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medic_ALS

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PALS
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dresden
Hello, I was diag. with ALS last sept. I was initially told that my foot drop was due to a nerve being compressed. I had two surgerys several months apart for this repair. when things got worse, we did more research. We had my Dr. refer us to the ALS clinic in cleveland where I was diag. Since that time this disease has progressed very quickly. It's very hard to walk now. The atrophy to my leg has made me very unstable. It has moved into my arms now with weakness and pain {mainly at night}

I joined this site to see if I can help anyone with what they are going through. being a paramedic for the last 20 some years I have always helped people and I'm not going to stop now. I have a strong support group through my family and my wife is just wonderful. I have been preparing my children since the beggining of this disease. Some of these ways may help others prepare/deal with the process.

I'm here for everyone because I'm just taking one day at time.
enjoy every day.
Steve
 

Mike27

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Hi and welcome Steve!

Your story is similar to mine in that the docs thought it was a pinched nerve. They didn't do any surgery though, they ran more tests.

My symptoms also progressed quickly at first, which I blame on the stress of the situation. I've since levelled off or plateaued for a number of years.

Have you had a second opinion? Might be worthwhile...
What kind of pain are you having at night? We might be able to suggest some remedies for that.

It's good to hear that you have an excellent support group! That's so important.

Take care Steve!

Cheers
 

vmd

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I am yet to be diagnosed, but since I have all the classic symptoms, I fear the worst. Like both of you, my weakness (in the arms), has progressed very quickly (within the last 2 months). Two months ago I was able to go to the gym and lift weights, now the amount of weight I can lift is a fraction of that which I could then. Within the last 2 weeks, my wrist strength has also declined to the point that I can no longer do the same wrist exercises I did at the gym 2 weeks ago. I am shocked at how quickly the degenerative changes have occurred, although I'm certain some of that is anxiety. Yet, how can anxiety actually decrease strength?

You said that your symptoms leveled off for years? I suppose this is not that common?
 

liz

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Nov 9, 2006
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Hi Steve -

Welcome to the forum. It seems like those of us from the helping professions just can't "turn it off". I'm still having a hard time identifying myself as a "helpee" rather than as a "helper". Here at this forum, though, we get to be a little of both.

Nice to meet you.

Liz
 

medic_ALS

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hi, I have had the second, third, fourth opinion. we went to several specialist, I had the MRI, CT scans " the works as you could say" Thanks for the suggestion though.
The pain at night is the cramping in the legs, then about a month ago my arms started getting tight. at times it feels like they are in a vice and won't loosen. I have quinine sulfate for the cramps. it does help to a degree but the tightness is still there.

Thanks You
Steve
 

vmd

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I also have pain in various muscles, but I always thought it was due to lifting weights and the strain I placed on the muscles (also age). Interestingly, about 4 months before I noticed the muscular weakness on my right arm, I had pain in my right trapezius muscle that was constant while I was standing. If I laid down, it would disappear. Since the traps are not directly responsible for the chest and arm muscles, however, I'm sure that this is coincidental.
 

hope

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Oct 1, 2005
Messages
230
Steve,

It is nice to meet you. I am sorry you have this illness. I think it is very kind of you to offer support to us. We are here for you also, sometimes I do not know what to say to others. Everyone here is so kind and care. This is a wonderful site, my husband and I are so grateful it is here. The moderators are very kind and dedicated to helping us through the pain and suffering.

My husband has als and was diaganosed sepember 1, 2005. He is very ill now. I have watched day by day my loved one suffer with this illness and it truly breaks my heart. We do as you do we live one day at a time, sometimes one moment at a time. My husband started out with the disease being very slow progression but this has all changed and we are now dealing with many challenges. We face them daily with strength and we keep hope in our hearts. Some days I cry so much it is a wonder I can see. I never thought it was possible to cry so much.

Thank again for caring for all of us.

Hope and wife.
 

APC

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Loved one DX
Diagnosis
1/2008
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Ohio
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Lima
Hello

Hi Steve, We're waiting on a diagnosis. We too have been to Cleveland. We are now waiting to see an ALS specialist in Columbus at OSU. He doesn't have muscle pain, fasiculations in his arms. The dr in Cleve. didn't think it was brain related. They were going to wait to do the MRI in 3 mos. I requested to our fam. dr. to do the MRI of the brain now. the results came back with early ALS. Which I'm not sure that can truly happen after speaking with people in this forum. Any insight on your symptoms would be greatly appreciated. Thanks Alice
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
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PALS
Diagnosis
10/2003
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NW of Toronto
Hi Alice. I'd have to say I've never heard of anyone being given an ALS diagnosis from an MRI. I'd be getting a Neuro at an ALSCenter to have a look at those tests.
AL.
 

medic_ALS

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ohio
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dresden
Hi Alice, I agree with AL, I haven't heard of the diagnosis given just from an MRI. I started with a drop foot, the cramps in my legs at night. The atrophy of my leg was slow at first then quickened. Everything has progressed quickly with me, the fasiculations in my upper body then into my face. I have been having the cramps in my stomach as well. There is some muscle loss in my upper body. These are some of the symptoms that have been going on with me. The physical exam at a ALS center is the key I believe.
Let us know how the tests go.
Take Care
Steve
 

Mike27

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280
Diagnosis
10/1993
Country
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State
Alberta
City
Edmonton
Hey Steve and all,
My neuro told me to take calcium for muscle cramps. He also said that the best was plain ol' Tums. I find it works fairly well.

One of the first neuros I saw in Montreal suggested I take massive amounts of anti-oxidants.

The vitamins I was told to take were:

Vitamin C-3000 mg;
vitamin E-1600 IU; and
beta carotene-50,000 IU.
These are daily doses spread all through the day, not all at once.

As I read and researched,I’ve since added:

1 daily low dose aspirin;
triple fish oil-3000 mg;
flax oil-3000 mg;
vitamin B complex;
Co enzyme Q10-300 mg; and
vitamin B12-3000 mcg (sublingual).

I don't have any concrete proof that they work, except that I'm still here, writing. Is it due to the vitamins? I really can't say, but I'll keep taking them.

Just thought I'd throw that info out there...

Cheers!
 

Saubier

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May 1, 2007
Messages
67
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PALS
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US
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MD
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Colora
Hi Alice,

I had an MRI at an ALS Center, but it was just to rule out stroke or tumor as a cause of my speech and swallowing difficulty. Later, two ALS specialists confirmed the DX.

Pappy
 
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