I'm back

[NotALS!]

Everytime one doctor says I don't have ALS, another one says I do. Its been back and forth 7 times. Noone can figure this out!

I just went to MassGeneral and the head of the EMG lab, Dr David, said I didn't have ALS because I improve on antibiotics and IVIG but then he did an EMG and said I DID have it!

How can this be? I feel great, my strength and muscles are improving and so is my breathing. Without IVIG, I was close to needing a diaphram pacer.

What the heck disease looks like ALS on an EMG yet improves with IVIG?

 

[Txgirl]

There are two that I found that would improve with IVIG therapy. MultiFocal Motor Neuropathy (MMN) or CIDP

 

[Txgirl]

O'Leary, 44, first noticed something was wrong in 1997 when he had trouble holding his newspaper while riding on the commuter train. After experiencing recurring cramping in his left arm and hand and seeing a series of doctors over the next two years, he was finally diagnosed by Dr. Robert H. Brown Jr., a leading ALS researcher at Massachusetts General Hospital whose work helped discover the ALS gene.

Brown recommended that O'Leary try regular infusions of intravenous immunobglobulin, IVIG, a type of protein found in human blood that helps to fight off harmful bacteria, viruses and germs. IVIG is not effective for most patients, but it worked for O'Leary.
"Joe is not the only person to respond this way, but the numbers are small," said Brown, director of the Day Neuromuscular Research Laboratory and Muscular Dystrophy Association clinic at MGH and a professor of neurology at Harvard Medical School. "His case has taught that under some circumstances, a trial of IVIG is a reasonable intervention early in cases of apparent ALS."

For the past seven years, O'Leary has received treatment every three weeks, which improves his strength for several days while keeping the disease from progressing. And, with the exception of an occasional reaction to his medicine, he hasn't slowed down. From his home in Holliston where he lives with his wife, Andrea, and their two young children, he commutes to Brigham and Women's where he is project manager of construction -- a job that requires him to always be on call. Until he began promoting the June 18 event just a few months ago, most of his coworkers didn't know he was ill.

 

[Mndsuffer27]

My illness kinda stopped when I was on IVIG for a bit

 

[R9L13026]

What the heck disease looks like ALS on an EMG yet improves with IVIG?

Seems plausible since so little seems to be really known about this disease. It was noticed back in 2001 that PALS with HIV have their ALS symptoms improve when on aggressive HAART regimen. So I have read.

Several people have recently reported improvements after being treated with common anaesthetics. propofol and sevoflurane.

I just read another recent study shows that men who go bald early have a 3 time high rate of developing ALS.

Deanna Protocol has a lot of followers who show improvement if you can get the combination right.

So yes I can believe an IVIG can have an effect.

 

[gumbysuz]

What about Lymes? I just viewed a video called "Under Our Skin." Some Lymes patients presented as ALS or Parkinson's victims.

 

[NotALS!]

I've been going to lyme docs for 3 years and tried every antibiotic and antiparsitic drug available. Most of them helped for a little while, ceftriaxone was the best. Eventually none of them worked. The IVIG has helped tremendously but I'm afraid it too will become ineffective over time.

I don't test positive for lyme, MG, MMN or Cidp but I guess none of those tests are absolutely conclusive. Still hoping for the best. I've been sick for almost 5 years now.

 

[NotALS!]

This is good to hear, thank you. I'm surprised Dr David at MassGeneral didn't know about it.

 

[Txgirl]

What about PLS?

 

[Bad Balance]

You two need your own channel...lol