ALS diagnosis..or not

[Meb11]

Hello all.thanx for accepting me. This is a long sorted story. My husband was diagnosed over 7 years ago,in the meantime he was diagnosed with hashimotos disease as well,although it was neglected for over 20 years.
He started out with a sore shoulder on his right,then in mobility. Went to a neuro was diagnosed with ALS. Gave him 2 years.
Now it is 7 years later,saw another neurologist,was told he could grow out of it?? He can barely walk and has no mobility on his right side. What the question I have is this since he has been labeled with ALS,no one will look at his other symptoms..accuse smell,random rashes,loss of vision at times,severe pain,sweats nausea all of which we are told is not related..any ideas on how to get someone to listen?
I am so stressed out,I go to work and then look after him,I feel terrible but I need a much needed break

 

[Nikki J]

Hi sorry to hear

A neurologist told your husband he had ALS but could grow out of it? As get better? Although there are rare remissions this is not advice that is given by neuromuscular doctors



Who are you seeing now? You need to be seeing an ALS specialist and our members from your area will advise you.

Once you are seeing a competent ALS specialist if they confirm the diagnosis they should say what may be atypical ALS symptoms and direct you to your pcp or another specialist for the rest

 

[KarenNWendyn]

It sounds like he needs to see a primary care provider for the other symptoms such as rashes. If the PCP doesn’t seem to be listening, then it’s time to switch doctors.

 

[KimT]

First, I'd get to a primary care for some blood work. Hashimoto's can be pretty benign or very troublesome. I've had it for 20 years and it never game me troubles until it went from slightly hyper to hypo. It's exhausting. Your primary care should be able to do a thyroid antibody test, TSH, Free T3 and free T4 for the complete picture, then decide if it's worth treating. I refused thyroid medicine and treated mine with iodine which brought it back down to the normal range. I still have the antibodies but that's a given.

While you're at it, get all the routine blood tests he needs.

Next, I'd find a good neuromuscular specialist, make an appointment and bring all prior test results, even if they are not ALS related. When he was diagnosed, did they do MRIs of head and full spine? Lumbar puncture?

I've had to be vigilant in getting doctors to look at other things going wrong. It's easy to say, "oh, that's just ALS causing......."

 

[Meb11]

Yes he gets his blood work done every 3 months,TSH,T3 etc..antibodies are still high..been to different neuros as well..they as in the doctors seem to all stick together..they won’t go against the neurologist who made the call,yes he’s had mris and the lumbar test done. We live near Ottawa and even went for a second opinion in Toronto..

 

[Meb11]

Yes he was told by one of the top neuros he could be one of the lucky ones and grow out of it!