Interesting Gut Microbiome results

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Re: Interesting Gut Microbiome results

Postby Luvsadonut » Sat Jun 03, 2017 3:16 am

My symptoms have been slowly progressive since diagnosis 18 years ago, walking, stiffness, fatigue, bowel etc. My neuros used to say I was benign but my new neuro tells me Im SPMS. I work full time (12 hours a day) 5 days a week, support a family etc. My walking is down to about 1/2 a mile, I see an osteopath (who tells me my movement is getting better), go to the gym 4 times a week and have a daily regime of stretches which help. Ive never taken any drugs for MS.

Good that youve found inconsistencies in your gut bacteria compared with the general population, however it would have been better if it was similar to my inconsistencies..nothings easy :)

I mailed Howard Weiner (actually his assistant) http://weinerlab.bwh.harvard.edu/ who apparently knows a thing or 2 about MS and gut bacteria to ask him if he is aware of Verrucomicrobia/Akkermansia but so far no reply...not that surprised as Im pretty sure they're busy and probably dont reply to direct requests from strangers.

I also had a consultation with a FMT clinic who have done FMT with MS sufferers but they dont keep the gut microbia data...argggg...no idea why??? But apparently they are working with the Gut Project team so at least they are heading in the right direction.
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Re: Interesting Gut Microbiome results

Postby David1949 » Sat Jun 03, 2017 9:07 am

Lovsadonut
Thanks for your reply. I don't mean to pry into your personal health issues but may I ask some questions; did you have relapses and remissions in the early phase of the disease? Also how old were you when the symptoms first started? Are you male or female? I can't tell from your screen name.

Congratulations on working 12 hrs a day 5 days a week. That's a grueling schedule. Even people who don't have MS would struggle with that.

David
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Re: Interesting Gut Microbiome results

Postby Luvsadonut » Sat Jun 03, 2017 11:47 am

Hi David,
Ive always found it difficult to classify a relapse, I was diagnosed after seeing the doctor for numbness which only lasted for an hour or so. Ive had similar very small issues but nothing compared to what other people seem to suffer from. Maybe my relapses are subclinical? I was about 27ish when that first symptom happened, there may have been other 'subclinical' or less severe relapses before the 'official' diagnosis. Im male, thanks for the congrats on the work front, although come Friday after 60 hours or so I feel as tho Im being pretty stupid rather than pretty smart :)

BTW - ask away about my health issues, no worries there.

Darren
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Re: Interesting Gut Microbiome results

Postby David1949 » Sat Jun 03, 2017 5:51 pm

Darren
I asked those questions because I was wondering about the Dx SPMS. Your symptoms and progression sound alot like what I've experienced with PPMS, although I think I'm progressing somewhat faster than you. But the age of onset is more consistent with RRMS. And of course RRMS is 2 to 3 times more common in women than men, whereas PPMS is an equal opportunity destroyer which affects men and women at the same rate. Well I guess SPMS is as good a name for it as anything.

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Re: Interesting Gut Microbiome results

Postby Luvsadonut » Wed Sep 20, 2017 8:17 am

Interesting news on the PNAS site - http://www.pnas.org/content/early/2017/09/05/1711235114.full which links a little to my own findings of high Akkermansia via the American Gut Project. Fingers crossed they start to piece the puzzle together.
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