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Mathew

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I am Mathew, 54yrs old. Just diagnosed last weekend,12/29/13. Went to ER after calling my DR. Telling her losing motion in left hand now. Have lost motion and have weakness in right hand and right foot slapping when I walk. Also now legs getting week and losing balance a lot . Had a app. with nuerologist for first visit scheduled for 2/5/14. Told dr. I can't wait any more. So went in er on Friday , saw a couple of PAs and two nuero-surgeons on duty, then nurerologist came in Saturday morn. They did every test there is to rule out other soures, all tests were good.negative. They all are sure it is ALS. Will set me up for 2nd opinion at Barnes in St.Louis with ALS experts. Meanwhile I'm still working cause don't know what else to do. Job is very demanding, manual labor. I get weak and wore out by end of shift . And really wanting to just spend time with my family. Don't want to waste any more time.... Confused, frustrated, and a little scared. Dr. Thought 1-3 years left but told us its hard to guess progression right now!?
 
do you have sort term or long term disability insurance. if so, your doctor can write a 'do not work excuse for you. a physically demanding job when your balnce is messed up is dangerous to you and your co-workers. the insurance will provide at least some income
 
Welcome to the forum Matthew - but of course, all of us hope your diagnosis is not ALS. The Doctor is right, it is so hard to guess. My husband was told in May of 2000 that he should go home and put his affairs in order (of course he didn't ) In April 2008, he got a ventilator, and is still here today. So basically, if he didn't do the ventilator, he would have lived 8 years with the disease. My advice to you is to find an ALS clinic in your area and hook up with them. Look under Homepage - ALS Association for some basic information, but also support groups and clinics in your area.
About the work. My husband worked as long as he could, and then he figured something out to work at from home. Hopefully your job has short term disability. Luckily, previous ALS people found for the social security laws to be adjusted and if you have a diagnosis of ALS, then in many cases you can start drawing from social security after being disabled for 6 months. Bless you and definitely spend time with your family.
Mary
 
Thanks for your replies! I think I have both, short and long but haven't dug all that out yet . One of those thing you don't ever read thoroughly cause you don't think you'll ever need it ! I also took out Aflac policy through work for catastrophic events. Hope it helps too. And will definitely look for clinics
 
Barnes is a great hospital. I go to the mda/als clinic. I hope it is not als. There is a wealth of information here and everyone is wonderful. Just ask a question and someone will chime in with an answer.
 
Hi Mathew,

so glad to hear you may have disability insurance. if you have both short and long term, maybe you can use the short term for now, until you get a firm diagnosis.

I am sorry you are facing this...your story reminds me of my husband, we went to the ER in Dec of 2006, and they did a bunch of test and couldn't find anything. His neuro apt was Jan. 28, 2007 and that is when he was diagnosed. they said 3-5 years, and he is still going strong at 7 years this month. (maybe not strong, but he is still going!)

You do need slow down and not wear your self out. that is no good for pals and can speed progression. you are right, time with family is the most important. could your company accommodate you for a while with a less demanding job.?
 
Hi Mathew,

Sorry to hear about your symptoms. It is great that you have the insurance, but you can also start collecting your social security right away with a diagnosis of ALS. I would call the social security office and get started with the paper work. A disease like ALS is fast tracked, so it does not take long to get it. MY husband's was approved within 2-3 months and collects that and his short then long term disability. If you were ever in the military you would also qualify for compensation, which is quite substantial, as they have established a strong connection between the military and ALS.

My husband's job was also very strenuous and it only sped things up. I think you should take the time to be with your family and do the things that you can, while you can. Believe me the paper work will feel like your new job.

God Bless You
Paulette
 
Thanks to all ! I knew I could get good advice here! I actually have been reading these forums for a while, was pretty sure myself and symptons were a match for ALs . I'm hopeing ill have help with all the processing . I don't know when I ll stop working, but took me 35 min. to button shirt , button pants, and tie my boots. Exhausting !
 
Called me in this afternoon for another blood test, said my urine sample showed very low levels of copper. Has anyone heard of that?
 
If you are a vet, contact the VA ASAP.

>They all are sure it is ALS. Will set me up for 2nd opinion at Barnes in St.Louis with ALS experts

that is great, as an ALS diagnosis is not easy, so hoping you get rejected from this club :).

Max
 
Welcome Matthew, though I'm sorry that you have joined us, we are an elite group ;)

I know copper has been talked about here, do a forum search on copper, then you can see what people have said and maybe ask directly to some who were on those threads. Great thing about this forum is being able to search back on stuff.
 
Thanks , Max and Tillie !
I didn't think about doing a search, just been reading all the current stuff.
I'm happy to say its looking like I might be getting kicked off your club! Think now it is MMN. Did spinal tap last week and had higher levels of protein than that of a ALS sufferer. Kept me in hospital and did 2 treatments (infusions) of IVIG or IGg my doctor called it. And yesterday noticed a little more movement in right fingers which were pretty much motionless! So haveing a little response to treatments ! Very encouraging! Doc said ALS will not respond at all! So maybe can rule ALS out here pretty soon! Going down to St. Louis tonight for appointment with Nuero-muscular specialist in the morning to see what they think.
I just feel bad , all of you can't get kicked out of this group! God bless you all!

And all newly diagnosed keep hopes up. It's not over till its over !
 
Matthew -

I believe you will be using the M word after your st. Louis appointment.

Couldn't have happened to a nicer guy!
 
I've got everything crossed for you Matthew, we like nothing better than seeing someone get kicked outta this elite club for the right reasons!
 
Good news Matthew. We are still here for you whenever you need us.
 
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