anyone been checked out for neuromuscular disease?

[noonoo]

Hi all,

this has to be brief cause my hands and arms hurt. My PCP, who gave me the fibro diagnosis, is now having me tested (via neuro) for Myasthenia Gravis due to significant muscle weakness. Has anyone explored neuromuscular causes of your pain and weakness? The one prob I see with pursuing MG in particular is that it is not supposed to cause pain, just weakness. I have tons of pain in muscles and joints (but have twice seen a rheumatologist who says I do not have an autoimmune disease).

Huh. Any thoughts? having EMG on Monday (and waiting on lots more labs).

Thank you!

 

[1sweed]

I was tested for it years ago because I started out with incredable weakness and fatigue. I had just the EMG done and the neurologist said I did not have MG, because I had no muscle wasting. When I was still searching for a diagnosis my doctors often made comments to me that I had musclewasting in my hands and feet. When I mentioned my weird leg weakness they seemed concerned, however, their personal reports said that I was only depressed and had nothing wrong. Thus I was being lied too.

I hope that your doctors are concerned for your health and not giving you the run around. Good Luck with your testing and I hope you find out what is wrong soon. Just be sure to get copies of your test results and the reports from the doctor PCP, so you can create your own file. That way you know what they think of you and possible diagnosis of your condition.

Have you seen a neurologist yet?

 

[jcairns82]

I, too, was tested for anything and everything, while they were trying to figure out what was wrong. I hope that they are just exploring every option and it's not just trying to appease you.

1sweed, that's just awful that they wrote you were depressed. Unfortunately, I had a similar situation except that my doctor just told me to my face that I was faking and wanted to get out of attending school.

 

[1sweed]

Later on I was told to my face, much worse things. Like did I think I was superwoman or something, because of the strange problems I had with my vision and my muscles. Or did you fight with your husband or your just lazy, you don't want to work. Most times I left their offices in tears and mad because I was not taken seriously. What I felt was that the doctors were just wasting my time and money. I was many different neurologists all over the state of FL, even went to the Cleveland Clinic in Ft Lauderdale and University of Miami. I was given nasty comments and as a result of that type of treatment depression did come to me.

But in the begining of my diagnosis journey all I wanted was to get better so I could go back to work. Give me medication anything, just so I could do my job and earn a living. Doctors can be so cruel, when a bit of understanding and kindness, would go a long way toward lifting our spirits before and after we get diagnosised.

noonoo, I hope you take the time to read all the posts in pain management and find coping skills to help you. Fibro is very painful and there is no test that really can proof you have it. Sure there are several pressure points, but the biggest clue is all tests are normal. So you may already have your answer,

 

[kat744]

I have not yet tested for it and since my muscles have began to feel weak and some mild pain, I will definitely have my doctor check it out.
My worries with these checks is that the end results is usually more drunks and sometimes I get tired of the drugs.

 

[noonoo]

Thanks everyone, for your responses. It is looking like all my labs and EMG are normal, which is good news. Isweed and iCairns82, how horrible to be told such things by your treaters! That just stinks. I am reading up on the forum as much as I can, Isweed, and it is very helpful. I do believe that in the end I will be told it's "just" fibro -- and that is what I'm hoping for so I can just move on and try to figure out a way to live a fulfilling life in this new, limited way. I am hoping to get in soon to see Dr. Don Goldenberg, who is one of the leading fibro docs and happens to work in Boston. (He published a book on fibro about 10 years ago, which I am reading now.) I feel lucky to live where I do, given all the medical and psychiatric issues on my family.

Have a great day if you can, everyone!

 

[1sweed]

noonoo,
So glad to hear that your taking the time to read through the forum. Although, I can hand out coping skills I have tried it is so much better when you can read them for yourself and see if applying them on a day-to-day plan would work for you or not. Not all methods can be used by all people due to allergies and other medication issues. Any changes should be talked over with your doctor or even your pharmacy to be sure that what you want to try is safe for you.

Some alternatives are safe and some are not. Like I found out years ago anyone who has seizures should not use Evening Primrose because the ingredients can provoke seizures in people prone to having them. Also one has to be care not to over do. You know if two work, why not take five.
Some vitamins can be really bad if more is taken then the normal dose. And some can cause problems with meds you might be on.

As you can see I got long winded, lol.., but this forum tries hard not to sugar-coat everything in order to keep our members safe by getting you to really consider all the things that might or might not improve your health.

See you in lots of other topics I hope!

 

[Trellum]

I actually have, the first specialist I saw for my pain was a neurologist. I was facing some sight issues and other weird symptoms, so I was sent to see a neurologist. He found nothing or or an explanation to my pain and my other symptoms. Now I'm at a crossover... experiencing difficulties thinking and remembering things. The other day I was finding a hard time trying to remember where I parked the car... I swear I'd not have been able to find it if it wasn't because my mom was with me!