davecom

Hey Issie, Yeah I had the anti-nuclear antibody screen and I was negative. Of course that doesn't mean I don't have lupus, but it greatly reduces the chances, unless it is just too early in the disease for it to show up.

I now understand this sentence better (the one following the one I quoted before): "POTS can appear as a secondary manifestation of systemic autoimmune diseases such as multiple sclerosis, rheumatoid arthritis and lupus erythematosus all of which could be associated with complement deposition." Interesting then that my complement was elevated then and not reduced. I had elevated E. Coli antibodies on a blood test in December when we thought my issue was mostly gastro related. I could see my complement system going into overdrive and depositing stuff all around my body being consistent with the idea that I was fighting off a severe viral/bacterial infection last year as the doctors suggest.

Thanks for the links guys. Very helpful stuff. It probably explains why my complement system (ch50) was elevated on an earlier blood test, a couple months before the biopsy. HOWEVER, as the articles state and my doctors said - it is LOW complement readings that are usually associated with autoimmune diseases. "In general, autoimmunity is only occasionally associated with a genetic complement defect. Therefore, in active SLE, particularly with renal involvement, low CH50 and C4 titers are more often due to increased in vivo activation, which can be verified by the detection of complement activation products." So, it's too soon to jump to any conclusions I think - but I definitely think I need to see the immunologist and maybe a rheumatologist sooner rather than later.

I've tried doing some googling but haven't found a clear answer. My small fiber neuropathy biopsies are pretty clear - "strikingly" reduced autonomic nerves in the ankle, and "significant reduction" in the thigh. But then it also mentions I have these "notable" C4d and C5b-9 deposits in the blood vessels and I have no idea what that means. The pathologist writes: "The findings could point towards some type of endoneurial microvascular syndrome although the findings are hardly diagnostic of such findings being causative of POTS in this case." They go on to say the findings are nerve findings are consistent with small fiber neuropathy and POTS. So what are these deposits?

Re: Exercise I agree with you - nobody can solve it for you here and your concerns about your heart are legitimate. You need to get the okay from a cardiologist you really trust. If that means you have to see three of them, so be it. But then if they all say exercise won't damage your heart, you're right to want to try to get active again - it can't really hurt you since you can just stop whenever you want to; that's the great thing about exercise - if it's hurting you, you can just stop.

Thanks for the replies guys. It's very helpful. I used to use turmeric in cooking for years almost every day before I got sick, just because I liked the taste, yellow color, and had read about its anti-cancer properties. I've been afraid to use absolutely any spices since the terrible gastro symptoms that came with this disease, but I should probably re-introduce it!

Very interesting... hopefully the antibody will come out soon.

Good article with some scary diagnoses... thanks for posting.

Thanks Issie. After doing some reading I ordered 160 mg fat soluble benfotiamine. I'm going to hold off on the acetyl carnitine and omega 3 for now so I can evaluate the other two individually.

Okay guys... so since my appointment a month ago with my neurologist when it seemed I was improving... a lot has happened to make me think that my small fiber neuropathy has continued to progress - and perhaps at a rapid pace. I've suddenly started having burning/tingling/pins and needles in my hands and feet all the time. My gasto stuff has gotten worse again too. I want to try some supplements. I have read the studies on alpha lipoic acid and I have read here a bit on it. I have ordered some. I am quite hopeful about it based on the studies I read. What else are people taking for small fiber neuropathy? Here's what I currently take: - Magnesium Citrate and Oxide Combo 250 mg - Vitamin D (D3) 3000 IU - Vitamin C (Ester C) 1000 mg - Daily Multivitamin (One a Day Men's 50+ - actually has some pretty good stuff in it but only 2.5 mcg B12) I am considering adding Omega 3 as well as ACETYL-L-CARNITINE. I am very much looking forward to trying Alpha Lipoic Acid (I got enteric coated tablets, so as not to aggravate further my extreme POTS induced heartburn).

Yeah high B6 is a cause of neuropathy, and low B12 can be as well.

I fluctuate an incredible amount. My first walk today, I went from 68 -> 91, then later today 60->113. Standing in place while peeing I was at 147! There are so many factors that go into it. Be grateful the numbers at least are getting better. I think when it comes to the doctor's appointment you have to be VERY careful about how you present yourself. Don't come off as anxious as much as you can. I would just present the facts in as cold and deliberate a manner as you can. I know thinking about the appointment and how to present yourself in its own can cause anxiety... but I would really try to be very calm in presentation and just say matter of factly your symptoms and that you have repeatedly seen your heart rate go to 110-120 just from standing, but other times it doesn't. You probably waited a while to get to this appointment. Don't let him dismiss you, but don't be too aggressive - I've found doctors don't like that. You need to clearly express you're not well, while not seeming irrationally upset...

Hi Issie, Thanks for the resources. I've actually read about pernicious anemia before and somewhat about B12. I went through my old blood test records and found my level was 487 back in December and 700 in March (normal 200-1100), so on the surface seems like this is not related to my small fiber neuropathy issue. However, I've read that these tests can be false normals... Given that they are normal though I'm not sure it's at the top of mind for me - I guess the loading test would be a next step if I wanted to explore it further.

Alex, I'm so glad you got this approval and I'm really hoping IVIG will help. Best wishes. Keep us posted.

I've seen these supplements with extreme oral dosages - like 25000 mcg. Even 1000 mcg is so high above the "100%" USDA need... is it safe? I am interested in maybe adding B12 supplementation to my regimen, since my multivitamin has like 2.5 mcg...

Yeah. I lived in the UK for a couple years when I was younger though. Great country, and great folks.

Maybe it was just a good moment today, but technically you didn't meet the 30 beat threshold for POTS... and those blood pressure numbers are good! You've really improved since you first posted a couple months ago.

I was afraid too of heart failure when I first got sick last year and my LVEF was a little on the low side across two echos (and I have some congenital heart conditions so I was doubly worried). 6 months later, another two echos showed it back to being well within the normal range, so the doctors theorize it was a virally induced reduction (perhaps even the virus that caused my sfn and therefore my POTS according to their theory...). In my case I was told to be assured that even with the heart, numbers just below the normal range are not something to be worried about, even though I was deathly worried myself - and rather something to be monitored to see if the trend is generally downward. Obviously I would share your concerns with your doctor - but according to the highly controversial Levine article, lowered stroke volume, etc is consistent with POTS and can be improved through exercise: http://hyper.ahajournals.org/content/58/2/167.full Hope this helps.

Since at least September of last year (about a year now). SFN was diagnosed by QSART and Skin Biopsy.

I emailed the company and they sent a nice reply about it. Unfortunately they are only expecting to hit the market for sarcoidosis induced neuropathy in 2015.

I'm not sure if ARA 290 has come up before, but there have been several studies the last few years and its safety profile looks particularly exciting, even if its actual efficacy is only mildly exciting: http://www.ncbi.nlm.nih.gov/pubmed/23168581 http://www.clevelandclinicmeded.com/live/courses/2012/WASOG12/post-syllabus/SaturdayOct6/1445%20BRINES.pdf http://www.hindawi.com/journals/prt/2012/256024/ Company developing the drug's site: http://araimpharma.com/ara-290/ The goal of this drug is not just to reduce pain, but to actually help small fiber nerves regenerate apparently (although some of these articles are conflicting on that). Can anyone find a study actually showing improvement in nerve fiber density? I saw that referenced in one of the studies... Anyway, it's good to know there are people out there researching this stuff; and I think I saw that ARA 290 was approved for orphan drug status in sarcoidosis induced small fiber neuropathy. So... if your POTS/dysautonomia is caused by sarcoidosis, you maybe in luck!

Zap, According to your signature you have small fiber neuropathy? Then you probably already know the cause of your POTS and probably a lot of your other symptoms therefore. The question is, what caused your small fiber neuropathy. I'm in the same boat ? -> Small Fiber Neuropathy -> POTS and other symptoms I'm trying to fill in the question mark. The SCN9A gene is just part of the search. Keep searching!

I've tried midodrine, atenolol, and clonidine. They all did lower my heart rate but not enough to be worth the side effects. So I'm not on anything for the heart rate, and just a bit of supplements, famotidine/carafate for the gasto issues from the disease. I know now that my underlying condition is small fiber neuropathy, so while I'm trying to improve the heart rates through walking 100+ minutes a day and the aforementioned exercise - my research/disease goal is now focused on the sfn (although it may apparently get better on its own the doctor says... we'll see).

Amen, Andy. Great work mate. That's really impressive that in just 3 1/2 weeks you have seen such an improvement. I've been at it for 3 1/2 months ha... but I was going 60s/70s to 140s and now I'm down to 60s/70s to 110s/120s (when I first stand, goes down with walking) so I have seen some improvement too... just not as much as you. Of course I'm not quite able to get up to what you're doing. I'm at 35 minutes on a recumbant bike 4-5/days a week and leg strengthening the other 2 - getting the heart rate up to 160 on the bike, but it's only that high for about 10 minutes of the 35. It's mostly in the 100-140 range for the rest. Perhaps I will see more improvement as I get further along. Anyway, really impressed by what you've done, Andy. Keep it up.

70 would be normal for a person with a resting heart rate of 60-70, so don't think of it as "slow"... think of it as "normal" It really is that blood circulates around your body more when you walk. Your heart rate response in some types of POTS is perfectly normal (the tachycardia) that is... blood is pooling in other parts of your body and your heart is racing to compensate pumping the lesser amount to your brain so you don't faint. If your heart didn't race when you stood (if your blood is pooling somewhere else) then you would faint... which would probably be worse than a racing heart. Of course there are people with types of POTS where the heart rate response is completely abnormal. If your heart rate goes down when you walk, you may NOT be one of them. It maybe a helpful clue. Journal articles on POTS cover this, so I suggest looking it up if you're interested.