Looking for some opinions
 

So I recently started a new job and since then I have been having more problems and I am wondering if they are neuropathy related or not (or if others have had similar symptoms).

1. The office is cold and I am not sure if this i the cause but when I am sitting at my desk for a period of time one of two things will happen - either I will get a crawling sometimes almost vibrating sensation in my legs that is constantly moving (like in little zaps but not painful just vibrating or crawling) or I will get stinging (almost like the hairs under the skin on my legs are needles trying to get through the surface) - the latter is usually more intermittent.

2. I often wake up in the morning and my feet burn and then usually it worsens when I put my shoes on but eventually dissipates at the office (is it possible heat is causing it?).

3. Today I was in a meeting and I got this very distinct stabbing feeling behind my left knee. It would happen like every 20-30 seconds for about 10 minutes and then stopped all together.

My symptoms have always been sporadic so I never know if they are neuropathy related or just some other occurrence - opinions would be greatly appreciated.

Sounds familiar
 

The symptoms sound like Neuropathy, two or three quick-fire questions. Are you diabetic? Are you post Chemotherapy? Did you make a living up to your elbows in cleaning solvents, paint strippers, toxins? These are just a few of the usual suspects. Good Luck, Ken in Texas.

I can add a comment on this problem...

I am EXTREMELY sensitive to being cold since developing neuropathy. My symptoms become more pronounced and more widespread. I get these "rushes" in localized areas of my body that are similar to that "chill up and down your spine" feeling.

I do everything I can to stay warm, and my symptoms are better in the warm months than cold. I live in a very hot area of the country now that it's summer, and I ridiculously carry sweaters or jackets anywhere where I might have to spend a prolonged amount of time in cold air conditioning. I learned that after doing everything I could to not shiver in the dentist's chair. :eek:

The answer to all of these is no. I should have mentioned that I was diagnosed with non-length dependent SFN this past winter (based on an abnormal SGNFD in the thigh and abnormal QSART testing). I am also about a week away from getting results for one of the sodium channel mutations.

I get very cold too but I also think I may actually have bad circulation because my fingers will turn purple sometimes in the office. Have you ever had problems triggered by drinking a cold drink? (when i am in the office and cold already and drink from the water coolers - which are chilled- this often causes the stinging pain). I also sometimes have problems with the heat - except this causes a sensation of water running down my legs. I just never know what things are symptoms because they are such a mish mash of reactions.

No, can't say I've had that problem. But pronounced chills I get when I'm cold I also get when I get "the chills" from hearing something exciting or scary. Whatever the response mechanism to that is what's triggered by being cold.

Now this is interesting because if I am surprised or caught off guard I sometimes have the same stinging pain that I get when I am cold except sometimes it covers more of the body. I had never heard anyone else to have this!

Also I am wondering if anyone can think of a reason that the burning in my feet is only in the morning (when most people say burning is worse in the evenings)?

mine burn in the morning and then sometimes at night . what meds are everyone using . I have tried so many

it seems your PN is brought on by cold, almost everyones pn, is usually constant throughout the day, usually gets worst at night because of low temperature or high temperature.

I tried a few a couple years ago but the side effects weren't worth it and because my pain doesn't seem to be constant I decided to stop trying at the time to find something that worked (I had tried gabapentin and cymbalta). Gabapentin made me dizzy and "fuzzy" all the time and cymbalta made me almost like a zombie to the world and lose all appetite.

Yes my symptoms almost always seem triggered - cold and heat cause different symptoms. I did have a period of a couple months where I had almost on stop sunburn feeling on one side where my clothes hit. The only thing that is constant is tacchycardia which the docs think may be an autonomic problem - i have had some success with beta blockers to keep this in check.

Also as a general question - I haven't had the burning feet problem in a while and it seems to be worse the morning after exercise (but before I moved I exercised and had no burning). Why do you think my symptoms seem to come and go so much more than most people? I did just move to texas so I suppose the heat could be part of it but I wish I knew why things come and go so much.

Change is the constant
 

Weakness of muscle is the constant for me. All other symptoms have evolved over time. Burning, stinging,zapping,deep pain have all changed, stopped, come back, moved around, etc. I had burning feet for six months or so and now it is not a problem.P.S. You and the other poster that get chills from external stimuli such as ghost stories or startling surprizes sounds almost like a reaction to adrenaline. I don't have that but I get the notion. Good Luck, Ken in Texas.

Hi boiler1993,

I am sorry you are experiencing so many symptoms.

You have mentioned the possibility of a sodium channel mutation.
Sodium channel mutations, channelopathies in general, can present in seemingly "odd" ways. I hope the test result on this, either way results turn out, help you to find more relief.

I, too, am going through testing for sodium channelopathies.

I hope you are more comfortable soon.

:grouphug:
DejaVu

Ken - Yeah the adrenaline type reaction also makes me wonder what the trigger there is. Like if I do an activity with sprints or short term high exertion when I stop movement I often have a rush of stinging from head to toe...not sure what causes this but could be temperature or adrenaline. Good to know I am not the only one with fluctuating symptoms.

DejaVu – I feel very fortunate because I know that my symptoms do not compare to many people’s on this forum but answers would still be nice as I am only 22 (symptoms started at 19). Good to hear the sodium channel testing might give answers but I also was only tested for 1/3 so we will see. Did you get tested for one or several? I should have the results this week so can post what the results are when I know.

One last thing – I have experienced deep almost like bone pain in one leg a few times. No idea what is causing it but that one is very painful and makes it hard to sleep – could this be neuropathy related or something else?


Thank you guys for all your responses :)

what can be done if it is sodium channel problem?

Healthgirl -
What I have been told is that there are more targeted medications for these channelopathies and also it fairly new research so I would suspect that more focus on medications for these mutations may come in the future.

Boiler1993 and Healthgirl,

I have been told the same.
There are limitations to treating at this time.
This research is picking up.

Yet, it may be helpful to know. If there is a channelopathy, there may be some options to try. If there is not a channelopathy, it may be time to look for something else. :winky:

I am now awaiting DNA testing for confirmation of the type of neuromuscular disorder, also a sodium channelopathy, which is in addition to the PN diagnosis of sensorimotor axonal polyneuropathy.

Boiler, I hope you don't have any of the channelopathies. However, if you do, knowing this will likely give you and your doctors some guidance in what to watch for systemically, any co-occurring conditions, etc.

To Our Health,
:grouphug:

DejaVu

I think variability is pretty much the norm with PN. My symptoms started with burning feet, which lasted a year then went away for 7 years. Then started up again, followed by a series of paresthesias. One would start and be prominent for weeks or months, then become sporadic as a different unpleasant sensation would become prominent for a while. I don't think there is any typical or predictable progression with this.

I've been having leg pains for over a year; they begin after I get in bed, and feel like butcher knives stabbing deep into my legs. The location is variable, in one or both legs, sometimes in one place, sometimes moving all around. (Before I started using medical marijuana, I would be unable to sleep, and worthless the next day.) Now my bloodwork shows actual muscle damage and I hope to find out how that is happening after some upcoming neurologic testing.

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.

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.