deja vu - do you know which channel you are being tested for with the sodium channelopathy?

dog walker - during those 7 years did you have different symptoms besides the burning feet or were you symptom free? yeah the pain in my leg has happened a few times this summer it is almost like growing pains except SO much worse I just never thought small fiber neuropathy would cause a symptoms that wasnt skin level. But I guess your experience sounds similar so I will assume it it from that

It was extreme cramping that led to my channel testing. I was positive for the voltage gated potassium channel. Im not sure if what you are describing as growing pains is the same--mine were like intense charley horse pain, usually at night. Not sure if it relates to ionic testing, but the vgkc antibody was picked up in a paraneoplastic panel testing.
then the positive potassium channel led to a pet scan and other testing to rule out cancers.

Hi boiler1993,

My DNA testing covers an extensive panel of neuromuscular channelopathies.

I've also needed to have repeated paraneoplastic panels, which are, thus far, negative. I am sure we will repeat these yet again at some point. Negatives can be false negatives.
http://www.mayoclinic.org/diseases-c...n/con-20028459

Take care,
Dejavu

I was curious to what targeted medications were available for these.

Northerngirl
 

Northerngal, I did not see this post of yours when I had written. My apologies.
It must have been a bit unsettling to have anything come back positive on the paraneoplastic panel. Mine is negative thus far. I have had it repeated 3 times so far. There can be a window of time when there are symptoms and this panel is negative, later turning positive. (Sometimes up to 3 years.)

I, too, had excruciating whole-body cramping of muscles and stiffness. At it's worst, I could not use my hands to hold onto anything, they were too spastic. I could not hold an eating utensil to simply feed myself. :eek: I'd had a lot of difficulty breathing, etc. I could not even re-position my pillows. It was horrible, very incapacitating. Having had the flu and complications, I then had a few weeks where this was very severe. The effects can be systemic. I was taken to the ER by ambulance, repeatedly. Nobody could tell me if I would recover or if that was my new baseline. A very rapid and severe exacerbation of an underlying, previously undiagnosed, disorder.

I cope with this daily now: yet, to a lesser degree. It is easily exacerbated, however.

Take care, Northerngal.:hug:
DejaVu

glad to hear the panel has been negative for you. My pains were short and were alleviated by flexing my feet or changing positions, plus were limited to my lower legs. Nothing like I hear of people suffering from here :( I feel very bad for those suffering with the extreme pain and that there is no way to stop.
All of the tests for cancer were negative, so there has been no explanation thus far as to why I have the antibody.
I hope you find some answers and the tests remain negative for you .As you probably already know, sometimes the neuropathy symptoms can show up before any signs of cancer if it is a paraneoplastic condition. Although it involves a lot of tests it was a peace of mind to rule out the various cancers.

northerngal - to be honest I hadn't asked because I figured I would wait to see if the results were positive first - like I said I should have those this week (or next if the doc office is like it usually is...) and if the conversation with my doc comes to that I will let you know

Treatment Target is Specific Ion Channel
 

Northerngal,

My apologies, as I had referred to you as "northerngirl" in a couple of spots.
Thank you for your response.

Yes, I am aware there can be a lag time between symptoms showing up and antibodies showing up in the paraneoplastic panel. From what I have read this lag time can be up to 3 years. (I had mentioned this in my earlier post.)

You have not been offered potential treatments for the potassium channel issue? I don't think the options are the same for sodium channelopathies and potassium channelopathies.

I think treatments in potassium channelopathies would need to target the potassium channel? ( I could be wrong. )

http://qjmed.oxfordjournals.org/content/93/12/787

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1112934/


Boiler and Northerngal,

For sodium channelopathy, I have been offered: Tegretol, Depakote or Mexiletine. I can tolerate one of these. I was already on it for another condition, so we simply increased it. These are not perfected treatments, by the way. I find it helps, a little. I am still easily exacerbated.
I do think everyone has a somewhat different experience. This is simply one person's experience with using these meds.

Warmly,
DejaVu

Janieg, do you have relief with the lipoic acid, flaxseed, etc. diet? Or just no progression?

My leg pains happened on a regular basis right from the beginning, so hopefully yours is just a passing thing. I have high levels of lupus antibodies, so my leg pains presumably result from some kind of autoimmune attack.

The only major issue I had during the years between burning feet episodes, was developing Chronic Regional Pain Syndrome after a thumb surgery. That lasted 9 months.

I've had sensory/autonomic/circulatory issues since I was a teenager. I had periods of blacking out when I stood up, restless leg syndrome, sensations of water drops hitting the back of my legs, mild pains all over the left side of my body, heat and cold intolerance, Raynaud's phenomenon, and visual migraine auras. These all would be present for a number of months, then spontaneously go away. All through my 30s I had pretty severe heart rhythm irregularities and was on beta blockers for many years. They all seem related now, and if so, it was a very slow progression. I was fortunate not to have significant pain until my mid-50's.

Boiler, I looked back through your older posts and found another couple similarities in our symptoms. I also have high arches, and went through a period of tripping, bumping into doorways, and dropping things. My primary doctor at the time said that it was due to pre-menopausal hormone fluctuations.