ecb57
New member
- Joined
- Nov 23, 2012
- Messages
- 1
- Reason
- Loved one DX
- Country
- US
- State
- Nj
- City
- Princeton
Hi. My name is Leni and I'm writing b/c I'm the relative of someone with NMD-this is my first post. I've been helping my relative with doctor visits. Her husband and I are both a bit confused about the "diagnosis" and the information from the doctor. I found interesting the fact that everything was vague and was wondering if that is always the case. For example, if Doctors don't like speculate on this disease or how it would evolve. Just seeking your advice in terms of what to ask or do moving forward.
My cousin is 41 y/old and was just told that she has neuromuscular disease based on her EMG, lab work, MRI, etc. She started with symptoms in May of 2012 and her doctor in Puerto Rico, suggested she visited Dr. Mitsumoto in NYC. I attended her appointment with Dr. H. Mitsumoto in NY Presbyterian. His words were "there is nothing against a diagnosis of neuromuscular disease, but nothing that can confirm it" (very confusing I know). He suggested that she take Rilutek if her insurance covers it, and that there is a new promising drug maybe coming in 1 year.
He basically told her to "work around" her weakness. I asked if it was ALS, and he said that she had "touches" of ALS, that her disease was in the early stages and they will need to continue to monitor her.
He did talk about this being a degenerative disease but how it progressed would depend from person to person. He did not talk about what she could expect in terms of her quality of life, etc, he kind of avoided that discussion.
Is this the normal discussion with a Dr at this stage of the disease? If is not ALS, why Rilutek that is indicated for ALS. Is it truly not ALS or is it the early stages of ALS?
Any guidance , any thoughts will be really appreciate it. If for some reason, I'm posting in the wrong thread, my apologies and please direct me to right one.
Thanks in advance,
Leni
My cousin is 41 y/old and was just told that she has neuromuscular disease based on her EMG, lab work, MRI, etc. She started with symptoms in May of 2012 and her doctor in Puerto Rico, suggested she visited Dr. Mitsumoto in NYC. I attended her appointment with Dr. H. Mitsumoto in NY Presbyterian. His words were "there is nothing against a diagnosis of neuromuscular disease, but nothing that can confirm it" (very confusing I know). He suggested that she take Rilutek if her insurance covers it, and that there is a new promising drug maybe coming in 1 year.
He basically told her to "work around" her weakness. I asked if it was ALS, and he said that she had "touches" of ALS, that her disease was in the early stages and they will need to continue to monitor her.
He did talk about this being a degenerative disease but how it progressed would depend from person to person. He did not talk about what she could expect in terms of her quality of life, etc, he kind of avoided that discussion.
Is this the normal discussion with a Dr at this stage of the disease? If is not ALS, why Rilutek that is indicated for ALS. Is it truly not ALS or is it the early stages of ALS?
Any guidance , any thoughts will be really appreciate it. If for some reason, I'm posting in the wrong thread, my apologies and please direct me to right one.
Thanks in advance,
Leni