[Poetist]

I'm trying to play catch up and get schooled on my body. I have been ordering up records from past hospitals that I have visited.

The process has conjured up some memories of my first neuro with the thick accent that gave me a diagnosis. I'm pretty sure he said I had Charcot-Marie Tooth (CMT), because he was emphasizing peripheral nerve weakness, which I pretty much have.

I fit the bill of CMT in that I have mild scoliosis, fallen arches, and an inward faces foot. In rare cases, CMT affects breathing. I have a big breathing issue that kicks in when I lie on my back. That's CMT I've discovered, but i was not able to move my right arm or leg at the time, which from my finding is not CMT. I totally looked like a stroke victim, except I had my speech and no facial drooping.

After that visit, I was diagnosed with Bells Palsy. I had two more episodes of one droopy eye lid. I eventually went to an eye doctor, who said I had weak ocular muscles in my right eye.

Flash forward a decade, I wake up struggling to breath. I finally get a CT scan to reveal an enlarge thymus. My primary doctor and the radiologist said it looks like I have MG. Two neuros later and the older doctor (who has seen a lot of MG patients) said it appears as if I have MG, and he wanted to put me on Mestinon. The younger doctor didn't do pretty much of anything, so. .

The older doctor said if my symptoms improve with the med, then I have MG. Well, the breathing and the muscle strength have improve with the med. Now, that I have comfortably transitioned to 60mg/3x a day. It's been about 11 months on Mestinon.

Do I have MG? I have weak muscles in MOSTLY one side of my body, but I do feel my lung weaken on the left side and my left knee. Currently, my right eye lid feels heavy, but it does not droop like it once did in the past.

I'm wondering whether I simply have CMT, MG, both, or nothing?

My opinion changes day to day. I think MG is the lesser of the two evils, so I hope it is MG. Plus, if it is not MG, how can my enlarged thymus be explained.


Here's a link that I found interesting; it discusses both study findings of CMT and MG, and MG possibly being more than one disease, not to say that if you have MG you are exempt from all other diseases:

http://www.mdausa.org/publications/Q...tml#more_genes

Plus, this blog really is informative about CMT, and I think some MG posters might also have CMT. Check out what this person with a family of CMT says about the disease:

http://www.kaikracht.de/cmt/english/text_cr1.htm

[alice md]

The answer is definitely yes- myasthenia is not one disease.

The clinical hallmark of myasthenia is muscle weakness (which may be mild/moderate or severe) affecting any voluntary muscle, and becomes (slightly/significantly/extremely) worse with repeat use of this muscle or muscle group.

So, any thing that will lead to increased fatiguability of the muscles upon repeat use can cause myasthenia. It can be an abnormal gene, an antibody related to each and any one of the proteins that are involved in the process of muscle contraction, as long as it does not lead to fixed weakness of the muscle. (in such a case it will be myopathy and not myasthenia).

probably in most patients it is due to antibodies directed at the acetyl-choline receptor. but, it can also be caused by antibodies directed at MuSk (which is a different illness, in the pattern of involvement, response to treatment, prognosis etc). and possibly other proteins (ryanodine, titin etc.)

It may also be due to a genetic abnormality. and in fact a recent study in Norway found that about 1/70 patients who were considered to have seronegative MG, and were treated accordingly (immunosupression, thymectomy etc) were found to have a relatively common mutation in the Rapsyn gene, and not (as previously thought by their treating physicians) refractory autoimmune myasthenia.
There can also be mutations in DOK7 (again a totally different disease), in MuSK (which may resemble autoimmune MuSK MG), and other proteins.

From my experience-most neurologists are very familiar with classical seropositive AchR MG. some are also aware of the clinical manifestations, results of tests and response to treatment of MuSK. Very few know or are ready to agree that there may be other possible antibodies causing autoimmune MG. and about a similar number show any significant interest or understanding of CMS.

I am personally not aware of any association between MG and CMT.

[Poetist]

It can be an abnormal gene, an antibody related to each and any one of the proteins that are involved in the process of muscle contraction, as long as it does not lead to fixed weakness of the muscle. (in such a case it will be myopathy and not myasthenia).

So, if someone has a fixed muscle weakness, in that the muscle is weak 24/7, they do not have MG? Am I interpreting that in the right way?

I have a mild/noticeable weakness that is helped by Mestinon in that the muscles gain strength with the use of the medication.

Otherwise, If I over use those muscles, they become weaker, and I become tired. I've been diagnosed MG, but I come to this board to get a better understanding.

[alice md]

Originally Posted by Poetist

So, if someone has a fixed muscle weakness, in that the muscle is weak 24/7, they do not have MG?

fixed muscle weakness means that the degree of weakness is pretty stable, or that it is steadily progressive over a significant period of time.

fatigable muscle weakness means that there are significant differences in the degree of muscle weakness, which is more like a roller coaster pattern. even improvement or worsening is not a straight line.


I hope this is more clear.

[AnnieB3]

I think it's important to take a step back and identify what has been done so far.

First, what tests were done to confirm you had MG? Looking at a CT of your thymus is not enough, nor is a clinical exam.

Second, MG is all about FATIGABLE weakness, not FIXED weakness. Weakness that comes and goes is more than likely MG.

Now, about CMT. CMT is not diagnosed by symptoms alone either. It would be highly unlikely that many MGers have CMT too. You have to really understand the unique characteristics of each disease in order to understand the differences. And there are definable differences.

http://www.cmtausa.org/index.php?opt...d=66&Itemid=43

In CMT, you can also have genetic testing done.

Peripheral weakness can be caused by many things, as can a more one-sided weakness. Some people with MG have a dominantly weak side. Peripheral nerve problems can be caused by things like a B12 deficiency or a full blown disease state.

Leave all of this up to professionals to ferret out. Write down what exactly your daily symptoms are. Get a 2nd opinion on the MG, if it helps. And get your medical records so that you can FACTUALLY figure out what is going on. Guessing doesn't do you any good. In fact, it may simply contribute to stress and make things worse.

I hope you will get opinions from a couple of doctors. Start with the MG diagnosis, get someone to explain it and go from there. The important thing is to definitively define what is going on with your body, get help for it and do the best you can at living with it.

Annie

[Poetist]

Well, I pretty much said what I said to work things out in my head.

Peripheral weakness can be caused by many things, as can a more one-sided weakness. Some people with MG have a dominantly weak side. Peripheral nerve problems can be caused by things like a B12 deficiency or a full blown disease state.

I received part of my old records (21 years ago) from my very first neuro, and he was thinking pretty much of everything (peripheral neurapathy, MG, MS, and stroke). I just never understand his thick accent. He ran B12 deficiency and that was normal. Nerve conduction test was borderline abnormal and the EMG was abnormal. He indicated I reported that my right eye was at one point hard to open, but it resolves itself in about two weeks. (In actuality, I was later diagnosed with Bells Palsy, because the droopy lid came back, two times.) After about year of this, I stopped going to the neuro, because I could finally lift my leg without as much effort.

Leave all of this up to professionals to ferret out. Write down what exactly your daily symptoms are. Get a 2nd opinion on the MG, if it helps.

Over the span of 22 years, I've seen 5 neuros because I'm that much of a freak of nature. Next week, I will see my 6th neuro.

I really have experience very strong attacks to my body. I was walking one day. The next day, my right side is nearly dead weight. Quickly, I regained strength but it did not return to 100%, but I was okay with that. It was better than the alternative. (No, it was no stroke or tumor on the spine)

Twenty years later, I wake up literally fighting to breath. I was told I had pneumonia and everything else. I demanded they check my chest, and low and behold there was the enlarged thymus. Then, that was the "first" time I heard MG, but I was more concerned with my breathing/removing the thymus oppose to the muscle weakness, that I have lived with for years.

And get your medical records so that you can FACTUALLY figure out what is going on. Guessing doesn't do you any good. In fact, it may simply contribute to stress and make things worse. I hope you will get opinions from a couple of doctors. Start with the MG diagnosis, get someone to explain it and go from there.

I just ordered hopefully my last batch of records, so I can give it to two of my neuros. I am not really guessing. I have just been pointed in so many directions. To this day, I get people saying I should get my (5.7 cm) thymus removed, even the tiny voice in my head, but the doctor said it was not malignant or growing as he initially thought, so it is not necessary. Then, I get doctors telling me I am/I'm not a person with MG, when that is not in the forefront of my mind, so going to doctors have left me with more confusion than solution.

Next week, I am aiming to see the guru of MG in hopes that he can put to rest this thymus issue I have, which I truly believe has affected my breathing to the point that I need medication in order to support the muscles around the lungs.

All I want is to be able to breath without feeling as if the medication is a bandaid for some underlying issue.