[sham0968]

Is there any other muscle disease besides myasthenia gravis in which your muscles gives out but recovers with rest. Since my early 20's I have had muscles spasms in my neck and back but I managed to keep it at bay by message my back and neck a lot. In 2001 I had thyroid cancer but no other problems with that. In 2006 I started having problems chewing meat because my mouth would get too tired. I had barium swallow done. Everything was fine. In 2010 I started having episodes where my breathing would stop. I crawled to get my son. Oxygen was little low when I got to hospital. They gave me meds but found nothing wrong with my lungs. This episode happened again the next week back to hospital same thing. I have always exercise. I got a exercise bike for my birthday. I started exercising and my legs started going numb. I started falling. When I went to doctor I had weakness in hands and leg. I had emg test and passed it, nothing has showed up in blood work. I have episodes where I start talking like I'm tonged tied. I can not chew meat and at times I can chew fruit or nuts and for a week I could not eat anything and lost 9 pounds in one week. Christmas eve my right arm got tired from moping and I had to rest it for three hours. Christmas afternoon I was reading to my son and my words kept being slurred so I went to ER and they admitted me because they wanted to make sure that I wasn't having a stroke. The neuro doctor there said they were going to keep me and run test but he believed they would not find anything because he believes that I had mg but it would not be found until I have muscle biopsy have had blurred vision, double vision especially in right eye. There have be periods when I am out of breath and will not be doing anything. When I walk too much my legs feels heavy. When I talk too much mouth gets tired. my shoulders and arms gets heavy. I have not been able to write well for a long time. I start out writing fine and then it turns to scratch. I have problems fixing my hair because my hands and shoulders gets too tired. The day after I left hospital my right eye was blurred all day. so this is what's going on so could it still be mg or does other muscles disease fits this description?

[mrsD]

Welcome to NeuroTalk:

Yes, there is inherited mitochondrial disorder (genetic). And some inflammatory problems like polymyositis and lupus. Your doctor can test
for these. Mitochondrial problems occur when the energy producing parts of the cell cannot use glucose or fatty acids properly for energy.

http://mitochondrialdiseases.org/mitochondrial-disease/

This is less common than MG, I believe.

Our helpful MGer's will be along shortly.

[sham0968]

Thank you I will check out that disease. Yeah the doctor came back and said if it was not mg that he believed that I had a genetic muscle disease that runs in my family but did not say what and I am new to this. I tested negative for lupus.

[Stellatum]

Hi, and welcome. I'm sorry you're having so much trouble getting a diagnosis. That's the worst.

Many people who have MG have negative blood tests. First, there are several different kinds of antibodies the doctor could test for, but a lot of times he only tests for the most common kind. Second, some people test negative at first, but positive later on. And then there are also many of us who never test positive--probably because we have a kind of antibody that they don't know how to test for yet.

People who test negative can be diagnosed by EMG, but it's a special kind of EMG called a "single fiber EMG" (SFEMG). Do you know if you had this kind? The doctor inserts needles into your muscles and leaves them there for several minutes while you clench the muscle slightly. There are no shocks. Regular EMG's aren't very good at diagnosing myasthenia gravis.

Most neurologists would give someone in your situation a trial of a drug called Mestinon (pyridostigmine). If it helps a lot, that's pretty good evidence that you have MG.

It sounds like you need to go to a doctor who specializes in diagnosing neuromuscular diseases. Maybe your current neurologist could recommend one. When my neurologist couldn't diagnose me, he sent me to a specialist a couple of hours away who could.

Don't stop asking questions. A lot of your symptoms are certainly consistent with MG.

Abby

[sham0968]

yes it does seem that I have a lot of symptoms with mg. The neuro that seen me said that I need to go to a neuro that has more advanced testing and a muscle biopsy and he put it in the paper work that he gave me. He told me not to give up until I had those tests. He does believe that I have mg. Im not going to quit until I do because I need the right kind of meds. It seems that it is getting worse. I use to do a little exercise but now when I do a little I have problems with my muscles. Today and yesterday I felt like I could not move my legs much because they way a ton. this morning it was worse and I had to run errands, I had to get someone to drive and I have always been independent so that is hard. It is a little better tonight but not a lot. Thanks for your reply.

[limpy]

There is also Lems (Lambert Eaton Myasthenic Syndrome). It behaves a lot like myasthenia gravis, but has a few additional symptoms. I have Lems but was told at first I had mg. A lot of the treatment is the same. In Lems there are antibodies to voltage gated calcium channels (VGCC)s.
My disease was not diagnosed with EMGs or single fiber EMG, but only with antibodies and clinical presentation or symptoms.

[bny806]

If they are planning on a muscle biopsy, have they already done a regular EMG on you to see if that shows any signs of myopathies or anything? Good luck, hope you get to feeling better soon!

[sham0968]

My legs and hands tested weak but I rested it and when I had emg then they were fine and test was good. Which I am glad that it was.