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AlabamaGal

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Apr 19, 2010
Messages
80
Reason
Loved one DX
Country
US
State
AL
City
Dothan
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
 

CAHPAH

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Joined
Mar 1, 2010
Messages
298
Country
US
State
MO
City
Barnhart
Sorry for you worry but understand it completely. Having two family members diagnosed with ALS you know the drill. There will be a lot of testing to rule out any other NMD before they give you an ALS diagnosed. Hope for the best and prepare for the worse. I know you will find lots of help and support on this forum as so many others have. My thougths and prayers are with you.
 

shizzy

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Apr 11, 2010
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29
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US
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CO
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Denver
AlabamasGal,

While I honestly & regretfully do not have any sound advice, I came across your post & just wanted to wish you good hopes on your husbands appointment tomorrow! I too am concerned for my husband.

Please let us know how it goes.

The people here care & you WILL find good support & knowledge. I do pray you wont have to be here long!
 

Birthmark

New member
Joined
May 15, 2010
Messages
2
Reason
PALS
Diagnosis
10/2008
Country
PH
State
METRO MANILA
City
MAKATI
Hi,
i am new to this forum, actually this is my first time to post a reply on a thread re: mnd/als. had been reading/browsing topics almost the whole day trying to figure out what is really the situation of this "disease" . it seems this has no boundary, age, gender (although according to what i learned it is only male that most likely to have this mnd). i was diagnosed with mnd last oct2008 and it was like the end of the world for me and my wife. after the emg test your neurologist will have a picture on what is going on with your husband. i also have an older brother and a younger brother who had shown symptoms of my diagnosis although here in the philippines it is so expensive for us to undergo this test. i am just fortunate to have the resources to seek advice from the doctors here although very few of them are really expert in this rare kind of a disease. mostly my information came from websites / forum like this..and it somewhat enlightens me on how to deal with it..there is no defined cure/medication so far as most are in the trial stages. i learned from a website that there is also a genetic link somehow on those afflicted with mnd and that the genes are being passed on from generation to generation. i will try to find again that link for you to read and maybe it will at least lighten the burden you may be feeling right now if you keep understanding the disease itself. for the last 3 months i had been feeling pain in my left shoulder and had difficulty in moving my hand as it really hurts whenever i used it .. i was thinking about the relation of this pain to mnd. anyway i consulted an ortho doctor and in his findings (xray/mri) although there was noticeable muscle wasting in my shoulder there was also a calcific deposit in between my shoulder bones (infidgement syndrome) that he said causes the pain and limited movement of my left hand. i am undergoing therapy and ultrasound treatment to try to diminish that calcific deposit. i am experiencing improvement after the 5th out of the 10 scheduled session. i hope the normal movement of my hand will return and i will no longer undergo a shoulder surgery. i hope all the best for your husband. in times like this i really appreciate the support coming from my wife in this trying times. the good thing is the more i browse on forums like this i feel better as i know that people care and i am not alone in this kind of life's challenge.
God bless to you and your husband!
 

Birthmark

New member
Joined
May 15, 2010
Messages
2
Reason
PALS
Diagnosis
10/2008
Country
PH
State
METRO MANILA
City
MAKATI
hi,


this is the link i am referring to. regards.


https://www.alsforums.com/forum/als-mnd-research-news/11821-researchers-find-genetic-link-both-types-amyotrophic-lateral-sclerosis.html[/URL]
 

marya

Distinguished member
Joined
May 1, 2010
Messages
115
Reason
Lost a loved one
Diagnosis
0/0000
Country
US
State
TX
City
Houston
AlabamaGal - I'm so sorry for the difficulties you and your husband are going through. I have nothing to offer except support since I am new to the site too. I will say that my husband has had a variety of issues since about 2005 and was not diagnosed with ALS until 4-27-10. I guess it's pretty hard to diagnosed plus they do want to rule out everything else prior to saying ALS. I hope you find the support and help here at the forum that I have. Peace be with you - Mary
 
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