Hi guys,
I haven't posted in a while because I have been going through some pretty bad things health wise. I had a relapse in my MG 6 months ago and it is now better and pretty much under control (Thank God) but I am having other problems which are not MG related and just can't seem to figure them out.

I have been very depressed and crying all the time from how sick I feel.
My muscles and joints ache, at times my skin on my arms have a burning sensation, my eyes are dry with a grainy feeling ,I have a rash on my eyelid , I feel cold all the time and I am nauseated with no appetite. I just feel so sick inside. It is so hard to explain because the sick feeling inside comes in waves if that makes any sense. Lately I have been sweating at night for no reason and it wakes me up from my sleep. I used to look forward to napping and getting my sleep because it made me feel better but now I actually dread falling asleep because I am either awakened in the night from muscle aches, night sweats or wake up feeling as tired as I did before or feel just plain sick. I have been seeing my doctor about my symptoms. She ran the regular blood tests and also one to check my vitamin levels. Of course the blood tests all show "normal" levels except my vitamin D was low and she told me to take 2000 I.U. per day. I actually felt weaker after taking the pills and I still feel sick. I see her again on the 28th. What else can I ask her to check for?

She did notice that I was depressed because I couldn't help but cry when I told her how I was feeling.

I don't know what is going on with me but something is not right and it's not my MG this time.

I try to stay positive but after feeling sick for almost everyday for the last 6 months, it's getting pretty hard to do. The light at the end of the tunnel gets dimmer and dimmer for me. I am depressed and wonder if anyone else on here with MG is on any type of medication for depression?

I know that Depression medication probably makes MG worse and I never thought I would have to ask that question but I am at the point where it's more than I can handle. No matter how hard I try to be positive, the negativity in my mind just pulls me down deeper and I just feel sicker.

I'm so sad. Sick and tired of being sick and tired.

Shari,

Really sorry to hear you are having such a rough time. When they did your blood work, did they run a complete thyroid panel?

Sue

My doctor said my thyroid was fine but I am not sure if they ran a complete thyroid panel or not. She did run something to test my hormone levels. Is that the same thing?

Hi Shari,

I'm so sorry for what you're going through lately. It sucks to have the MG, but then to have another illness on top of it compounds everything, especially when you don't know what it is.

You mentioned that your MG is under control. What medications are you taking to keep it at bay? Just wondering as it sorta relates to my next question.

Do you have the same rash that's on your eyelids on your hands too? Is it purplish? They probably already did this, but maybe they can test your CPK levels especially in light of your muscle aches...

It's hard to know what to do if you're suffering from depression and have MG. I've often wondered about taking antidepressants and how that would affect MG too...I tend to feel that it would affect it negatively, just because I have taken them before (when I was really young for major depression and anxiety) and I remember the side-effects and how unpleasant they were.

I think that maybe once you figure out what's going on health-wise, that might alleviate the depression a bit, just 'cause it wont be shrouded in mystery anymore...

In the mean time, I hope that you get some answers soon...I'm glad that your doc. tested your vitamin levels- the doc. sounds very thorough! I remember my doc. telling me that vitamin D deficiency is the leading cause of illness in the world (something like that)....It might take some time to get your levels back to normal- that could very well be causing your depression and feelings of illness...


Nicky

Shari, how long since your last IVIG? I researched some of your old posts -- you seemed to suspect that the burning sensation might be related to the IVIGs?

I only had IVIG one time -- for two days. It sent me into a tailspin -- a touch of aseptic meningitis AND -- took me 3 or 4 months to recover. I got depressed, had aches all over, had rashes, a low-grade fever, lost my appetite and weight, was pretty miserable. My pulmo, of all people, said that in people with lots of allergies, this was not all that uncommon. ME -- allergic to the WORLD.

You can DEVELOP allergies -- ever if you tolerated the IVIGs for years.

I have been getting one IVIG dose every two weeks. I was due for one today but called my home nurse and told her I want to wait until next week because my MG is doing better now and I don't think I need it.

I have been going over that in my head for a few months now about the IVIG's. I kept thinking that maybe I have been getting too much of them for too long and it is too much on my system if that makes any sense. I've been getting IVIG's once every two weeks since my last hospital stay in early September. I really wanted to wait as long as possible this time just to see if things will get better.

I am on Mestinon, Cellcept and IVIG. For the past three years I was getting one IVIG every 6 weeks and was doing fine but then in June for some reason out of nowhere my MG flared up, I ended up in the hospital for 4 IVIG's and then again in August for 4 more and then again in September for 4 more and ever since then I have been getting them once every two weeks.

I really wonder if I am overloaded on IVIG's or if it is something else. I am so confused.

MG wise, I really am not as weak as before and doing much better. It's just all this other crap that has me upset. But I really don't have any allergies so I am not sure if it is the IVIG's or not. I take a bendryl and dexamethasone right before the IVIG to prevent allegic reactions.

Shari, has your doc checked your blood for Cellcept levels? A friend in another group had HIGH levels (like 10 times normal) and was having strange symptoms.

How do they check for cellcept levels? I get my blood drawn after each IVIG but not sure what all he checks besides my blood count and electrolytes. I do know that my electrolytes go a little wacky after each IVIG so I have to take phosphorus pills because my phosphorus level drops so low after each IVIG. I think he checks liver, kidney and things like that.

Shari, I'm sorry you are having such a rough time. I haven't done Cellcept or IVIG, so I can't speak about those drugs. I do know that Cellcept can make you lose your appetite and feel nauseated - and give you diarrhea.

Do you have a good primary care doctor whom you can go over all this with? It may "only" be drug side effects but you should never assume that.

If they haven't checked your thyroid antibodies, they should do so. What about your cortisol levels? Your symptoms sound "hormonal" to me. There are a lot of hormones in our body. Cortisol is a fairly powerful one. A deficiency of it can make you feel really awful. It's worth a referral to an endocrinologist for a review of what could be going on.

http://endocrine.niddk.nih.gov/pubs/addison/addison.htm

Your doc probably runs a comprehensive chem panel after the IVIG.

You can always get new allergies, like Jana said!

Get copies of your labs. You'd be surprised at what doctors don't tell their patients.

I opted for not having an antidepressant. By telling you that, I am not saying I am against using antidepressants. I have too many complications that preclude me from using many drugs, including these. I use massive amounts of coping skills, many I have learned from my psychologist. Depression is different for everyone and you should at least get an opinion from a psychologist or psychiatrist.

I hope you can figure out what is going on. It sounds like your instincts are telling you there is something new, whether that is a drug side effect or another stupid disease state. Please continue to investigate with your doctors until you figure it out. If it's a cortisol issue, that can be dangerous.

Annie

Hi Shari,
I am so sorry you are having to deal with all of this right now. I can't speak on the side effects of IVIG but can on antidepressants. I have been on an antidepressant for several years. I take 50 mg daily of the generic for Zoloft. My Neuro is fully aware of it and asked me if it was helping a couple of months ago because I was going through some depression even on the meds and he noticed I was showing signs of depression. I told him helped most of the time but like you said when you don't feel good it is so hard to keep from sliding into a depression. I have left my dose where it was and things are much better now. I still have days where I struggle but it is usually when I have too much to do and I stress over how I will manage if I'm having one of my bad days. I would certainly talk to your Dr. about adding an antidepressant. It sounds like you need it. Alot of people can go on them for just a few months and come back off of them. I am not one of those people. Everytime I try to wean off them my enxiety rears it's ugly head again. My Dr. finally told me a couple of years ago to stop trying to get off of them so that is what I have done. I know alot of people are opposed to antidepressants. I personally call them my sanity pill. I hope you get some answers soon.
Kendra