Just starting and lots of ???'s - Muscular Dystrophy Message Board

dkbladez · 01-15-2005, 04:39 PM

Hello,
I am a 31 year black female. I am in the process of being tested for a muscle myopathy. When I first went to my reg. doctor for test, he thought I had ms and then he gave me a blood test and my rheumatoid level was low, so he thought I may have rheumatoid arthritis. I have difficulty walking long distances, I can not get up on curbs, I have a hard time getting up stairs, getting up from chair and the toilet. I was tired all the time, but I blamed that on my 4 kids

. I just was wondering, how long is this whole process. I have been to one neurologist who gave me a emg but he wants to send me to a better neurologist for my muscle biopsy. Will they know what I have after this. Oh and a little history of my family, my father had inclusion cell dystropy and all of his brother had it all. My aunt is fine. My father and all of his brothers except for one has died. I just found out recently that his mother died while giving birth to his last brother and she has ms and no one to us until now, 4 years after my dad's death. So I was wondering could I have ms and what is the major difference between ms and md any help is definely appreciated. I will continue to read to keep myself educated.

Thanks.

michigani · 01-18-2005, 04:00 PM

dk.... (aka Shellette?)

I've seen your other posts. I have LGMD (I am a 43 year old white male). My family also has a history of MD and MS. Strange. The doctors say it's just a bizzarre coincidence. I know MS affects the nerves and the brain so the muscles don't get the signals. In MD the muscles just stop working and shrink away. Often patients appear the same although the diseases are much different.

You wondered about a biopsy. They used to do surgery but lately the proceedure is simpler. They will do it in the doctor's office or as an outpatient surgery. The doctor will freeze your leg with novacain (like at the dentist) then insert a large hollow needle. Then he snips off a piece of muscle about the size of a pea. He will probably take about 4 samples. Three pieces they'll freeze in case new tests are invented within the next 2-3 years. This is exactly what happened to me.

Surf the net and don't be afraid to e-mail doctors you read about. I've done it twice and found out a lot. Also contact your local MDA office. They're great people and are always helpful.

Best of luck !
Mark

dkbladez · 01-18-2005, 04:39 PM

Thanks Mark,
All of your wisdom is definitely appreciated. I will keep this board informed of my progress. It is cold in Virginia today and my body is definitely aching all over

I guess I may have to move to Hawaii

Thanks again,
Shellette

pason147 · 01-19-2005, 10:51 AM

Hey, I'm in Virginia too. We are having snow today.

I was diagnosed with LGMD in 1999 and then they said that I had probably had it about 20 years. I'm still working, but it is getting harder and harder each day.

Keep us posted.

Pat

dkbladez · 01-22-2005, 05:29 PM

Hi Pat,
It was nice to hear from you. Did you have any symptoms 20 years ago? I'm still fairly young

and I'm getting around as much as I can. I have already changed my job. I was a teacher, but that got to be too much and I was totally washed out by the end of the day. I didn't know that I had anything wrong with me at the time. I have a desk job now and I only work part time but I can get just as tired there. These cold days wipe me out, sometime I have to find the energy just to get out the car in the afternoon. Well my new nuerologist has my notes and I'm waiting for her to set my appointment. Is this normal or does this mean I'm really doing bad?

Well I will keep you all posted.

Shellette