Status
Not open for further replies.

deerhuntert6

New member
Joined
Oct 21, 2012
Messages
9
Reason
Loved one DX
Country
US
State
ga
City
columbus
My husband has lost the ability to open jars, hold a pen for writing or to button his clothes.
He has severe fatigue and is no longer able to be as active as he once was. He chokes easily on his food. His NCG showed prolonged distal latency, his F waves were significantly slow and his H reflex failed to respond to stimulation. Stated evidence of "acute muscle membrane instability" His biopsy showed severe nerve damage and moderate muscle atrophy. He has fasculations in legs, upper thighs and arms. His arm and legs look so skinny. His nuerologist says he has alot of issues and placed him on pain killer, zanaflex and gabapentin and told him he would see him again in 6 months. Would really like to hear your thoughts on this.
 
I can't comment on the meds as I'm not on any, but does your hubby have a diagnosis, or is it still wait and see? Have you signed up with an ALS clinic yet? If not, please do so immediately (or VA if hubby is a vet); at the clinic you'll have access to pulmonary, OT, etc. It sounds like with his choking that it may be bulbar, and you'll need to get that under control so he won't aspirate food...

Check out the threads for the peg, bipap, etc. so you can be aware of some aids that are good to have in place before you need them...

Good luck, and hope you find this forum as helpful as I have... and sorry that you had to find us here...
 
Welcome to the forums! So sorry you needed to find us. Sounds like you guys may be seeing your local neurologist and are not being followed in a specialty Clinic sponsored by the MDA or ALSA. Many here have found the multidisciplinary ALS Clinic to be extremely helpful, especially during the early months of diagnosis. They deal with MND patients on a regular basis and are very knowledgeable about the needs of PALS. There have been several good discussions about using the Clinics if you'd like more info.

You posted in the "do I have ALS?" Section of the forum, but your info says that your husband has a diagnosis of MND. Is that correct? You're welcome to open a thread in the other areas of the forum as some members may not find your thread here. Not everyone reads here.

Good luck to you and don't hesitate to ask questions.
 
Welcome Deerhunter
 
Hi

Not sure what his diagnosis is, as a NCV is usually normal in ALS, but at any rate, if he is choking, being seen in six months is just not acceptable.

If he has had an EMG, and they have ruled out MMN, myopathies, and other causes, and ended up with ALS, it's time to find an ALS clinic, sooner rather than later.

Choking presents a serious risk of aspiration pneumonia. This is where something he eats or drinks goes down the wrong 'pipe' and ends up in his lungs rather than his stomach, which can be a deadly infection.

They can give him a PEG, which is a small tube inserted directly into his stomach. He can still eat with it as well. This procedure, if chosen, is best done before its desperately needed.

Please contact the A L S A in your area. They will have a lot of information for you. I get the impression from your post that you were not given very much at all.

If balance or falls are an issue, he should consider using a walker or cane for stability.

You don't mention his age, but if he has been diagnosed with ALS, he is eligible to apply for SSDI, and VA benefits if he's a veteran. Medicare does not have a two year wait for ALS.

I am guessing his neuro now is not a neuro muscular spec ialist? He should, as suggested, see a multi-disciplinary clinic as they can address many issues as they arise.

It's unusual for all areas to be affected at once in ALS unless this has been going on for quite a while. It might help if you gave us a bit more background.

Sorry you had to find us, but we will help however we can.
 
Status
Not open for further replies.
Back
Top