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Old 02-15-2016, 02:15 AM #41
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[QUOTE=en bloc;1199267]I have Sjogren's and found that IVIG has not only helped my immune deficiency and peripheral neuropathy caused by this (to some extent), but some of my cardiac aspects of AN have improved as well.
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Did IVIG and Rituximab affected your NMH ?
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Old 02-15-2016, 08:32 AM #42
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NO, I can't say that my NMH has notably 'improved'. But I don't have as many flares where I get increased symptoms, etc. So best way to describe is that I am more stable since receiving the higher doses of IVIG. Still have NMH, just more stable.

The cardiac symptoms that have improved are my arterial vaso-spasms from AN. And I have actually stopped (completely) one of my cardiac meds for this. I'm of the mindset that anytime you can get rid of a cardiac med, it's a good thing!!

I have not ever taken Rituxan/Rituximab.
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Old 02-15-2016, 03:36 PM #43
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Some more 2cents here. I've dealt with a history of constipation and I can't imagine not taking extra magnesium and Vit C thru the day...keeps me moving fine NOW. Add a few prunes thru the day. And ENOUGH room temp clean water.

DGL addresses reflux, gerd, heatburn and I'm taking it over 4 yrs now. I don't have the 3 issues but did get a stomach ulcer from a pharma drug in the 80's....so DGL protects my stomach. I think I have a DGL post in vits/herbs section here.
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Old 02-16-2016, 10:29 PM #44
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Quote:
Originally Posted by caroline2 View Post
If it wasn't for the naturopath giving me suggestions for the BURN I've lived with for 5 yrs from femoral nerve damage, I'd still be living with the burn. Bad enough I live with the numb thigh, but the BURN is gone. She gave me 4 suggestions and I chose two and did my research and ordered what I wanted to try.
Hi Caroline, Aside from the grape seed extract, what were the "four suggestions" the Naturopath gave you? I also get bad burning up and down my legs, and under my feet. along with buzzn and pins and needles. I am going to order the grape seed extract as you suggested in a few of your posts.
I see you have Fibro. Is there anything else you take or can suggest for the pain of Fibro or SFN?
(I have read that people that suffer with fibro may have neuropathic pain and not know it, I often wonder about that)..

Last edited by Jomar; 02-16-2016 at 11:15 PM. Reason: added [/QUOTE] to fix
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Old 02-16-2016, 10:43 PM #45
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Lightbulb 2cents & constipation/Miralax

Quote:
Originally Posted by caroline2 View Post
Some more 2cents here. I've dealt with a history of constipation and I can't imagine not taking extra magnesium and Vit C thru the day...keeps me moving fine NOW. Add a few prunes thru the day. And ENOUGH room temp clean water.

DGL addresses reflux, gerd, heatburn and I'm taking it over 4 yrs now. I don't have the 3 issues but did get a stomach ulcer from a pharma drug in the 80's....so DGL protects my stomach. I think I have a DGL post in vits/herbs section here.
Caroline, you should try one or two doses (cap-full) of Miralax a day. My Gastro told me to try it back in 2003 for IBS-C. He said Its safe to take everyday even though its considered a laxative. It works great!, no side effects and does not cause bloating like Metamucil. I'm sure I'll be taking it for the rest of my life. I also take Magnesium tabs everyday , but for other reasons..
It comes in a generic (much cheaper), or have your Doctor (PC) write you a script for it and just pay your pharmacy co-pay, like I do!

Last edited by Jomar; 02-16-2016 at 11:13 PM. Reason: added [/QUOTE] to fix
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Old 02-16-2016, 11:01 PM #46
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Marie, thanks on the miralax but I like mag thru the day and extra Vit C and I also take 1 AloeLax by Nature Way which is aloe vera and fennel. I keep regular this way.

The 4 the naturopath suggested are:
Inosine
Sphingolin
Flex NP (by Evergreen)
Nervagesic (standard process)

I took the first 2 for 3 months. As I've said the 5 yr of thigh burn is gone...I may get twinges now and then but nothing like I had for those yrs.

I truly believe this Fibro stuff is SO MUCH thyroid dsyfunction. Fibro isn't my big issue and I don't think it ever was, I just had a label but for years I was trying to get thyroid supported. Numbers were telling MD I was normal, not so. We are more than numbers, we are symptoms.
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Old 02-17-2016, 02:13 AM #47
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Quote:
Originally Posted by Marie33 View Post
(I have read that people that suffer with fibro may have neuropathic pain and not know it, I often wonder about that)..
I know many people with Fibro who have symptoms that seems as SFN, but none of them had the skin biopsy. The doctors usualy attribute any pain to the fibro without trying to check further, although according to some papers 1/3 of the people with fibro has SFN.
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