Newbie

Hi Rae and welcome to TalkMD,

The lack of genetic confirmation of which type of MD is a familiar story for many of us. It can take time, in my case I have only just found out after over 30 years! In terms of treatments, I don’t have enough knowledge but I would say condition management, things to look out for etc. Are really important and things are advancing all the time.

I imagine it is difficult to coordinate seeing consultants over here and living in Germany. An occupational therapist would be a useful person to advise and support you with day-to-day living but how you would do that I’m not sure. There are information packs available through MDUK that might be of interest.

We will do our best to point you in the right direction, feel free to ask questions. Between us we have a fair bit of knowledge and experience

To answer your question the answer is yes.

A large many people on this site do not have exact diagnoses.

They are changing the descriptors to make these benefits harder to
get but it is usually in a points based system based on what you can
Or cannot do not what exact condition you have.

Hi Rae,
Three boys! They must be a handful! I didn’t know there was a specialist hospital in Münster, that’s not so far away from us. Definitely one to remember.

I’m also in a lot of pain after exercise. Recently I’ve started to take that as a sign that I overdid it. And I must say, if I’m very careful about the amount of activity I do there is less pain. Downside of that is of course that it’s very difficult to stay active… Strangely I can dance for a few minutes, so my exercise is the Just Dance PS3/wii game a few times a week

For me the main muscle problem is burning muscle pain with sustained force or repeated movement (think walking stairs, drying hair, chewing, and sometimes just holding my head up). My physiotherapist said he notices loss of muscle mass in my hands. And when I walk more than say 100m my legs start to feel very heavy, and my walking pattern gets irregular. The other great problem for me is that I’m exhausted 24/7 (brain and body)

I rest a lot on the sofa (I’m not sleepy though, so I watch TV), make some things easier in the house (like ordering the weekly groceries online) and I try to take myself REALLY seriously. As nobody else knows, I’m the one I should be listening to

Can you get someone to help out with the housekeeping and the kids in the next three weeks? Being a happy mom is so much more difficult if you get too tired

genista

hey i could be wrong but i believe that MD uk have a short course online for GP’s and physios to take to help better understand muscular dystrophy. may be worth trying to encourage your doctors to take it.

hi. bit late to this- but wanted to add-

I, too, have a diagnosis of “some kind of MD probably”, and main symptoms were pain for years (very debilitating- took amitryptiline to help and it worked but left me exhausted) which bizarrely has eased off. whether I’m a bit better or just not stretching myself as much outside my limitations I don’t know. my boys are 8 and 11 so a bit easier and less physical now. wanted to add because I too have an autistic child and I too work in a school and have the same restrictions as you are describing- stairs are slow, waking up hill is hard and I’m always knackered. could sleep all day! Drs say it doesn’t cause pain or tiredness (but it does). I was eventually usino a stick as I found I was in less pain that way, and was really feeling I’d progressed in the disability but bizarrely, not I’m feeling I’m managing Better? first time in years. I can walk every day and am a bit quicker getting upstairs. I still can’t get up from a crouch without using my hands to push up and I can’t run. but it’s weird how it fluctuates. I think it’s to do with exhaustion. and when I’m happier Im less tired and overdo it less and feel better. hope you are finding a way through the maze! I’ve been having tests for 10 years and still no closer to an answer! pippa