Living with ALS

Jim_VA (Jun 14, 2009 2:03:06 PM)
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Jim_VA (Jun 14, 2009 2:07:14 PM)
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rosebud (Jun 14, 2009 3:06:07 PM)
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rosebud (Jun 14, 2009 3:06:17 PM)
hi is anyone chatting today

Jim_VA (Jun 14, 2009 3:06:48 PM)
just me

rosebud (Jun 14, 2009 3:06:58 PM)
hi jim do you have als

Jim_VA (Jun 14, 2009 3:07:22 PM)
yes

rosebud (Jun 14, 2009 3:07:35 PM)
I have been searching for info desperately

rosebud (Jun 14, 2009 3:08:18 PM)
my doc seems to think I have a very rare form of the disease associated with diabetitis I have never head of it and neither has most doc have you heard of it?

Jim_VA (Jun 14, 2009 3:09:06 PM)
no

rosebud (Jun 14, 2009 3:09:23 PM)
he said it was realted to diabetic amytrophy and als

rosebud (Jun 14, 2009 3:10:12 PM)
I started with muscle issues nearly 26 years ago just keep getting worse. right now pain is very difficult can't write well anyore and hard to walk

rosebud (Jun 14, 2009 3:10:30 PM)
As you see I have a hard time typing right I miss a lot of letters

rosebud (Jun 14, 2009 3:10:54 PM)
any idea where to start my search

Jim_VA (Jun 14, 2009 3:11:26 PM)
who is your doctor

rosebud (Jun 14, 2009 3:12:00 PM)
he is a local doc who happened to be researching for another patient and came accross this article. lHe is sending me into boston as soon as possible

rosebud (Jun 14, 2009 3:12:36 PM)
He had never heard of the connection before either until he ran into this professional article

Jim_VA (Jun 14, 2009 3:12:38 PM)
is h a neuro

rosebud (Jun 14, 2009 3:13:07 PM)
No that is why he is sending me into boston I have seen nero's over the years and they can't find it Yet I keep getting worse

rosebud (Jun 14, 2009 3:14:20 PM)
started out falling sometimes pain in neck and legs. Now I have constant pain all over body right eye droops I stumble a lot and have a lot of pain in upper back and lower back have a lot of auto immune diseases

Jim_VA (Jun 14, 2009 3:14:29 PM)
that is good

rosebud (Jun 14, 2009 3:14:44 PM)
good that he is sending me back into boston

rosebud (Jun 14, 2009 3:15:16 PM)
I hope so I/ve been that route had two muscle biopsies and two emg's over the years and yet nothing is telling them what is wrong

Jim_VA (Jun 14, 2009 3:15:22 PM)
yes

rosebud (Jun 14, 2009 3:15:28 PM)
any ideas

rosebud (Jun 14, 2009 3:15:45 PM)
right now pain in lower part of back and spine is horrible

rosebud (Jun 14, 2009 3:16:03 PM)
I feel like my neck is to heavy for body all the time

rosebud (Jun 14, 2009 3:16:12 PM)
my legs go into spasm all the time

rosebud (Jun 14, 2009 3:16:44 PM)
It feels like I am a runner sometimes and have just run a 90 mile race non stop

rosebud (Jun 14, 2009 3:17:06 PM)
stair climbin only leaves my muscles in legs feeling like they are burned

Jim_VA (Jun 14, 2009 3:18:17 PM)
i don't a good doctor up there

rosebud (Jun 14, 2009 3:18:21 PM)
i think I would do almost anything to figure this out because as strong as I've been over the years it is now getting scary and I hate to talk to hubby about it

rosebud (Jun 14, 2009 3:18:47 PM)
did you mean you know a good doc up there

rosebud (Jun 14, 2009 3:19:04 PM)
he is trying to get me into beth israel I think

rosebud (Jun 14, 2009 3:19:09 PM)
a doctor samuel?

Jim_VA (Jun 14, 2009 3:20:34 PM)
that is a good place \

rosebud (Jun 14, 2009 3:20:50 PM)
great it is just about the only hospital I haven't been to y et

rosebud (Jun 14, 2009 3:21:11 PM)
right now I sit here and legs and lower back are in complete spasm pain in horrible

rosebud (Jun 14, 2009 3:21:57 PM)
I think it is the realization that I am having trouble on stairs and trouble walking that is scarring me. I always thought I didn't need an answere but now I am desperate

Jim_VA (Jun 14, 2009 3:22:18 PM)
I don't have pain

rosebud (Jun 14, 2009 3:22:28 PM)
they have always said it was fibromyalgia but I thinkk deep down I new they were wrong.

rosebud (Jun 14, 2009 3:22:35 PM)
The pain is what is so bad.

rosebud (Jun 14, 2009 3:23:03 PM)
My doc said according to the article that is what is different with als and diabetic als is that you have a lot of pain

Jim_VA (Jun 14, 2009 3:24:06 PM)
cramps?/

rosebud (Jun 14, 2009 3:24:12 PM)
I've never heard of diabetic als

rosebud (Jun 14, 2009 3:24:48 PM)
yes when they come in the legs it is horrible mostly in the middle of the night. but I am now having pain all over the body in all my muscles especiall lower back

Jim_VA (Jun 14, 2009 3:24:49 PM)
;/. me either

rosebud (Jun 14, 2009 3:24:55 PM)
right now I sit here in ters with it

rosebud (Jun 14, 2009 3:25:32 PM)
I did find one article that talked about it on the net but forgot to book mark it and can't find it again

rosebud (Jun 14, 2009 3:26:17 PM)
this doc supposedly wrote it and he discovered it from an old english med book. supposedly it is extrmemely rare

rosebud (Jun 14, 2009 3:27:11 PM)
It is getting hard to use hands I love to cook and type and both are getting difficult

rosebud (Jun 14, 2009 3:28:15 PM)
well I had better continue my search on the net before I get real tired and the pain is so bad I can' I really need to find some answeres.

Jim_VA (Jun 14, 2009 3:28:18 PM)
try baclofen

rosebud (Jun 14, 2009 3:28:24 PM)
thanks for listening

rosebud (Jun 14, 2009 3:28:29 PM)
what is baclofen

Jim_VA (Jun 14, 2009 3:29:24 PM)
muscle drug

rosebud (Jun 14, 2009 3:29:44 PM)
I have tried lots I will mention this to him as this is not one I've tried before

rosebud (Jun 14, 2009 3:30:12 PM)
thanks again but back just spasmed out will try and chat again good luck

rosebud (Jun 14, 2009 3:30:15 PM)
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pete46 (Jun 14, 2009 3:47:04 PM)
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pete46 (Jun 14, 2009 3:47:18 PM)
hi jim

Jim_VA (Jun 14, 2009 3:48:06 PM)
Hi Pete

pete46 (Jun 14, 2009 3:49:22 PM)
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Jim_VA (Jun 14, 2009 5:02:51 PM)
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