intermittent neuropathy
 

I haven't been diagnosed formally with neuropathy, primarily because the symptoms (primarily burning in my feet) isn't 24/7 -- it's on and off but sure is annoying when on. If it gets worse the neurologist will run tests, but I've read that with respect to small fiber neuropathy (large fiber was ruled out by 2 neurologists) that nerve conduction studies don't reveal anything (but a skin biopsy would).

I'm just wondering whether people who have been formally diagnosed with neuropathy suffer from it 24/7 or on-and-off.

Thanks for any replies.

Atticus

Hi Atticus, I'm sorry you have this dx. For me, and I have large fiber/axonal though, it's 24/7. What kind of symptoms do you have? If it's off and on, that may be good sign that something you're doing is activating it. You may be able to figure that out. Scan the board, use the search function and you'll likely get some ideas to try, like activities/diet/supplements etc. You might also consider a 2nd or 3rd opinion, doctors vary quite a bit in experience and motivation to help folks with this disease. Good luck!

Lerch, thank you for your reply. Pretty much burning in my feet is the most annoying symptom. Especially when at work with my shoes and socks on. I find being home without them on most comfortable. I haven't been diagnosed, not yet at least -- but one neurologist didn't rule it out.


I've also seen an endocrinologist and he couldn't see anything metabolic.

It didn't get better (not much at least) with abstinence so I'm thinking it may be not be alcohol related but the neurologist said drinking wouldn't help even it isn't related.

I do vape quite a bit and I'm certain nicotine doesn't help. Probably drink too much coffee. Not sure what affect that has, since I drink coffee mostly in the morning but in the afternoon is when symptoms most bother me. I tried vitamin supplements (all the major ones, benfotiamine, ALA, B-12, zinc magnesium, etc.), and I'll be cutting those back (my doctor thinks I'm taking too many supplements, which can affect other stuff). Anxiety about it makes is worse for sure, and I think that's an issue.

I'm truly at a loss, and fortunately it's just an annoyance. It doesn't affect my ability to walk or do anything but it's terribly distracting.

I'll read others experiences. For now, I'll reduce my host of vitamins (a good multivitamin with B vitamins and D3), reduce my caffeine, and try to quit vaping.

I'm not diagnosed by a neurologist, although I do have a 24/7 burning feeling in my feet when I wear my shoes & socks, it's really distracting and not that easy to cope with at all for me. Luckily I get relief from this when I dont wear anything on my feet, as if it's not there.

Before the 'neuropathy?' on my feet I already suffered from abnormal foot pain at the sole of my feet when standing/walking which has been progressively getting worse and maybe the neuropathy stems from this, I sure as hell don't know.

I'm checking in with yet another physical therapist who goes like 'lol never seen this before dafuq is this'... great

Honestly I have no idea which doctor is suited the best for my/these kind of problems

YoungNuero,

Sounds like we have a lot in common. I am most comfortable at home without my shoes and socks. The first neurologist examined me for 10 minutes or less and said it's not neuropathy. That he doesn't know what it is. I saw a second (more patient one) and he didn't rule out SFN, and I will be seeing him again, and have some tests done.

How old are you by the way? Do you know what caused it? What self-care measures are you taking (vitamins, etc)?

I'm 41, and hope this doesn't stay with me forever, but it's been 6 months.

It hasn't gotten worse, but hasn't gotten better. Kinda the same. Not as annoying during the winter months (maybe the weather is a factor).

Thanks or the reply.

I haven't seen any neurologists yet only physical therapists. Had an EMG which showed nothing wrong with my feet and a back MRI which also showed nothing, after that they sent me on my way to go to a physical therapist for exercices which i haven't done yet.

Now I checked in with a new physical therepist because I am mostly suffering from the pain I get by standing up. None have said what I could possibly have. Im only 22. I tried a wide range of supplements but none seem to have helped. Now Im getting a feet scan and see what they can do for me.

Atticus

Have you been checked for diabetes, or impaired glucose tolerance? For some people, even a mild problem in this area can lead to pn, particularly the burning sensation/small fiber type. You might want to read up on that and even try a glucose monitor, to see how your body reacts. Of course, your primary care Dr can test you as well.

Hi Atticus,

I have intermittent PN symptoms (tingling/burning/numbness in my feet and sometimes in my hands and mouth; also some motor symptoms in the past). My symptoms are usually pretty mild and they come and go, though I generally have something every day. The afternoons tend be worse. I've had these symptoms for at least 9 months at this point off and on. My neurologist hasn't formally diagnosed neuropathy, though I had an EMG/NCV test done last October which had mildly abnormal results (some distal latency in my sensory nerves). I'm also on the younger side for neuropathic symptoms (32 year old male).

In my case I've had subclinical hypothyroidism since at least 2012 (high TSH and normal T3/T4), and I think this could be the cause of my nerve problems (definitely don't know this for sure though... My nerve problems are still technically ideopathic). I've been taking synthroid for about 6 months now to try to level out my thyroid and have slowly seen some improvement in my symptoms. I've had a few +/- symptom free days in the last few weeks along with some flares.

I do think supplements can help with nerve symptoms. Lipoic acid in particular seems to help me.

Lerch,

I have been checked for diabetes. My glucose hovers at or around 90 (give or take) and my A1C is 5.4 (less than 5.7 is normal). The neurologist ruled out diabetes. My internist will run Thyroid again next time but thyroid has been ruled out. It's not diabetic in nature.

I'm pretty certain it's secondary to alcoholism (my past heavy drinking).

After a 6 week binge over the summer amounting to two liters of vodka a week I noticed these symptoms of burning (and prior to that I drank plenty too).

My neurologist said it could be that, could be idiopathic, but best not to drink if I even think it may be related.

Lonestar,

I had my thyroid tested back in June; all results for TSH and T4 were normal. I'm 41 (a bit older than you obviously) but all my bloodwork looks good. I even went to an endocrinologist and he couldn't find anything blood-related. I've been tested for everything so he found no need to test for anything more.

I take benfotiamine and Alpha Lipoic Acid too.

Isn't it amazing how good it feels when you're feet AREN'T burning? It's true freedom. And then in the afternoon (just like you) it flares up on and off for hours and it's all I can think about. And at work, I can't even take off my shoes/socks or raise my feet.

Stress and worrying about also exacerbates it.

I think the next time I see my neurologist he will run some tests. I believe in my case a skin biopsy will either confirm or rule out small fiber neuropathy. Large fiber neuropathy has already been ruled out.

Wishing you the best.

AF

Hey Atticus,

I can definitely relate to the stress component of this, and I think most folks on this forum can too. Even though my nerve symptoms have (thankfully!) always been pretty mild compared to most of the PN stories I've encountered (i.e. they've never really interfered with my daily life beyond being an annoyance), the uncertainty as to the cause of my symptoms and the possibility of my neuropathy getting much worse has been a big point of concern for me.

For me, time, lots of research, and some improvement after starting thyroid treatment have really helped to ease my stress about my nerves. Like you mentioned above, stress definitely exacerbates my symptoms too, so things tend to compound in either direction - stress leads to more symptoms, which leads to more stress, and vice-versa.

It sounds like you're doing everything you can to diagnose/treat your PN and that you've largely ruled out the standard metabolic stuff including thyroid.

One question though: do you have the actual TSH/T3/T4 numbers from your blood test?

The only reason I ask is that "normal" TSH is a bit of medical gray area. I recall reading a study that suggested anything over about 2.5 pg/mL is higher than ~90% of the population. Many doctors won't consider treating thyroid disorders until either T3/T4 is off or TSH is consistently over 10 pg/mL. If you're on the high end of the normal range (TSH>3.0 pg/mL), thyroid could still be a factor. For reference, my TSH was typically around 6-8 pg/mL for years. Until my nerves started going haywire, I was basically asymptomatic, and to this day I have had no other symptoms consistent with thyroid problems except slightly elevated (though still "normal") cholesterol (i.e. normal weight, not lethargic, no hair falling out etc.).

Good luck going forward.

L

Lonestar,

My TSH was under 2 and T4 was in the mid-range as well. Endocrinologist doesn't believe it is metabolic as I've had a pretty comprehensive workup prior to even getting any symptoms back in September. My internist said he will run thyroid again next I see him. I don't know what T3 is (or that there was one). I have to look into that so that for the heads up.

I've done my research on this stuff too, but it does seem like there are so many variables, degrees of severity (as well as all-day-every-day v. intermittent). age, gender, weight, co-morbid issues. With what mine might be (I'll know for sure one way or the other in May when I see my neurologist), all I can do at this point is accept it for what it is, as annoying as it is.


Best Wishes,
AF