Husband may have ALS; two brothers do

[AlabamaGal]

Hello, I am new to this board and like so many of you, I am looking for answers and a feeling of belonging. My 48 year old husband has been experiencing weakness in his left hand and arm for a year or so now. A visit to the doctor last year, led to a neuro visit, an MRI, which showed a disc problem in his cervical spine. He was referred for surgery, had the surgery. It has been 8 months, the weakness in his left hand, arm have progressed. Getting dressed (buttoning, zipping, etc.) is very difficult, if not impossible. He can no longer open a pack of crackers or buckle his seat belt with that hand. He has virtually no grip strength or lifting strength in that arm. His right side moves in slow motion. He is extremely fatigued all the time. We returned to the first neuro last week and he is concerned. While doing his exam, he noticed fasciculations on my husband's left chest. I had never known to look for such a thing, so I had never noticed. Then, we noticed the fasciculations were happening all along his left arm and his hand, as well. It is like worms under the skin, a sort of waving action...not like normal muscles twitches, except when his fingers jerk or his arm jerks. I dont see any wasting at this point.
Tomorrow, we go for a EMG at the neuro. He had a ncv last year with questionable results.

His oldest brother has had ALS for several years *slow moving" and now seems to being heading downhill pretty quickly. HIs youngest brother was diagnosed with ALS a couple of years before. Both of them started with hand problems. Both of them have severe wasting all over at this point. The younger brother has progressed slower than the older brother. He does try a lot of alternative meds, accupuncture, etc.

I am looking for support and also to see if anyone out there has a similar story.

Thanks and God Bless.

 

[DouginDet]

Hello AlabamaGal, Sounds like your husband and you are going threw alot right now. I'm sorry to hear that. I don't know that I would worry about ALS at this time. There are so many other things that could be going on especially since your husband has had surgery that could be the problem right there. My brother also has had a neck surgery and was affraid that he was getting or had ALS like myself. He had more symptoms thou. The doctors did rule that out and are leaning towards the neck surgery and pinched nerves. I would like to be updated if your husband gets a diagnosed of anything I pray for you and him that everything will be fine. I have Bulbar palsy an agressive form of ALS I am fine with it and living on my own right now. Take care please let us know how everything turns out. God Bless.

 

[tdamess]

so sorry you's have to go thur this just want you to know my thoughts and hopes are with you what ever way it turnes out

 

[Blubear]

Hi Alabamagal, Welcome to our forum. I am so sorry you and your husband are going through this. When my dad was going through the diagnosis process, they tested him for everything from sleep apnea to stroke...once they did the EMG he got his diagnosis the next day. That is how it is typically diagnosed, although with some people it takes a long time before the EMG will show positive for ALS, or it was just a matter of switching to a doctor who specialized in ALS. I know your fears are all consuming at this point, just try and hang in there and hopefully you will get some answers hun. We are a very close group of people here, and are here if you have any questions or just need to vent. Please let us know how the results of the EMG go tomorrow. You and your husband are in my prayers hun.
Hugs, Kari

 

[irismarie]

so so sorry - and what a sad story! Are their parents still alive?It musts be Hell for them:

HEre's hoping it is something else, friend.
Love to you all

 

[AlabamaGal]

Well, after diagnosis of c-spine myelopathy by a local neuro, Vanderbilt University Neurologists/MND specialists have changed it to ALS. My husband has not worked in over 3 weeks. We have started the SSDI process. It is ridiculous how long that takes. I have been home taking care of child, but now looking for a job. Everything we had -- retirement, medical, vision, dental, life -- was tied to his job. We are devastated and scared. To make matters more confusing, the Vandy doctors said it might also be something called spinocerebellar ataxia...but she said it doesnt matter, he has denervation and fasciculations all over. This did not show on an emg only a month and a half earlier. We have been married nearly 26 years and have a 13 year old and just-turned 17 year old. I just dont know how I am going to make ends meet and take care of everyone.

 

[sharona]

Prayers for all of your family.God Bless
Sharon

 

[brooksea]

Very sorry to here that! Does he not have disability through his employer? Was he fired? I would get a lawyer that deals with disabilities, if so.

I have to tell you, we kinda went through the same thing sort of, as I was not "working," just being a MOM. It was tough, as his company wouldn't get off their butts and get disability rolling and a lawyer told us it wasn't worth the effort to pursue (it was a big company).

With ALS diagnosed, SSDI should be approved within a month and then benefits should be received within six. (of course it seems to vary from place to place) but if you go to the SS website you can get more info. If your local office blows smoke...remind them of the TERI law (terminal illness).

Hang in there! I know it is devastating news, but you have to have hope! We are here for you!

PS - my folks are from the Dothan area (Hartford and Geneva).

 

[Miss]

File for SSDI online. This way, your husband will not have to go in to the office. It will be approved very quickly. We filed on 4/23, it was approved by 5/1, and the medicare card was in hand by 5/15. All will be effective 10/1. In the meantime, we are receiving short term disability through my husband's company. That means we can keep our health insurance at the company's rate until long term disability kicks in (mid October). At that time, we would have to start paying COBRA for the children (15 & 18) and me. The life insurance might be portable. Ours was. It's not cheap, but . . . Check and see if your husband had a long term care policy at work.

You cannot imagine how supportive this group of people are. Ask anything. There is no question too big or off limits. You can vent your frustrations and no one will judge you. We've all been there and are feeling the same things. Our thoughts and prayers are with you.

 

[chriswhit44]

I think the one of the main signs of ALS is the tongue twitch test. Not sure what the medical term is called... but I remember the Dr.'s pricking my Mom's tongue and based on how it responds is a very good indicator that it is ALS.

The diagnosis of ALS is really more of eliminating other diseases... if that makes sense.