Myesthenia Gravis
 

Ihas Dx'd about 2 months ago with MG after being treated for fibroyalgia for about a year. I stopped taking the fibo Rx's for a few days and the pain came back. The MG is so hard to get a grip on. I started the IVIg treatment last week. 2 6 hr days of IV therapy. After 3 days I felt like brand new again but that lasted only one day, since then it has been downhill again. I won't have another treatment for 3 weeks. It is the sleeping disorder, depression, exhaustion and swallowing that really are the issues that get to me. Does anyone else have MG and Fibro?? thanks for listening..
cghaslam:(

Hi, and welcome. It seems to me (this is just my impression from what I've read around here) that a lot of people have an increasingly better response to IVIG. In other words, the first treatment doesn't do much, but the next does more, and so on. I hope that is the case for you.

Abby

I agree with Abby. Hang in there it will get better.
Mike

carolgh. welcome;

I started my monthly IG infusions in March 2009 and never and never experienced any remarkable results within any time frame in between infuions. But over time maybe I have.

Slowly by September 2009 my breathing problems became much less severe even though my diaphram is still weak til this day.

December 2010 was the last time I crashed. 5 days that my muscles were so fatigued I could hardly get out of my chair.

I still have a problem walking even a short distance. My hips get weak and my lower back becomes very painful. My thighs and calves get real sore.

My arm strength in still diminished.

My Neuro told me at my last visit that I am stabalized and probobly will never get any better. I sure hope he is wrong. He is keeping me on the same treatment that I have been receiving. IGIV every six weeks, Cellcept, Mestinon and Prednisne. Maybe he is just tired of hearing me complane and I still have a chance of more improvement.

Anyway it has been a long road and I think expriencing much improvment in just a few months will just depress you.

Hang in there and I hope you will see some positive results down the road.

Tony

PS. By the way, my double vision, ptosis, chewing and swallowing problens went away almost immediately after being introduced to Prednisone. Are you taking Prednisone?

Hi carolgh!
 

I HAVE BEEN BEGGING THE DR'S FOR YEARS TO FIND THE SOURCE OF MY CONSTANT PAIN - SEVERAL OF THEM HAD THE "NERVE" TO CALL IT "PHANTOM PAIN" - EVEN WHEN I HAD A FRATURED FEMUR - AND BROKEN BACK -NEEDLESS TO SAY. I TRULY BELIEVE I HAVE FIBROMYALGIA, BUT HAVE NEVER BEEN DX'ED! THE PAIN NEVER, EVER GOES AWAY AND IT IS EXHAUSTING!:(
THAT COMBINED WITH THE MG MAKES DAYS LOOOOOOOOOOOOOOONG!
ANYWAY, I HOPE YOU GET SOME RELIEF! AND I DO THINK I HAVE FIBRO.......DR'S BE DAMNED!

HUGS!
ERIN:hug:

Erin,
In defense of your doctors "phantom pain" is real pain, just a remembered one that your brain can't get rid of, and is hard, but not impossible to treat. In defense of you, they should be getting you to a clinic that treats chronic pain. There is an interesting article on pain that explains such mechanisms and you might want to print it and take on your next visit: I hope they will let me leave this link, but just incase, I will type out what comes after Doctordeluca.com/Library/Pain/CP1newDisease2K.htm.
nc
Nope no links, but maybe they will leave the typed part in. Well, I will try leaving out the www

MG
 

Hey how are you doing today? I have MG. After my first IVIG treatment, my MG went into remission for a couple of years. Not any more, its worst. I feel as though people dont understand my illness. Until i came to this website today, i thought I was the only one with the illness. I look forward to talking with you more.

SOMETIMES a gluten-free diet will do wonders for fibromyalgia pain (you have to COMPLETELY eliminate gluten from your diet, however; there is no such thing as "gluten lite").

There is lots of information out there on GF foods and the benefits of cutting wheat, barley, and rye from your diet. It's a simple change, and I was amazed at the difference in how I felt after going on it. Have your doctor test you for Celiac Disease, as it is another auto-immune disease (when you have one, you more than likely have others). If you test positive, you will HAVE to go on a GF diet.

However, if you're like me, once you are on it, you will NEVER want to go back to eating gluten. It won't "cure" myasthenia, but it CAN make some of the symptoms less severe in some people.

Hi Nightcrawler!
 

Thanks for the information!:hug:

I was really upset b/c the dr. that told me I had phantom pain managed to break another one of my vertebrae during the exam - brittle bone disease caused by Cushings......
Also, said dr. told me to "give up" - b/c I "had the worst case of MG he'd evr come across" - told him "unacceptable" and left - needless to say - he WAS NOT the dr. for me! LOL!:D

I think most people have problems being dx'ed with MG, and it really upsets me........

Anyway, hope you are feeling GREAT today and thank you for your response!

Big hugs!
Erin:hug:

I am one of those that they have been having trouble diagnosing. I am going to Vanderbilt in October for another work up. I am responding well to pyridostigmine, and there is not much question (at least in my mind) that I have myasthenia, especially since my father and his sister had it, but I do question whether it is autoimmune or CMS. That makes a lot of difference for treatment and the rest of the family. So once again high expectations!

I am so sorry you (and we) have to work around the incompetence of doctors when it comes to this disease. The amount of misinformation and diagnostic resistance is shameful. The local neurologist told me he wasn't a neuromuscular specialist (no need for the disclaimer).

You certainly may have understood what the doctor was conveying. I have left neurologists offices with some strange diagnoses, because I don't think they have coding for "crock."
nc

Yes Nightcrawler I have the same questions. My mother and 2 of her sisters had MG and now I'm pretty sure my sister has it. My treatment has helped but only about 50% improvement. My neuro hasn't even mentioned CMS.
Mike

The immune suppressants do not treat CMS, so seronegative people really should be told about it and tested. I wish they had tested my dad. If MG is rare, then adult CMS must either be highly under diagnosed or extremely rare, perhaps both.
nc

You have to reach a truly excellent, caring, smart and honest neurologist in order to understand how hard it is to diagnose and treat this illness and how limited the diagnostic tools are in differentiating among autoimmune MG and CMS, in less typical patients. Also, how much efforts and patience it takes to achieve even minor improvement. And how hard it is to get approval for less commonly used treatments.

You are probably correct that CMS is both rare and under-diagnosed. Like many other rare diseases, very little efforts are put into improving diagnosis or treatment options of this disease. It is much easier to "force" patients to fit into known "boxes" than to truly try and understand their unique illness.

Will let you know if I have reached that "ideal" neurologist come October. In all my readings on CMS, I haven't found a box that I fit into exactly although I have several " almosts". I also have the confusion caused by being the product of a long labor, fusion of C6-7 with osteophyte above, but supposedly normal cord. I never wanted to be an interesting patient :)
nc

I hope you do (find someone like that).

drs..
 

I know this is a little off of what is being talked about but, my internal med dr. is the one who dx me with MG. I have not seen a neuro. My doc is very intelligent. He started me on pyridostigm 30mg 4 x's daily. But should I see a neuro? I mean I trust this doc so far. I am having an MRI on my lower back for the pain I am having. I know I have MG, but I also think I have something else. Does MG cause lesions in the brain? I have a spot on my brain that has the demyllation disease. I got my CT scan from cking on my thymus. It is ok. Has anyone had it taken out(thymus gland) even if it didn't have a tumor?
I checked my local library, and not to my surprise no books on the subject.
There are so many forums, and I think I go in some and write something, then forget where I was. That is why I usually just read, but a wise person said, you will get more out of it if you participate.....I know that wise person is on here somewhere, but I apologize because I can't remember who it was........I'm glad I found you all tho..

First off Mestinon is like a band-aid. It does nothing to help in the long term. As for the removal of the thymus I think it depends on your age. In older patients it is not recommended. Thymus removal has had very mixed results. The thing about this disease is what works for one person doesn't work on another. I would continue seeing your doctor. Even if you do decide to see a neuro I would stick with the regular doctor anyway. I have 3-4 doctors that I see for various things. But trust and faith in your doctor is important I think.
Mike

I disagree with that. Some people do very well with mestinon for many years.
The big advantage of mestinon is it's excellent safety profile. As opposed to immunomodulating agents.
like you say, the optimal management approach is different for each patient. That is why it is important to have a physician you can trust, who is open-minded enough to stop treatment that doesn't seem to help, and switch to something else.
Some will do very well with a low dose of prednisone or other immunomodulating agents, and some who require high doses for prolonged periods of time may do better with symptomatic treatment, in the long term.
It is really a decision that has to be done on an individual basis, taking everything into account.
I don't know if it has to be a neurologist, as long as it is someone who has a good enough knowledge and understanding of the disease and is ready to take full responsibility, consulting others if required.

Yes, I have both!
 

I was dxd with fibro over 10 yrs ago and live in constant pain. I began having eye issues 2 years ago, but didn't pursue it until it got worse this year & double peripheral vision developed. I was dxd with MG a month ago & currently take mestinon. I continue to take my fibro meds, but they were only ever an "as needed" situation. That pain has not subsided with the addition of mestinon. And I have no doubt about my fibro or mg dxs.

Also, regarding gluten free. I have been GF for nearly 3 years and saw NO change in my fibro. It's very hard as gluten hides in everything and takes a very serious commitment.