Looking for Dr. for deteriorating muscles

[Fly4free]

I'm looking for some advice for my DS. She is 43 years old and mentally and physically challenged. She has always had poor muscle tone/control but for the last year or so she has really been deteriorating rapidly. She fell 3 times last week while visiting my parents (she lives in a group home.) Two of the times she fell were while she was trying to sit on the toilet, once she fell while getting out of bed. She does have a walker, but it's hard for her to use in the house since she is not very coordinated. And up until now she had not used the walker except for outside.

At her last visit with the neurologist, the dr. told my mom there are some meds that would help her, but they would make her dopey and drugged up. She is already on lots of meds for her seizures and the dr. didn't encourage the use of more drugs.

I think we should take DS to a different specialist. I'd like another opinion. I'm not even sure what type of dr. we need to contact. My mom will call PCP to ask for recommendation.

I guess what I'm hoping for is someone's input that is familiar with this type of situation. TIA

 

[bouncycat]

which muscle groups are affected? Is it all over? Is it from current conditions? I have a rare type of Muscular Dystrophy, that affects the shoulders, arms, hips, etc. I have what's called foot drop and have to wear AFO's to prevent falling during simple tasks. Has the Neurologist ruled out MD? Of any type? I'm not sure what other type of dr would help, as I see a family practice dr, and a neurologist, and the list of dr's go on, but those are the main 2. I am in a wheelchair part time, no walker at all for now. The best of luck to you, it can be hard when things start to go downhill. I'm only a few days shy of 37, so I know how your DS feels!!

 

[Fly4free]

It is all of her muscles. I have a friend who is a Physical Therapist and a few years ago she said that it looked like DS had some form of palsy. Her muscles seem to be "tightening". She does get pt, but it is not helping.
She also wears a brace on one of her lower legs.
I guess I'm just so surprised b/c I think she is too young for things to be going downhill so quickly. It is so sad .

 

[peemagg]

Could she use something like forearm crutches or rollator walker? I know those help me with my balance and keep me from falling.

I would look into trying to get her to a doctor that specializes in muscular degeneration disorders. I know that they can be hard to find and get into, but keep trying. I also understand what it is like to go downhill fast. I am 41 and trying to find out if I have MS. Don't quit fighting to find out what is going on.

 

[dclfun]

I'm not sure why you posted this question on a Disney World message board? I'm not trying to be insensitive but you might want to seek a message board that involves disabilities in general, or better yet speak with her PCP who should be the one coordinating her care.---Kathy

 

[bouncycat]

It is all of her muscles. I have a friend who is a Physical Therapist and a few years ago she said that it looked like DS had some form of palsy. Her muscles seem to be "tightening". She does get pt, but it is not helping.
She also wears a brace on one of her lower legs.
I guess I'm just so surprised b/c I think she is too young for things to be going downhill so quickly. It is so sad .

Gotcha. I'm not too versed on the palsy side of things, but I do wish her all the best of luck, and I agree with a PP, don't give up the fight!! And, make sure she has a positive attitude, I try to keep that myself, and it does help!!!

 

[Fly4free]

I'm not sure why you posted this question on a Disney World message board? I'm not trying to be insensitive but you might want to seek a message board that involves disabilities in general, or better yet speak with her PCP who should be the one coordinating her care.---Kathy

I realized after returning to look up my post that DisAbilities is in the travel section. I guess I'm a little addicted to the DIS boards. I do get some awesome info here!

My mother did say she would call DS pcp even though she primarily sees her neurologist.

 

[jlcw14]

My Dad sees a musculoskeletal specialist; maybe that would be a specialist who could help? Ask her PCP what he/she thinks. I know it helped my Dad greatly.

 

[brat]

I know the MDA does medical evals for other muscle disorders, they might know something that will help.A point in the right direction if they do not treat what is causing her issues to someone who can would be nice.