could ALS be some sort of autoimmune disorder?

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Filmmaker

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I'm asking this only because I read and also noticed that fsciculations stop when the muscle has atrophied. And to me it sounds like for people who have for e.g RA : their inflammation stops when there's no more joints to destroy...
I also wonder how many of us diagnosed with ALS have a close family member with and autoimmune disease... In my family, my aunts have RA.
 
My pals twitchies didnt stop when his muscle atrophied. In fact when he was dying they werent giving him his Baclofen and his body was super twitchy. Kind of neat, as I got fake hand squeezes from him.
 
No RA in my family, but Mom had Parkinson's
 
I think there's a connection, but proving it is another story... my brother has RA, another brother has ulcerative colitis, and my Mom has non-essential tremors... my Dad also had weakness in his legs, said to be a war injury from WWII, but it developed into peripheral neuropathy.
 
Count me in as one who thinks there is a connection between ALS and autoimmune disease. My pALS was diagnosed with Celiac Disease only months before his ALS diagnosis. In one year he went from being a super healthy, long distance runner to having Celiac, Pernicious Anemia, ALS and FTD, and being speechless.

I never want anyone else to go through what we've been through, ever again.
 
my neuro, who does als research, told me that als having an autoimmune disease connection wasa pretty strong possability
 
Well, there is nothing like that anywhere in my family bothsides 350 years of records. Now, if you smoke, you die. But other than that, no premature deaths, RA, or anything else.

I think there are going to be multiple contributiing factors getting similar results. Let's hope the CDC registry shows some trends.
 
No RA in the family, but plenty of neurological disorders! But we have a rare gene flaw.
 
well to be clear , the neuro said it seems like it is going to b you have this and then this contributary and this trigger
guess thats not really clearer
 
I am another person who thinks that they will find auto immune issues in ALS down the road. My husband has CIDP MADSAM and before he was diagnosed with this he had ALS as a differential diagnosis as his symptoms are unusual for even the rare variant that he has. Before he was diagnosed he wound up with an atrophied right hand and lower arm (no thenar muscle left) and drop foot. He was on a steady decline until they decided on his diagnosis and began treating him monthly with IVIG since 2007. He had a long history of irritable bowel issues and diverticulitis which many with CIDP have. He feels that a major infection that he had in 2005 triggered his CIDP. There are some doctors out there that say CIDP is on a continuum with ALS if left untreated. Even with the IVIG he continues to have slow deterioration over the past 5 years.
 
Am wondering why those with the ALS diagnosis are told they may have 2-5 yrs to live. It seems that many live yrs longer often 10-20 yrs. Does having upper motor neuron involvement make a difference to the pace of the progression? If both legs have been involved and are no longer viable is it inevitable it will then proceed to the arms, hands or maybe the trunk will be next. Anyone know? Have heard there are 60+ subtypes of ALS --- true?
 
2-5 years is an average. Some live longer, some not nearly that long. It's a guess.
 
First diagnosis was multifocal motor neuron disease which can respond well to IVIG. Had 10 wks of infusions, very very expensive, took 6-7 hrs ea. wk, once a wk. It may as well have been water. No effect. No change. No slowing of progression of lower extremity muscle loss. Must say tho. haven't been sick since. Have billions of anti immune cells now. Following the failure of success with IVIG was diagnosed with ALS. Am still paying thousands of $$ for the IVIG. Like paying for a car you don't have. But ya have to try everything, whether it works or not. Nothing to lose and may gain.
 
soooooo many unaswerable questions.
 
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