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-   -   My thoughts on Alan's neuropathy cause (https://www.neurotalk.org/peripheral-neuropathy/216405-alans-neuropathy-cause.html)

MelodyL 02-20-2015 11:32 PM

My thoughts on Alan's neuropathy cause
 
And I know there might be other things like back issues going on, he DOES have spinal stenosis but every back guy who took MRI's and examined him always said "it's not his back".

He was diagnosed Idiopathic (like many of you have been) over 20 years ago. I would keep telling the doctors "His mother had Guilliam Barre Syndrome, maybe it's connected to that?" and every single doctor shot it down.

Yesterday I watched a video on a 26 year old woman who had given birth and 3 weeks later, woke up paralyzed from the neck down and was diagnosed with Guilliam Barre Syndrome. It took her 120 days from day of diagnosis (with all the tingling, and paralysis and pain, etc) through 120 days of intensive treatment which included intensive therapy to get her hands working and the muscles in her legs working. She gradually went from complete paralysis to a wheelchair, to a day outing, to using a walker and at the end of the video she's doing intensive fitness workouts (as if she never had been ill).

Then I began to think. Alan's mother got diagnosed at age 45 with
GB. Alan got neuropathy at age 45. Alan's sister (even when I asked her years ago if she had neuropathy, she would always say no) then years later she would go "Oh, yeah, I have it, my toes are numb, I get trigger point injections, etc.

So (and this just happened in my head) I put the whole thing together.

What if there is a virus that all three of them were exposed to. Alan was 14, his sister was 17 and the mother was about 45. What if the virus in his mom's body caused her to develop GB at age 45? What if the same virus lay dormant in Alan's body all those years. When Alan was around 33 he became ill, had to be hospitalized and they never put a name to it. They called it 'Fever of Unknown Origin". They kept him in isolation for one week. He then came home and rested at home for one month. He had a low grade fever. Kind of like a Mono thing but it was never given a name. At age 45 he developed neuropathy. Years later his sister developed her own version of neuropathy.

Is this a possibility? Might they all have been exposed to a virus at the same time, that entered their bodies, either progressed or lay dormant (or mutated) and could THAT have been what happened?.

Comments??

Thanks Melody

Jomar 02-21-2015 12:04 AM

It sounds plausible to me.
It could have even been something in the home, the water, toxins in that area..
Or perhaps a random genetic thing.. but then some older relatives might have had similar dx's..

MelodyL 02-21-2015 12:10 AM

Quote:

Originally Posted by Jo*mar (Post 1125266)
It sounds plausible to me.
It could have even been something in the home, the water, toxins in that area..
Or perhaps a random genetic thing.. but then some older relatives might have had similar dx's..

I wonder if I might ask his sister if she knows ANYBODY on Alan's side of the family who has had similar symptoms, neuropathy, etc.

Will update if I find anything.

Hope all is good at your end. We are freezing here in Brooklyn, NY lol

Mel

Jomar 02-21-2015 12:25 AM

We are unseasonably warm on the west coast.. Oregon/Washington. I feel for everyone on the east coast enduring those frigid temps..and for such a long time..:eek:

Neuroproblem 02-21-2015 04:35 AM

Hi, Guillan Barre, usually is an acute autoimme condition, brought on by C.Jejuni, or some viral infection. it usually takes days to weeks to show, weakness, pain and parylysis is one of them. If your husband never had any of these symptoms, he doesnt have gb. gb takes days to weeks to become fullblown, then it takes weeks or months to recover, did your husband have a recent viral infection, or C jejuni infection

MelodyL 02-21-2015 03:40 PM

Quote:

Originally Posted by Neuroproblem (Post 1125288)
Hi, Guillan Barre, usually is an acute autoimme condition, brought on by C.Jejuni, or some viral infection. it usually takes days to weeks to show, weakness, pain and parylysis is one of them. If your husband never had any of these symptoms, he doesnt have gb. gb takes days to weeks to become fullblown, then it takes weeks or months to recover, did your husband have a recent viral infection, or C jejuni infection

Hi, never said I think my husband has GB. He has had Idiopathic PN for 23 or so years. He did have a fever of unknown origin 33 years ago and was put in Isolation for one week in the hospital. The reason I originally posted was not that I think he has GB but since his mom had GB and his sister had been diagnosed with neuropathy I thought that perhaps there was a common virus or pathogen or toxin that they all might have been exposed to.

Oddly, his sister just phoned me in response to my query. She said "All I know is that we have a relative in Chicago who had MS but she is no longer living. That's all the info she could give me.

Oh well, it was a thought.

Thanks anyway

Melody

mrsD 02-21-2015 03:48 PM

I think it is possible that he has psoriatic arthritis.

Sometimes the pain, esp in the feet precedes the psoriasis, which may not come at all in some people. Or in others the psoriasis may be dominant later.
Did Alan's psoriasis flare after a flu shot?

This is an autoimmune disease.
http://www.mayoclinic.org/diseases-c...s/con-20015006

The tendons and their attachments are usually affected more than the joints themselves...and his foot pain, could be explained by this.

Lara 02-21-2015 04:12 PM

I had been following your thread Melody and I was also pondering autoimmune dysfunction. Maybe the 3 of them were genetically predisposed and this is the result of a post streptococcal syndrome. :confused:

[ ps I would also wonder about time lines and epidemics at time of mother's illness and later when your husband was hospitalized. Things like that. Just thinking aloud]

Kitt 02-21-2015 04:49 PM

A good site.

http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm

We had two friends who had it. It is also called French Polio. One got it after the Swine flu vaccination which they had to have for their job. Another after being very stressed and sick. The first person recovered quite nicely. The second one not totally recovered. Lasting effects for that one. Could only move the eyes at the lowest point.

MelodyL 02-21-2015 05:52 PM

Quote:

Originally Posted by Kitt (Post 1125375)
A good site.

http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm

We had two friends who had it. It is also called French Polio. One got it after the Swine flu vaccination which they had to have for their job. Another after being very stressed and sick. The first person recovered quite nicely. The second one not totally recovered. Lasting effects for that one. Could only move the eyes at the lowest point.

Hi to all of you.

Alan doesn't remember if his psoriatis came after he got a flu shot. He rarely got them. He got one I believe in the last 7 years.

He does have psoriatic arthritis (his doctor told him this). I never connected it to the pain between his toes. That's where he has the PAIN of his PN. His feet are completely numb.

All these autoimmune things going on. Who the heck knows what is in these vaccinations but when dealing with children and measles, well I guess the parents have to make a decision (for them to be able to go to school)

As for flu vaccines, I won't go near them, and now Alan won't either. We take Colloidal Silver every single day and for YEARS, (crossing fingers as I type this) (I make my own by the way) we have had nary a cold or a virus.

Being that as it may, his psoriasis is now just bright red (no more white thick scaly stuff going on) but that's because he puts cream on twice a day. Nothing is making it go away. He has it all over.

I am going to check out Mrs. D's links. Very informative indeed. Thanks to all of you who responded.

As for the timeline of his mom, his sister and Alan. Sometime (way back in the day), when his mother was 45, his sister was 17 and Alan was 14, they might have been exposed to SOMETHING and I was thinking it might lie dormant (except for his mom) and later on something triggered it in Alan when he was the same age as his mom. As for his sister, I just spoke to her and she said she has never had an emg or a nerve conduction test. I said 'then who told you, that you have neuropathy". She said 'they gave me an MRI" and said I had neuropathy"

I asked her "what symptoms do you have in your feet that made your doctor send you for that MRI? " and she said "My feet are numb" She has no pain but just numb feet.

I do NOT believe in coincidence. Something is going on in this family's gene pool or they were exposed to something.

Thanks to all

Love ya, Melody


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