids as a tool I can use in the future. Sacrificing two weeks to nasty side effects is pretty tough, but if I could alleviate some of them by controlling my blood sugar, that would be great. I would probably be willing to try it again. I am pretty motivated not to accumulate disability.

And just for the record, I remember having many of these same symptoms when I did IV Solu-Medrol (steroids) in September. The main differences between that time and this one are that my blurred vision and dizziness are worse this time, and my painful joints are not as severe this time (I got to the point where I could not bear weight on my left knee last time). Also, I am wondering if that tongue tingling and face pain was about to be the beginning of a rebound relapse, which the steroids cut short. The daily central pain from my left foot is a remnant of the rebound relapse I had last time.

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:

-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

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.

10 Down, 7 to Go

Today was my 10th day on steroids (I am down to 40 mg now), and it was pretty much like the last few. I did have more energy today, despite sleeping poorly yet again. So that was good. I also did not do anything physically strenuous.

My symptoms are still kind of rough, especially vision and joint pain. If anything, my vision is worse today. And I have muscle pain... and spasticity? I definitely have spasticity back in my legs, but I am not sure about my arms.

I seem to be hot a lot lately, or warmer than others around me. I have not been nearly so shaky today as the last week. I had a few bad attacks of vertigo, but just a few. Dizzy sometimes, but less than the last week. I think things are moving in the right direction.

I hate to complain and complain, but it has been really helpful having these comments when trying to reconstruct when symptoms or side effects began and ended. I am planning to send some bullet points to my neurologist and internist when all is said and done.

Alright, I am tired and hoping to sleep, so I will get to my daily data.

Sensory:

-Pins and needles: 4, both legs, also on my butt super early this morning (like 4:00 am)
-Tingles: 1
-Dysesthetic pain: 7, mostly left leg, except for the horribleness in my butt (well, the side of it--sciatic nerves) that was more like a 9 and was bilateral, keeping me up in the wee hours of the morning
-Paresthesias: 0
-Numbness: 3, some tongue problems again, as well as top of right foot and the other usual areas. Left fingertips also having some issues.
-Vision: 4, getting worse because the TV is pretty blurry now. I can make out the closed captions, which are very large, but they are hard to read. And oddly, the pictures on the wall look 3D.
-Nerve pain: 6, mostly left upper back leg--sciatic nerve
-Hearing: 0

Motor:
-Walking: 4, still pretty stiff from the steroids, not sure how much from spasticity, balance, etc. Lots going on.
-Sore muscles: 8, backs of legs (especially tendons behind knees and left hip), backs of arms/shoulders especially right
-Fine motor: 3
-Weak muscles: 5, right weaker than left, at least for my arms. I just tested and can lift my laptop with my left arm but not my right. My legs seem better, though. Maybe because I rested them so much?
-Spasticity: 7, way on up :(

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 5
-Balance: 4, especially hilarious in the dark
-Sleep: 6, about 6 hours
-Bladder: 0? Did not pay attention
-Proprioception: 2
-Swallowing: 0
-A: 0
-B: 0

Emotions: Mostly okay. A few grouchy moments. Yesterday I would have had something to say--I cried several times. I probably need to break down and cry, let out some stress from the week. I am probably disappointed that the steroids have gone the way they have. I did hope for better this time.

Reason for Vision Problems?

Yesterday was such a long day, I did not even think to blog until it was nearly 10:00, and I was tired. I was tired and feeling sick--worse and better. I cannot tell how much is related to the steroids, the MS relapse, or even lack of sleep.

I do not know what to do about my sleep problem. I mean, obviously I am stuck waiting out the steroids, which may be a while, because I still have a week left on the taper. However, I hopeful that it will get better before then, that my body is still working on the large doses of steroids that I took Wednesday-Sunday. I keep thinking, "Tonight will be the night--I will sleep a full night again." Nope, not yet. I went to bed around 10:00, woke up once and went back to sleep (yay!), and then woke up again at 4:00. I have been up since 4:00 am. Darn. I gave up around 5:30 and came downstairs. I have reports to write, so I will get started early and maybe rest later.

So, the eye doctor. I saw Dr. Mindy yesterday for a record-breaking five-hour appointment. Obviously some of that was wait time, but I did have several tests, as well as photography. And she called in a neuro-ophthalmologist to look at me.

You will not believe what these geniuses concluded: My vision problems are probably related to the steroids. Yeah. No kidding. Take steroids, vision goes blurry for a week. Gets better. Four months later, take steroids, vision goes blurry. Believe it or not, I had made the steroid-vision connection on my own.

I might have 6th nerve palsy causing a bit of strabismus, or I might have increased intracranial pressure (although my eye pressure are okay), but most likely problem seemed to be with blood sugar.

That was what I thought the last time I did steroids! I remember that I asked my dad about it, and he said that I had not been on steroids long enough for them to affect my blood sugar that much. Dr. Mindy said that with the high doses I have been on, it is possible. And that they are not suggesting my blood sugar is 400 (which is apparently an insanely high number), but that it is elevated enough to cause osmosis in my eyes, retaining water in the lenses.

Now, this diagnosis is not certain at all. The neuro-ophtho, Dr. Sammy, suggested that I have a test called a1c, which he said can estimate your highest blood glucose level in the past three months based on the amount of glucose tagged to your hemoglobin. Something like that. I am hoping to get the test today.

About five minutes after I arrived home, my VT, Debbie, arrived. It turned out that she had had gestational diabetes with all of her pregnancies, seriously enough that she was injecting insulin during the last one. So she was able to share a lot of helpful information about blood glucose, insulin, and nutrition.

When she described the crash that happens when the glucose level rises quickly and the body overproduces insulin, it sounded familiar. That happens every time I eat candy or dried mango or other sugary stuff. I noticed that my senior year of college, so about six years ago. That kind of fatigue was not as severe as what I am experiencing now, and it did not come along with dizziness, shakiness, or feeling SICK. But with steroids to "help" things along, who knows?

I am looking forward to getting that a1c test and finding out if my bloody sugar has spiked at some point recently.

Dr. Sammy and I discussed my future with steroids. He pointed out that they are a "double-edged sword," both helping and hurting. Certainly seems that way. I was concerned that my vision is worse this time than the last time I did steroids, despite taking half the dose. He said that I can still take steroids in the future, but I might need monitoring. Dr. Mindy said that typically people are monitored by their PCP during a course of steroids. Blood pressure, etc. Grr. I am not monitored except by myself!

If I find that my blood sugar has been high, I may need to do that finger stick thing and monitor it, at least when I am on steroids. And I might need to watch my nutrition. As Debbie pointed out, that will probably help anyway. She was teaching me about eating complex vs. simple carbs. And about eating carbs together with protein and fat to keep the glucose level more even. And smaller meals/snacks. And being extra careful in the morning. Well, I was careful this morning. I saw a donut... no. I saw bread... no. I saw bagels... no. I saw apples... no. I did NOT feel like cooking eggs at 5:30 in the morning. I found a frozen egg and cheese biscuit... winner! 

I am glad that I got up. There is no point lying in bed when I am not tired enough to sleep. It seems like my body wants to go infant style: Sleep five hours at night, up for a few, down for a morning nap, up for a while, back down, get cranky... Pain was kind of keep me up for a while--butt pain, which is hilarious. I mean, it is horribly painful, but the concept of butt pain is funny. Anyway, that burning/freezing nerve pain in my sciatic nerves (which are basically on the sides of your butt) and some pins and needles on my butt kept me up for a while. Then I realized that I was thinking about stuff because I was just not tired enough to sleep. Blah. I think I am going to begin compiling a list of the pros and cons from this round of steroids.

Oh, it is raining! I can hear it. How nice. :)

Steroids Might Be Worth It

I had kind of a rough start, then things got so much better. I thought that I was finally done with the steroid sickness! Nope, it hit again around noon. Oh, well, at least I had a couple of good hours. And I enjoyed them!

I had no vertigo all morning, but it came back in the afternoon. That was disappointing. But my vision is the same as yesterday. I had emailed Dr. Rick and Alyssa about it last night, and they emailed me back (also last night--wow!) to say that I need to see an ophthalmologist, because blurred vision is not a typical side effect of steroids. The upshot is that I have an appointment with an eye doctor (well, third-year resident) tomorrow, Dr. Mindy.

If I can just get through the side effects of the steroids, I think it will be worth having them. I do still have vertigo, joint pain, puffy face... and developed acne today... can't sleep... And of course the vision problems. But my sensory symptoms are back to what they were before this relapse, and my spasticity is way down again. I think when I get enough rest and come down off the steroids, I will be back to where I was. Better than having disability accumulate. Much better!

Sensory:

-Pins and needles: 1
-Tingles: 0
-Dysesthetic pain: 3
-Paresthesias: 0
-Numbness: 2
-Vision: 4
-Nerve pain: 2
-Hearing: 1

Motor:
-Walking: 2
-Sore muscles: 1
-Fine motor: 3
-Weak muscles: 6
-Spasticity: 2

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 1
-Confusion: 1

General:
-Fatigue: 7
-Balance: 4
-Sleep: 8, less than five hours of broken sleep
-Bladder: 1
-Proprioception: 1
-Swallowing: 0
-A: 3
-B: 0

Emotions: I have really tried to stay centered, and I think it has helped. I did get a bit teary-eyed this evening and ended up getting a blessing from my home teacher. I am glad that I accepted his offer. Good decision.