Depression Medication and MG
 

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...

:hug:
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

Depression Medication and MG
 

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

I did see a psychologist yesterday for the first time. She thought it would be a good idea for me to talk to my doctor about antidepressants. She was very nice and I am going to see her on a regular basis.Of course I cried almost all of the session.

It's just so difficult because I never thought that after 15 years of having MG that I would be where I am right now. I had been doing so well for such a very long time and I am having such a hard time with all of this because of how it just came out of nowhere. It's not even the MG that is causing me so much difficulty at this time. It's all this other crap that is sometimes so hard to explain. I just don't understand my body and I really don't understand what is happening right now. I guess this last MG flare knocked something else out of whack in my body. Lucky Me. My chest even hurts to go along with everything else. It's not the MG related chest discomfort but something else. It hurts when I inhale :(

I wasn't supposed to see my doctor again until the 28th but I am going to make an appointment to see her before then and ask her for more detailed tests. I have been in her office so much lately that I am now worried that she will think that I am becoming a depressed hypochondriac. I have to keep at it until I find out what is going on because I shouldn't feel sick on a continual basis like this.

If anyone else has an idea of what she can check for from the list of my symptoms then please feel free to post it in this thread.

I just don't want the stress of everything else to make my MG worse.

Thanks to everyone for your care, responses and listening to me when I need someone to hear me during this difficult time.

Shari, does your doc check your lymph nodes -- under your arms -- your groin -- behind your knees -- the front and back of your neck -- etc.?? Have YOU felt any little lumps??

Anti-depressants and therapy got me though the rough times. I was very depressed and didn't know it (not unusual); my wife at that time was a therapist and told me I needed to do something. It took a few drug trials to come up with a good match for me. Therapy helped and was good to have in place when my wife got sick then died. I went off of anti-depressants before my MG got worse and never needed to go back on them.

Bill

Kendra,
What effect does your antidepressants have on your MG? Of course I am finding something else for me to worry about.... If I get on them, I just don't want to take a pill and end up in a MG crisis because of weakness. But I know that when i wake up crying every day, then something has to be done about that.

Sleep Study
 

Hi Shari,

When I read your description of waking up in the middle of the night feeling sick and even more tired I wondered if you had ever had a sleep study. 35% of people with mg have sleep apnea because we have weak lungs and when we are in REM every muscle is paralyzed except for our poor, weak diaphragms. It's just a thought but for some reason what you said rang a bell with me and reminded me of how I felt before I got a ventilator (bipap) to help breath at night.


Before I was treated, I didn't have chest pain per se just a terrible gnawing weakiness in my sternum area. It doesn't sound bad, but it was torturous. Since being diagnosed with sleep apnea I have never had it again (huge relief). Turns out my sleep study showed that I was suffocating for up to 45 seconds on and off all night long. My oxygen sats were falling into the 60's. That's why I was waking up in the mddle of the night sweating with adrenaline sometimes rushing through my body. I would wake in the morning feeling like the newly dead.

Obviously this is just a thought but I wanted to throw it out to you. I think everyone with mg should have a sleep study anyway since there's a significant chance that an mg patient will have it. Still - just my thoughts.

I hope you eventually can find the answer. There have been some great suggestions here! Try to hold on, I know very well that slide into depression. It's awful.

Ally

Good thinking Ally,

I did have sleep apnea when my MG was active. A CPAP really helped with being tired and waking up, but had no impact on my depression. It certainly is worth while following up on.

Bill

Shari, Since you feel pain when you breathe in, you cannot wait to see a doctor. Especially for women, if you have pain when you breathe in, you need to go to urgent care or the ER. There are a lot of reasons for pain upon breathing, like a PE (pulmonary embolism), costochondritis, pleuritis, coronary artery disease, etc.). You need a doctor to help you figure it out and waiting is dangerous.

You might be having too much immunosuppression. On some people, it is like having chemo. I suspect something else is going on though. A thorough doctor would do rheumatoid arthritis and lupus tests, as a start.

I think you need to document exactly what is going on in black and white. Put headings across a page like: Symptom, description, onset of symptom, when it occurs, does anything make it better.

Then list everything. Let the doctor sift through it. It takes less time for them to read a piece of paper than to hear you say it all. And it might make you remember an important clue that you hadn't thought to bring up.

Bottom line here, at least for me, is that you cannot wait. You need someone to address the pain upon breathing issue right away. And I mean in the next day or two. Or NOW since it has been going on a while.

I hope you can get it all figured out. You need doctors and you need them now though. I'm glad we can support you but that's about all we can do!!!

:hug:
Annie

Annie,
I guess I should have explained the pain in my chest better than I did. It isn't a severe pain but more like the pain and discomfort you feel when you have a chest cold. Only in my case it is without the cold. It comes and goes as does a lot of my crazy symptoms right now. I have taken tylenol for it when it happens and that seems to take care of it until it decides to pop up again. If it does get worse then I will go to the ER.

She usually checks my neck but not anywhere else. I just checked all the places you mentioned and don't feel anything out of the ordinary.

Well, Shari, it may be nothing but women can have a heart attack and have absolutely no symptoms. All I'm saying is that without being checked out, you can't know for sure. Taking a pain med only gets rid of a symptom and may actually cover up something that needs not to be. Get where I'm coming from? All too often we pooh-pooh or put off symptoms because they aren't "severe" yet. There are so many serious conditions that never present in a strong or severe way.

Went to the ER and everything is okay with my lungs. They did blood tests, x-rays, cat scan and a few other tests. But of course they have no idea as to why I am having pain sometimes when I breathe in along with the muscle pain etc. I understand that the ER is there to diagnose illnesses and diseases on an emergency basis but it sure gets frustrating when the doctors runs into the room and says I've got good news...... everything checks out fine and you are good to go. And out the door I go with tears in my eyes feeling just as bad as when I went in.

Don't get me wrong. I am glad that I went to get checked out and am very, very grateful that nothing life threatening is wrong with me but I just want to know WHAT is wrong. I was able to push up my appointment with my primary care physician to Wednesday. I really hope that she will be able to figure out what it going on with this old body of mine. Yesterday there was a Santa parade in the neighborhood close to ours so I took my daughter to watch it. My chest, arms and legs ached so bad from the cold that I was almost in tears and had to sit in the car for most of it.

I know that I won't get the magical answer on Wednesday but I do hope and pray that I'll know something soon so I can feel better, stop crying and finally get a good night's sleep. Not asking for a miracle, just some relief.

I'm done venting.....for now

Shari, I'm glad you went in. Did they check out your heart?

An ER doctor once said to me that they don't do any diagnosing in the ER, they only manage symptoms. Well, how do you manage something when you don't know WHAT it is?!! ;)

I still think that seeing a cardiologist to assess your situation is a good idea.

Symptoms don't happen for no reason. Something is causing them. Let's hope someone can figure it out soon so that you won't have to suffer much longer.

Annie

I don't think I can go on much longer. Each night is getting worse and worse to the point where I actually feel like I am going to die. I just feel so sick. My muscles ache and burn sooooo bad that it wakes me up at least 4-5 times a night in tears. It's starting to hurt to the bone now. My chest hurts like it has a serious cold in it with mucous but nothing is there. I just feel so bad that words cannot explain it. It feels like something is attacking my body and I am so afraid that they will not be able to find out what it is. I kept telling my husband a few months ago that something was different with this last MG exacerbation. Something else was going on besides the MG and it just keeps getting worse. I don't know what my doctor will be able find out because what I feel isn't something that is ordinary. I just feel so sick and can't really explain some of it.
I'm scared.

For those of you who believe in a Higher Being, please pray for me.

Shari, Call your primary doctor's office and get in. They always have emergency appts. available, you just have to "turn up the volume" and let them know how bad you are. I'm scared for you.

They should probably check any inflammatory markers, like rheumatoid factor, c-reactive protein (CRP) and erythrocyte sedimentation rate (ESR). Sometimes CRP and ESR can be elevated when the white blood cell count looks fine, in case you have an infection of some kind.

Did they do a D-Dimer at the hospital? Did you get a copy of everything they did? If not, they should fax it over to your doctor's office.

How long have you been on the Cellcept? You should always look to drugs with weird symptoms. IVIG too.

I wish I could do more to help. You may need a few doctors to help figure this out. Someone HAS TO help you right away. Do NOT wait until after Christmas!!! Will be sending thoughts your way.

Annie

Annie,
I called and am getting in to see my doctor today at 12:30.
They did a D-Dimer at the hospital which was somewhat elevated so that is why they did a cat scan of my chest and they also did a D-Doppler of my legs to check for clots. Everything came back normal.

I've been on Cellcept for 4 years now. I am on 1500 daily now as it was decreased a few months ago.

I am looking for the papers from the hospital which probably won't do me any good though because everything came back as normal except my lymphocytes which are low because of the cellcept I believe.

I am due for an IVIG but am still wanting to hold off because I just don't want to put anything else in my system right now. I hope that my MG won't get too bad without this IVIG. I am in such a quandry.

Something IS wrong and I just have no idea what it is. I am trying to be excited for christmas and not worry my kids but I am doing a terrible job at it because I have never felt so sick in my life. Not even when I was having trouble before I got diagnosed with MG. Never, ever thought I would say that because I didn't think it would be possible but it is.

Thanks for all of your input and help Annie. I really appreciate it even though it my not appear to be so from my depressing posts lately.

Shari

Again, get your cortisol checked!!! It usually has to be done in the morning, after fasting.

Also, Alice mentioned serum sickness to Erin a few posts back. Maybe you have that due to IVIG.

What was your blood pressure? Pulse? I bet they did a chem panel. If not, you have to get than done too.

Some doctors say that a slightly elevated d-dimer is no big deal, and it might not be. But it could also be a sign of inflammation. Did they do your Pro-time (shows blood clotting ability)?

Someone needs to really look at all your "systems" and see what the heck is going on.

I'm glad you are going in. And I didn't even notice any moodiness or bad mood due to depression - only that you REALLY need help.

:hug:
Annie

Shari, What type of CT scan did they do for your lungs ? Was there a contrast dye injected in by IV ? I have a genetic blood clotting disease and have had a DVT and a PE and many of the symptoms you are describing sound like the PE I had. Its a deep ache that burns into your bone. Hard to explain. I am not a dr and don't want to alarm you but you should know. The hospital did my CT scan wrong - and the Lung Dr was absolutely livid after ... somehow I survived but ...take care... cos I have been told that I have to make a big fuss at the hospital if they ever try to do the wrong CT on me in ER like this again.

My next door neighbor's 20/21 year-old daughter died in January. She was taking Yaz for severe PMS -- started having what the docs thought was bronchitis -- Shari, that mucus "feeling" and chest pain is starting to ring a bell. This poor girl ended up dying from a PE -- collapsed in the shower at college -- her roommate, a nursing student, was unable to revive her.

Sometimes it IS a ZEBRA!!

Oh, how awful.... please accept my condolences.

There are law suits going on with this drug... check with Google.

Many young women have been affected with blood clots.

This is just totally tragic.

I'd like to mention that some antidepressants do have anti-cholinergic properties. These would be the TCAs ...or tricyclics or older ones.

But some SSRIs have been known to cause fainting and other orthostatic problems. So do be careful if you go on one. Start slowly with lower doses.

I wasn't able to read the latest posts before I went to the doctors. I am not sure what to think of what my doctor told me. She said that I have Fibromyalgia.... Fibromyalgia?????? She did some pushing in a few areas and I was tender. Mainly only tender on my arms but whatever.

Okay, I have been to see her about 10 times in the last 3 months for various issues I have going on and she has done a lot of blood tests. I forgot about asking her about doing the cortisol test though. She has done a hormone test, thyroid test, vitamin test and all the other normal blood tests(electrolytes, liver, kidney functions, white blood, red blood, etc). She told me today that there wasn't anything abnormal with any of these tests except that my Vitamin D was VERY low. I think she said that the normal range for vitamin D is 40 and mine is 10. :eek: I am taking 2000 i.u of vitamin D every day to raise this.

She prescribed a low dose of antidepressant (10 mg) to help me sleep and to also hopefully alleviate this muscle pain that I am having. She also wants me to go for water therapy. Not sure what to think of this but she has always been a very thorough doctor and one that I really trust. A lot of what she said made sense in regards to the muscle pain, the depression and my lack of sleep. She has been my pcp for about 12 years now but Fibromyalgia is something that never really crossed my mind and I am not sure what to think about it. She wants to see me in two weeks for follow up but if I need to see her earlier then she told me not to hesitate to call her.

I did read another thread on here about Fibromyalgia and MG. I'm still confused about this diagnosis :(

The problem with a doctor saying "but I've done a lot of blood tests" is that if you don't do the right ones, or think the right way, you can miss something.

I think fibromyalgia is one of those things doctors often decide you have because they can't think of anything else. It's a waste dump diagnosis; no offense to those of you who have fibro.

Another thought I had is that immunosuppression will also make a D-Dimer look more normal.

http://www.labtestsonline.org/unders...imer/test.html
http://www.fpnotebook.com/Hemeonc/Lab/Dmr.htm

If your instincts are telling you this is not fibro, that the symptoms started after a certain medication was begun or that all your symptoms do not fit the diagnosis of fibro, then you need a 2nd opinion. You are not offending your doctor by doing so.

She did test your B12, right?

A low vitamin D can cause muscle pain but not usually as extreme as you are describing it.

Get ALL your lab results, from the hospital too. Pull all your symptoms together, when they started, etc. on a list (I know, I'm repeating myself). Then get a 2nd opinion. I can't emphasize that enough. Sometimes when you know a doctor for a long period of time, they can miss things. The doctor I knew for 15 years completely missed my B12 deficiency when I told her I was so tired I felt sick and had to quit my job due to falling asleep everywhere.

Are you tired or is it a lack of sleep?

If you get worse, go back to the ER immediately. I'm sorry no one has truly found an answer yet.

Annie

Annie,
To be honest, I don't know what to think anymore. I just want to feel better. She did test my B-12 and it is within normal range. I wish it was something as simple as that.

It's lack of sleep that has me tired. Not really fatigue when I think about it because when I am up, I don't really feel exhausted but I do feel tired. I just feel "sicky". I hate it that I can't describe it better than that. I did sleep better last night after taking the antidepressant but I did wake up one time. It wasn't due to muscle pain but weakness because I forgot to take my Mestinon before going to bed.Plus maybe the medicene made me a little weaker too.

I still have some muscle discomfort this morning but not as bad as yesterday. It's still here though. I don't know anything anymore. It's been so many months since I felt good that I really don't know what began when and how to explain anything. I just feel like a bumbling idiot.

I am not so sure about the Fibro diagnosis because I am just afraid that it may be something else and it will only get worse if it is not "discovered". I've always been one to worry a little too much but when things aren't right, they just aren't right.

How would I go about getting a second opinion when it involves a primary care physician? I know you get them when it is cancer or something because you already have a diagnosis. Right now, all I have are a bunch of symptoms and all I can say is I have a "sicky" feeling.

I just don't know where to go or what to do really.

You will want to find out the numbers of your B12 test. In the US "normal" is typically very low. If you are below 400-500 you should be taking a supplement every day.

Vit D also impacts depression. There are studies out showing improvements with depression as the blood levels normalize.

I take 4000IU D3 myself.

Here is a link to the newest information, put together at Univ. South California, San Diego Medical school:

http://neurotalk.psychcentral.com/thread92116.html
It is long but it explains alot.

Once your depression lifts, you will feel less pain. The two are connected.
Other things that improve depression are folate, and DHA (this is a long chain fatty acid in fish oil).

What was the drug your doctor gave you? Elavil (amitriptyline)?
This drug has anticholinergic effects...not good for MG patients.

Shari--- are you using any osteoporosis medications like Boniva?
Those drugs can cause muscle pain as a side effect.

Oh no, everything is be becoming such a big mess, My doctor gave me nortriptyline. It must be in the same class as amitriptyline. With everything else going on, I don't need to make my MG worse. What anti-depressants are safe for MG'ers to take. I guess I need to call her and tell her. Hopefully she can call something else in for me today. It felt good to sleep last night and I didn't have much of a mg reaction to it so I thought it was okay. I just hate taking new medication because I never know what it will do to my MG.

I don't take any osteoporosis medications. I do take a VIT B-12 supplement everyday. 1000 mcg.The kind that disolves under your tongue.

I know that depression makes everything so much worse and I hate that I have allowed myself to get to this point. I have to get my vitamin D up for sure now. I cannot stay in this state of mind.

Oh, another question. When I took the vitamin D pill I could have sworn that shortly after I felt somewhat weaker. Is there any way that could happen? Maybe my body is so low that it is shocked to have more of it. I am taking 2000IU every day but have only been taking them for about a week and a half now. I'm probably so low because I haven't gotten any sun for the past 6 months since I have been ill and in the house so much. Plus I live in Ohio where it is always so cloudy even in the spring and summer.

Also, does anyone know if water therapy is good or not good for MG?Has anyone tried it before?
(I would start a new thread but it is part of what my doctor wants me to do for the "fibromyalgia")

At 10mg nortriptyline may not have much of an effect.
It is sort of like some antihistamines which also have a mild anticholinergic effect. If you have blurred vision or dry mouth, that would be a sign of the anticholinergic effects.

You should do the B12 on an empty stomach. Not much is absorbed under the tongue...the rest you swallow with your saliva. If food is present, the microgram amounts are absorbed into the fiber of the food and cannot be passively absorbed into the blood stream.

The SSRIs may be safer, but you'd have to ask your doctor, etc.

I can't say about the D.... I get no side effects from it at all.
People vary. I would make sure you are taking it in a liquigel form and not dry powder. Since D is oil soluble it is better absorbed from the oil.

I misunderstood. I thought anticholinergic effect meant weakness. My vision wasn't affected after I took the medicene. I didn't have dry mouth either. I just woke up in the middle of the night with weakness in my arms and legs which is kind of hard to know if it was from the medication or just from my MG. I still put a call into my doctors office just in case.

I guess I am doing a lot of things wrong here. I am taking a pill form of vitamin D, not the liquigel. I'll have to get correct type.

Thanks for letting me know.

Shari, I am going to say this AGAIN. Write down ALL of your symptoms, when they happen, how bad they are, what makes them better, etc.

Looking back at your post, I do not believe this is "only" fibro. Yes, some of your symptoms may fit that, some may fit depression, some may fit a Vit. D deficiency.

And here's a question (okay, more than one). You live in TN. OOPS, sorry. You just corrected me . . . Ohio. ;) Do you never go in the sun? Why do you have a Vit. D deficiency in the first place? Have you been checked for celiac disease? Do you drink milk or eat dairy? Has your parathyroid level been checked?

And I do believe you need your cortisol level checked. ASAP.

http://www.nlm.nih.gov/medlineplus/e...cle/000357.htm
http://autoimmunedisease.suite101.co...linsufficiency
http://www.labtestsonline.org/unders...s_disease.html

The rash on the eyelids could be cellcept. The grainy eye feeling should be checked out by an eye doctor with a tear duct test (Schirmer's test).

http://www.nlm.nih.gov/medlineplus/e...cle/003501.htm

I also wonder about your glucose but that has probably been checked. When you get weak at night, is it better if you take Mestinon? Food?

I have had a lowering of my cortisol a couple times, once after pneumonia and another time after a long plane trip. It involves feeling out of it, agitated, sweating, extreme fatigue, drop in blood pressure (usually) and lots of other symptoms.

I know it's hard but try to explain, if only to yourself and on paper, what the "sick" feeling is.

You are the one who has to get a handle on exactly what is going on! ;) Then you can figure out what kind of doctor you can get a 2nd opinion from. It can be another internist or a rheumatologist (who also deal with side effects of immunosuppressants). And get that d-dimer rechecked.

I'm having a nagging feeling that something is being missed. It's not all adding up for me. I'm not a doctor, more like a bloodhound with a scent. ;)

I hope you can get it taken care of soon!!! I know that all of this is overwhelming, especially because you feel so horrid. That's why writing it all down will help. It "objectifies" it and lays it all out. Things are often easier to think about when we "look" at them than when we "think" about them! At least it helps me.

:hug:
Annie

I did a little searching for you about tricyclics and MG.

I found a place where a doctor answered this question.
He stated that the tricyclics typically do not interfere with the neuromuscular junction, but do have side effects that are anticholinergic depending on the person's individual situation. His final thought is to consult your doctor, and/or get another opinion, if in doubt.

Annie,
I live in Ohio not TN. Ohio does have sun but we also have a lot of gloomy, cloudy days. I can realistically say that for the past 6 months I have barely ventured outside my house because I was so sick either from MG or the other things that have been going on with me. I have gone weeks and weeks without going outside at all or only for a few minutes due to the sickness and depression. So I'm sure that that could have a lot to do with my vitamin D deficiency, Maybe not all of it, but some of it. I've never been tested for celiac disease. I don't drink a alot of milk or eat much dairy products really. Not because I can't but because I am trying to eliminate as much meat and dairy products and eat more of a vegetarian diet. That is a work in progress because I am not eating a lot these days anyway. I meant to ask my doc about the reasons why my vitamin D is so low and that would have probably led to her explaining reasons thus I would have asked her to do certain tests to see if that was why. But I was so thrown off by the Fibro diagnosis that my mind went blank.I don't know what a parathyroid test is so I am sure that I probably haven't had that test either.

My doctor did check my glucose and I don't have a problem there. As far as the weakness at night goes. sometimes I am awakened by it in the middle of the night and usually it is due to MG so I have to take a mestinon when that happens. I do not take the time released mestinon because I did take it once before and for some reason it made me feel awful so I will not take it again. I just deal with the weakness and when I am bothered I wake up and pop the regular mestinon. That usually solves the problem.

I started writing down things and will continue to do so. I am also going to ask my doctor about the cortisol test on my next visit with her.

I really appreciate all of your advice because I would have no idea to ask her about the things you mentioned if you hadn't told me about them.

Has anyone ever seen a holistic doctor? In addition to the regular doctors of course