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.


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