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jhv

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so last week, he was told that the weakness in his arms was probably ALS. He's had MRIs, the test where he is shocked and we're waiting for the results of blood tests. The doctor is a director of an als society here in new york and believes that this is ALS (we're getting a second opinion after the blood work, of course). Needless to say, we're both freaking out, though differently. I took a couple days of work so we could go up to Cape Cod for some escapism, but now I'm back here and back to be so scared.

He doesn't want to think about it at all yet, and I'm not about to force it on him, but should I be starting to make adjustments by adding vitamin supplements, getting both of us in to therapists (psychological as well as the physical one he starts next week), etc?
 

Al

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Hi jhv. Sorry you have to be here but welcome. It is all pretty overwhelming when you are given this diagnosis. Good idea to get second opinions. How long has he had symptoms before the diagnosed.? As for thr vitamins and supplements there are many opinions and ideas on this. If you have time go back in some of the posts up in General Discussion and read back on Glyconutrients and other topics such as CoQ10 Vit E and Vit C. Some people swear by them and others think they are bogus.
Follow your Dr.'s advice and read up yourself to make an informed decision. Only your partner can make the final decision on what his treatment will be. Of course he hopefully will consult with you as you are in this together.
As for therapists that is once again an individual decision. Some of us get by with a support group from the ALS Society. Some need other help.
Some just find the help they need here. We're a pretty loose group and no subject is too far out to get an answer.
Read back and you will be informed and sometimes amused. We can get silly sometimes but as we say" Don't lose your sense of humour." You'll need it.

Just an added thought. If you post up in General Discussion you'll get answers quicker.
 

TBear

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Hi:
Usually, at least here in Canada, a second diagnosis to confim ALS is standard. It probably won't hurt to start some supplements... at least while your partner comes to grips with what he may be dealing with. That could take awhile.
If you are so inclined there are downloads at the ALS Society of Canada site "A Manual for People Living with ALS" it might help you prepare for what may come... on the other hand... maybe you'll both get lucky!

Good Luck

CHeers

T.
 

Granny

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Hi jhv,
My heart goes out to you at this time.
I can hear the confusion, fear and frustration in your words. I think back to the day I was told I had ALS. For the first little while I think you just have to let it sink in, and it will. I did not want, at first, to consider any things I might do to help - medications, vitamins, communication aides, etc. Then little by little, these things seem to make sense and you can deal with them. For the first little while I did not want to look at the ALS Manual, but it became a much appreciated resource.
Guess what I am trying to say is, don't rush things too hard. If he will agree to some vitamins, they can't hurt. Certainally get the second opinion, it just might be positive news. And humor will come back also. Especially if you read the posts at this forum!'
Welcome to what has become a second family to many of us. Post whatever and whenever you like and some helpful soul will get back to you.
Leah (Granny)
 

me

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JHV - we here understand your fears. Last year we had the fear that my husband may have ALS. It seems that he does not but during that time I was wondering the same thing, shouldn't we change his diet, exercise routine, etc. But, he didn't want to talk, think, or act as if anything was wrong. This really frustrated me because I am a "fixer" where he wants to "ignore". As Al says, it really is up to the person dealing with the illness to make their choices. Carol also has some great ideas for helping to persuade, as time goes on. Hopefully she'll see this and give you some pointers. Stick with this group, it's a great place for support. And, I will pray that the 2nd opinion finds it is not ALS. Melissa
 

jhv

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thanks for the replies

after I posted the other day, I had already felt better. your responses only helped more.

as for his symptoms, he has lost a lot of the strength in his left arm and a good deal in his right. His right had also had bouts of cramps one day about 3 weeks ago. the electo test (MVC? - sorry, just learning) showed nerve response loss in both his arms and some in his legs, lower back and chin. The arm thing started happending about 4 months prior. He has also had a hacking cough like he can't get phelgm out of his chest, but he's always been a big cougher - I haven't read anywhere that this is a symptom, but if muscles weaken in the chest that it would make sense that he can't clear it, in my mind at least.

As I've been reading the past few days, I've realized how different the progression is for everyone, but is there a particular route that is worse than others. If it is effecting his chest, is that the worst place for it to start being so close to his lungs?

also, it seems that most peoples nerve loss starts from hands or feet and then moves up, am I wrong about this? his started with his shoulders.

again, thanks for your replies. I'd say you have no idea how helpful they were, but the good thing about this place is that you do.

best,

john
 

Al

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Hi John. I know what you mean about the cough. Excess phlem is one of the fun things about this disease. I usually get it in the evening after eating. Not exactly sure why, but I usually have a couple of good coughs first thing in the morning as well. Weak chest muscles will make the clearing of phlem harder. It may get to the point your partner will need a cough assist machine. It kind of shakes you around to loosen the mucus. I'm not sure which route is worse but of all my weaknesses it is my breathing that scares the crap out of me the most. My left arm and hand are the worst too.
I'm not sure about the nerve loss but the muscle wasting has been progressive from the extremities up.
So once again we are different but similar. That is the hard thing about this disease. If we all presented with exactly the same symptoms it might make it easier to treat and find a cure.
Hope some of this helps out. Take care. Al.
 
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