Worried about husband is rediagnosis possible after many years

Emotional wife

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Hello,
I am worried about my husband and have been aware of this site for many years.

He started having symptoms about 8 years ago. Both UMN (reflexes, absense of reflexes, I think even positive toe reflex) and also LMN symptoms in calf (2 muscles tested positive in EMG in each leg.) Things got very scary at that point but there was no progression to LMN in other limbs, etc. We even went to Houston Methodist ALS clinic where they did days and days of testing. At the end they said BFS and cramping, excitable nerves, and it’s some kind of a systemic zebra but they just don’t know.

That was good news but for the last 8 years he has slowly been getting worse. He still has strength and function but I think he is more stiff. Sometimes he needs a cane, then he moved to rollator and now he is moving on to a wheelchair. He can walk, he still has strength, hands are stronger than mine, no bulbar issues… but his main issue stiffness and horrible cramps. (Also his fasiculations got worse and are even more non-stop than before if that is possible.) But the cramps are so bad that he has torn his chest muscles/abdomen muscles. No joke, we had to go to ER cause it hurt so much. If I push on the sole of his foot he will start to cramp and it travels from foot to his jaws. It’s the pain of standing and cramping that is causing his mobility, pain and general issues. (He also has very sensitive skin, to the touch and stuff). All tests they have done over the years have come back normal or not showing a diagnosis. He had been taking baclofen and now they are upping his dose but it’s not helping and at this point we need to start going to a neuromuscular specialist again to see what’s going on. So it’s probably back to Houston Methodist, among others for answers.
I have 3 questions
- could we be looking at ALS as a diagnosis now after all of these years? I thought after 5 years we were off the hook? (I am not saying this to scare people but with the increase in cramping is it even in the differential after all of this time?)
- what other site are there for resources, dealing with neuromuscular issues that deal with neuromyklonia or other related issues? Bonus point if they have supportive forums like this one.
- what support is there for spouses who’s partners are going through this? It was so hard to go through the diagnostic process the first time. I need to get support beyond my current support networks if I have to go through it a second time. With the stress over the years I have started to twitch and now even my twitches and cramps are going into overdrive. I am twitching than him now.(I feel like the husband of a pregnant woman who get sympathy pains.) I work hard to keep the hypochondria I feel for both him and I, under control. I have knows personally 2 people who had ALS, and also became very informed when we went through the process the 1st time.

If this is not the right forum I apologize, and will not post again. But any resources, information or other support you can provide is greatly appreciated.

TIA
 

lgelb

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Here is a possible neuromyotonia/related disorders forum -- without registering, not sure how active it is. I would work through each of the association web sites also. And there are Facebook groups if you search.

I am not sure it makes sense to talk about ALS per se at this point, but there are certainly more rare motor neuron/neuromuscular diseases than ALS and neuromyotonia, whether genetic or acquired. This is the ALS/MND forum and you are always welcome.

As you say, he began as a zebra and that may never change. If/as applicable, I would certainly try to steer the documentation to something that is benefit-eligible as regards any work-related disability benefits that he may have, as well as Social Security disability. The latter is somewhat of an art form so you may want to consult an attorney whose specialty overlaps. After eight years of progression, a re-evaluation in its own right to rule out anything treatable and to document what is known, is certainly justified. Is he on Medicare?

We are here to support you however we can.

Best,
Laurie
 
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ShiftKicker

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I would like to add, there is an excellent group on FB, you can find it by searching for Isaac's Syndrome.
 

Emotional wife

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Thank you so much. He just stopped working full time, mostly due to this. We will certainly be working with someone to see if Medicare is an option for him, and other applicable options… once if we get some kind of firmer diagnosis.
I will check out the link you gave me.
 
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