Dog walker
Wow… I don’t think I have ever heard someone with as similar symptoms to me…
- The tripping problems actually showed up on an EMG after my freshman year of college but then within a period of months a follow up EMG was normal (bizarre right?).
- I had burning feet for a while which disappeared and now has been occurring in the mornings.
- My vision often gets large black spots in it when I stand and I get a warm/fuzzy feeling in my head and have to sit again.
- Also I had about three months of nonstop sunburn type pain on one side of my body (very sensitive to clothing).
- I also have the water sensations (sporadic but only when I am hot).
- I also had been talking now about pain in the cold office I work in now – my fingers will turn purple and I will run them under warm water just to warm them up – also the stinging pain and “bugs” crawling all over my legs (also when cold).
- I am on beta blockers for constant tachycardia and have had some problems with what the doctors suspect is SVT (not sure if this is neuropathy related by my heart is structurally fine)
- VISUAL MIGRAINE AURAS – This one in particular I haven’t heard too many people talk about and my eye doctor and neuro were a little confused. What do yours look like and does anything in particular bring them on? Did your neuro have thoughts on the cause here?

I am only 22 so I am going to say your doctor was wrong about that! So you had symptoms from teens on and it took 40 years for real pain to hit? It really amazes me how much progression varies by person.

Also one more interesting thing - my younger brother (19) just found out he has an extra bone in each foot and the doc asked about CMT in our family - but as far as I know there is not history here

Oh Dogwalker - one more thing - did they find what was causing your SFN and was your defined as length dependent or not? (mine has been dubbed non-length dependent)?

Was the doctor referring to Charcot's Foot? That is not Charcot-Marie-Tooth Syndrome (CMT). I have CMT.

Not sure because I wasn't at the appointment but he also asked about family history with neuro problems (not sure if that helps answer you question). I was told he asked about CMT but my mom could have easily misheard

I think the best way I can say it is that my symptoms are significantly better than they were a year ago at this time. I rarely get shooting pains any longer, and only get the burning sensation when I flare. I still have a LOT of weird sensations and am by no means normal, but I'm not in horrible discomfort any longer. (knock on wood)

Please note that I do have Impaired Glucose Tolerance, though, and it's possible that my low carb diet has also helped me. Knowing what I believe to true now, I was likely doing daily damage at a cellular level with my "healthy" whole grain diet. My blood sugar spikes high with even minimal grain consumption.

I was treated with plasmapherisis and IVIG. I don't have symptoms listed for the potassium channel other than the elevated VGKC test. My neuropathy is in my lower legs (distal) So basically, the VGKC antibody is present, but no explanation as to why, there has been no relation with that and my neuropathy to date.
My dx's from various Dr's has been "cidp" "atypical cidp" and "acquired inflammatory neuropathy". Almost as good as "idiopathic", except the cidp did qualify me for the ivig and plasmapherisis.

Hi.
1. I don't know if the cold is effecting you but for me sitting in certain type chairs trigger my neuropathy. I have had all the symptoms you list.
2. My feet burn in the morning. Shoes do not bother me but they do bother many of the people with neuropathy and I have read it listed as a symptom.
3.Yup. I get this stabbing pain in random places including behind the knee.
4. Sounds like neuropathy to me. (I have small fiber neuropathy)

So got my results back - no genetic mutation or abnormality present for the Nav1.7 gene.
Dog walker - if you see this I would still love a reply to a question a few responses up thanks!

Hi Dog walker, have you been tested for POTS and NMH ?
It can cause the symptoms you describe when standing.
Have you tried measuring blood pressure while standng ?
Beta blockers can lower the blood pressure and cause such symptoms.

Sorry for the delayed response--I've been away the last couple days. My SFN was diagnosed by my neurologist from my history, symptoms, and negative EMG/NCS. As a result of high levels of antibodies that are "diagnostic" of lupus, she referred me to a rheumatologist. The rheumy says that she can't say I don't have lupus, but doesn't want to say that I do because the PN is my only symptom--I don't have the joint or skin symptoms that are more typical of lupus. She has had me on a mild lupus drug (plaquenil) for over a year but my symptoms have only gotten worse. So now it's back to the neurologist for more testing, including a skin punch biopsy.

Regarding the ocular migraines, I saw a variety of transparent geometric patterns superimposed on whatever I was looking at. I would see them mainly when first opening my eyes in the morning. That lasted less than a year, but my 2 kids (and my mom) have them too. They see bubbles or neon zig-zag lines. My daughter also has the full blown migraine headaches.

My visual symptom when standing up was that everything would go black, then a little horizontal slit of vision would open up then gradually expand.

I'll get back to you in a few weeks if I get a more specific label for the SFN.