ramakentesh Posted June 8, 2012 Report Share Posted June 8, 2012 This may be of interest. Small fiber neuropathy and many idiopathic neuropathies have traditionally been thought to be mediated by an autoimmune process. But some research suggests that perhaps they are the result of cytokine inflammation similar to Rheumatoid Arthritis and other inflammatory disorders - inflammation of the nerves in this case. With the possibility of viable treatments:http://www.ncbi.nlm.nih.gov/pubmed/20513817http://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=2&sqi=2&ved=0CGgQFjAB&url=http%3A%2F%2Fildcare.nl%2FDownloads%2Fartseninfo%2FHoitsma%2520et%2520al.%2520Infliximab%2520in%2520SFN%25202006%2520Sar%2520Vasc%2520Diffuse%2520Lung%2520Dis%25202006.pdf&ei=XKrRT6GGFYrdmAXyz4H9Ag&usg=AFQjCNGz4iRGulirmR4WXhoxhnUyqT8wjQ&sig2=AUKgd-148BhHrly5KNUykQhttp://www.springerlink.com/content/d4147313131mqg4t/This may be of interest in those with neuropathic POTS or those that have other autonomic neuropathies. Basically cytokine mediated inflammation could actually be treated with TNF alpha inhibiting medications. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted June 8, 2012 Report Share Posted June 8, 2012 Sounds similar to shingles Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 8, 2012 Author Report Share Posted June 8, 2012 Its interesting that about 33% of POTSies have small fiber neuropathy involving sensory symptoms, while others only effecting autonomic control. Yet only a much smaller group test positive for ACHr receptor autoantibodies and many POTSies have elevated inflammatory markers like C Reactive protein. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 8, 2012 Author Report Share Posted June 8, 2012 COuld also explain why a lack of activity may make some feel worse? Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 8, 2012 Report Share Posted June 8, 2012 Very interesting. Thanks for the articles. They'll be going with me to the docs. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 8, 2012 Report Share Posted June 8, 2012 Since we're on this subject, has anyone had their TNF alpha and IL-2 levels evaluated? Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted June 8, 2012 Report Share Posted June 8, 2012 I tested negative for AChR antibodies but was diagnosed with a sensory neuropathy. Very interesting!!! Never had my TNF alpha or IL-2 levels checked....Good articles! Quote Link to comment Share on other sites More sharing options...
issie Posted June 8, 2012 Report Share Posted June 8, 2012 Good articles. Explains the connections I think. Since my dad has AS and also severe neuropathies (that seem to be a genetically inherited problem) and also has Gallium Barre - the connections seem to be there. His neuropathies have definitely progressed to the large fibers and he has no feeling in his legs - up to above his thighs and in his arms above his elbows. He is nearly incapacitated by this and has a whole lot of pain with it - despite having numbness. I think possibly some genetic components are at play here - because his father had the same issues and unfortunately - I seem to be following in their footsteps. The second article listed above talks about sarcoidosis and I have genetic markers for that and I also have some type of small tumors all over me (like lipomas or granulomas) both in organs and some that can be felt just under the skin and most have enlarged. They have never been biopsied to see if its sarcoidosis - so don't know. I'm right now having a tumor check going on to see how the internal ones on organs are. Doc. wants me to see specialist in regards to one on liver (it's been there for a few years.) And they found something on one kidney and lots in thyroid (one bioposied because they thought it might be cancer - thank goodness, wasnt. My dad also had thyroid cancer. Oh, all these lovely genetics. NOT! So, more testing to follow. Sigh! I hate this part of the answer trail - the testing part. Waiting for more test results.http://en.wikipedia.org/wiki/SarcoidosisInteresting find Rama and maybe can give us another part of the puzzle to take a look at.Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 8, 2012 Report Share Posted June 8, 2012 I was tested for Sarcoidosis, but not small fiber neuropathy...Negative on the Sarcoidosis. Issie, I mentioned Sarcoidosis on a previous post to you to see if you had been tested. Glad that you are testing for that. Sorry about your family history, mines not good either Quote Link to comment Share on other sites More sharing options...
issie Posted June 8, 2012 Report Share Posted June 8, 2012 I was tested for Sarcoidosis, but not small fiber neuropathy...Negative on the Sarcoidosis. Issie, I mentioned Sarcoidosis on a previous post to you to see if you had been tested. Glad that you are testing for that. Sorry about your family history, mines not good either Thanks Kim. I guess, I don't remember that . . .but, thank you. I think it's definitly worth looking into. Yeah, with the new genetic testing I recently did - I'm finding out a whole lot of things. Some things I wish I didn't know . . .just have to hope that the possiblities don't happen. Just because you have the genes for something - doesn't mean something will trigger it in you and it will be a problem for you. But, I'm getting some definite answers and I'm so excited about what I'm learning.Issie Quote Link to comment Share on other sites More sharing options...
MattT Posted June 9, 2012 Report Share Posted June 9, 2012 Thank you for posting this. This is new information to me, and posts like this give me hope as well as ideas for moving forward Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 9, 2012 Report Share Posted June 9, 2012 Thanks for the post Rama!Glad you are getting answers Issie. It was a post when you were mentioning the growths that they were finding in various organs, but I can't remember which one. It's been months ago now! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 12, 2012 Report Share Posted June 12, 2012 Interesting - I will be bringing this to the attention of my neurologist. Though it should be the other way around... Quote Link to comment Share on other sites More sharing options...
issie Posted June 27, 2012 Report Share Posted June 27, 2012 I recently asked my doc. for testing on cytokines. I remembered something being here and couldn't find it recently - asking some questions because of some positive markers on autoimmune disorders. I did a search on google and found this thread again.Maybe something we should take a look at.Issie Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 27, 2012 Report Share Posted June 27, 2012 I asked my immunologist about testing TNF alpha and he said the test is not an accurate reflection of what's going on. He was in a hurry that day so I couldn't get a more complete explanation. I think I'll ask again another time. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 4, 2012 Author Report Share Posted July 4, 2012 I asked my immunologist about testing TNF alpha and he said the test is not an accurate reflection of what's going on. He was in a hurry that day so I couldn't get a more complete explanation. I think I'll ask again another time.unfortunately your doctor is right. Plasma levels of cytokines dont actually show whats going on at local levels - in ank spond and other crohns TNF alpha levels can be normal in blood, but elevated at the site specific target, meaning a biospy would be the only way to go. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 4, 2012 Author Report Share Posted July 4, 2012 Lo and behold - cytokines regulate gene transcription - perhaps including NET!!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 5, 2012 Report Share Posted July 5, 2012 Thanks for the explanation. I can drop it and not question my doc about it. Quote Link to comment Share on other sites More sharing options...
issie Posted July 5, 2012 Report Share Posted July 5, 2012 I'm not giving up in having my cytokines tested. I still want to know. If something shows up - it may be more parts of the puzzle. There may be a lot of false negatives ----but, there probably wont be any false positives. Issie Quote Link to comment Share on other sites More sharing options...
Guest mattgreen Posted September 20, 2012 Report Share Posted September 20, 2012 Its interesting that about 33% of POTSies have small fiber neuropathy involving sensory symptoms, while others only effecting autonomic control. Yet only a much smaller group test positive for ACHr receptor autoantibodies and many POTSies have elevated inflammatory markers like C Reactive protein.Would low/normal serum CRP rule out cytokine inflammation? Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted September 20, 2012 Report Share Posted September 20, 2012 This is all so very interesting to me. I have an elevated TNF at 15X upper level or normal which was drawn during my MCAS workup. There are a few of us that have had TNF drawn by our various mast cell specialists or immunolgists who are pretty versed in mast cell disorders. I also have autonomic neuropathy of both my CV and sudomotor systems, and this is a pretty decent and convincing angle for me to link the two disorders, as most of the MCAS patients out there have POTS. Not sure if any of you saw this, but as I have been trying to link the massive inflammation back to my current issues, I ran across this link on GMO (genetically modified foods ) in the US food supply. It is a pretty compelling movie, and horrifying to see what we are eating here. http://articles.mercola.com/sites/articles/archive/2012/09/15/genetic-roulette-gmo-documentary.aspxThanks for sharing, Rama.Lyn Quote Link to comment Share on other sites More sharing options...
issie Posted September 20, 2012 Report Share Posted September 20, 2012 I found this interesting:http://en.wikipedia.org/wiki/Cytokine_stormIssie Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted September 20, 2012 Report Share Posted September 20, 2012 So the real question is-- What is causing all this inflammation? Quote Link to comment Share on other sites More sharing options...
comfortzone Posted September 21, 2012 Report Share Posted September 21, 2012 Obesity according to some.... Quote Link to comment Share on other sites More sharing options...
bellgirl Posted September 21, 2012 Report Share Posted September 21, 2012 NOT at 105# it's not...lol Quote Link to comment Share on other sites More sharing options...
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