Old 10-04-2013, 08:38 PM #1 (permalink)
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Default Five years and going strong

I've been diagnosed with ALS 4 times and seen 6 neurologists. I've had 7 EMGs, 3 MRIs, 2 CAT scans, numerous xrays, hundreds of blood tests and taken tons of antibiotics prescribed by 3 of the best known lyme specialists in the country.

I was still deteriorating, shaking and barely breathing at night until I tried IVIG. The results have been remarkable. I am walking a mile a day and most of the dexterity in my hands has returned.

I would encourage anyone with ALS to ask their dr to try IVIG. Its expensive but worth a shot!
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Old 10-13-2013, 08:27 PM #2 (permalink)
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Default Re: Five years and going strong

has anyone else had such good results with ivig? is it temporary?
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Old 10-13-2013, 08:34 PM #3 (permalink)
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Default Re: Five years and going strong

My husband had his first treatment a few week ago and see a small improvement with his arms. How many treatment did you have, scheduling his next treatment Tuesday.
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Old 10-13-2013, 10:56 PM #4 (permalink)
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Default Re: Five years and going strong

Before I got the official diagnosis my first neurologist put me in the hospital and gave me five quarts of IVIG in 5 days. I did feel a little better but I think that it was just because I had a week off from work & just relaxed in the hospital. When I went back to work the next week I was right back where I started. I did go on to receive 3 more quarts in the following 3 months but it never helped any. At $8,000 per quart my insurance company paid out a bunch for the treatment plus I dropped another $2,000 on the deal. I really wanted it to work but it just was not meant to be.

I'm so glad to hear that this treatment has helped you.
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Old 10-14-2013, 08:32 AM #5 (permalink)
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Default Re: Five years and going strong

If it works, but is expensive, every wealthy person with ALS would be cured.

( IMHO )
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Old 10-14-2013, 12:58 PM #6 (permalink)
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Default Re: Five years and going strong

Bowser,
Agreed. And they have the saavy to read the medical research and spend their money elsewhere!
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Old 10-14-2013, 06:48 PM #7 (permalink)
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Default Re: Five years and going strong

Just to clarify.......IVIG will not cure ALS. IVIG helps with other diseases that present with ALS like symptoms. People who suddenly regain strength or walking ability most likely never had ALS but some other disease with similar symptoms.
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Old 11-03-2013, 06:20 AM #8 (permalink)
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Default Re: Five years and going strong

Quote:
Originally Posted by NotALS! View Post
I've been diagnosed with ALS 4 times and seen 6 neurologists. I've had 7 EMGs, 3 MRIs, 2 CAT scans, numerous xrays, hundreds of blood tests and taken tons of antibiotics prescribed by 3 of the best known lyme specialists in the country.

I was still deteriorating, shaking and barely breathing at night until I tried IVIG. The results have been remarkable. I am walking a mile a day and most of the dexterity in my hands has returned.

I would encourage anyone with ALS to ask their dr to try IVIG. Its expensive but worth a shot!
What is IVIG ?
Please and thanks
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Old 11-04-2013, 02:00 AM #9 (permalink)
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Default Re: Five years and going strong

IVIG is the treatment for MMN (multifocal Motor Neuropathy) which acts very much like ALS. It is also used to treat CIDP (Chronic inflammatory demyelinating polyneuropathy)
My husband was given IVIG on my insistence, as he had a positive AntiGM1, which could indicate MMN. He did have improvement almost immediately where his fasciculations went away, and he had increase strength in his legs. He also had numbness on the outer aspect of his right foot and shin that went away. Unfortunately these good results did diminish for him after 7 months, so we discontinued the treatment.
We were told that he did not have MMN as he would have seen an even greater improvement with the IVIG. I would check out the MMN forum if I were you.
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Old 11-07-2013, 07:56 PM #10 (permalink)
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Default Re: Five years and going strong

I've had every test (including numerous pricey genetic ones) and they all point to ALS. I'm still doing well and have IVIG twice a month. My breathing gets difficult as the week goes on and improves after the infusion. I'm hoping this isn't temporary but I am concentrating on enjoying my improvements for the time being.
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