JenniferInOhio Posted October 23, 2014 Report Share Posted October 23, 2014 For the past 3 months, I've had this warming sensation in my lower front leg/ankle area. It feels like I dipped my leg into a very warm bath, and then it goes away. It only last for a few seconds, but comes back on and off throughout the day. Some days I feel it many times, other days not so much. It doesn't hurt at all just feels very warm - but not to the touch. It actually started in my right foot in August, but now it's more in my lower leg/ankle area. Sometimes I'll feel a warming sensation on my other leg, but 9/10 it's on my right. On two occasions I felt a warm sensation in my right forearm, but that hasn't happened in over a month. Does anyone else have a similar story? What could this be? I mentioned it to my POTS Dr. and he was perplexed. He said if it got worse that I would need to see a neuro. I'm 40 and my aunt had MS. He mentioned that in passing.Thanks for any ideas. Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted October 23, 2014 Report Share Posted October 23, 2014 IMHO...cuz you're asking...you should check w a neuro. Yes it's just one little symptom but it's an unprovoked sensory experience in strange places. I've had general autonomic related heating, but it was followed up w tachycardia; ie sympathetic activation. And if you have MS in the family, I think it'll ease your mind to talk to a Neuro. I say this from experience (and from my own perspective). I've had symptoms that overlapped MS, so had yearly MRIs for a while, and another baseline two ys ago after not having had one for a while. (So far, pretty normal so Neuro says Sjogren's). Another possibility-fwiw-my sister had a slow onset of sensory symptoms in her limbs that worsened over time into severe weakness. She waited. Turns out that her cervical spine was squishing the nerves and by that point, causing damage. She had surgery to get a steel rod (went very smoothly) but had a long recovery to normal because she'd waited. This isn't meant to scare you because it may be nothing but I'm personally an advocate of being on the front end of problems, if possible! Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted October 23, 2014 Author Report Share Posted October 23, 2014 IMHO...cuz you're asking...you should check w a neuro. Yes it's just one little symptom but it's an unprovoked sensory experience in strange places. I've had general autonomic related heating, but it was followed up w tachycardia; ie sympathetic activation. And if you have MS in the family, I think it'll ease your mind to talk to a Neuro. I say this from experience (and from my own perspective). I've had symptoms that overlapped MS, so had yearly MRIs for a while, and another baseline two ys ago after not having had one for a while. (So far, pretty normal so Neuro says Sjogren's). Another possibility-fwiw-my sister had a slow onset of sensory symptoms in her limbs that worsened over time into severe weakness. She waited. Turns out that her cervical spine was squishing the nerves and by that point, causing damage. She had surgery to get a steel rod (went very smoothly) but had a long recovery to normal because she'd waited. This isn't meant to scare you because it may be nothing but I'm personally an advocate of being on the front end of problems, if possible!This is interesting in that I do have a herniated disk in my back (lumbar region) and a suspected disk problem in my neck - it hurts to turn it too much and is sore - has been for several months. I thought cervical affected arms though and lumbar affected legs. Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 23, 2014 Report Share Posted October 23, 2014 I get a burning sensation from the top of my feet, through the calves, and into my thighs. Often it does include both forearms, and most recently my abdomen. It can get particularly uncomfortable. Burning is not a good word for it, but it is the best way I could describe it. For me it would be closer to dipping these sections into hot water.I have attributed it to my SFN, but that is my guess. It has been suggested as a possible cause. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted October 24, 2014 Author Report Share Posted October 24, 2014 I get a burning sensation from the top of my feet, through the calves, and into my thighs. Often it does include both forearms, and most recently my abdomen. It can get particularly uncomfortable. Burning is not a good word for it, but it is the best way I could describe it. For me it would be closer to dipping these sections into hot water.I have attributed it to my SFN, but that is my guess. It has been suggested as a possible cause.Yes - dipping into hot water! What is SFN? Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted October 24, 2014 Report Share Posted October 24, 2014 I have had issues with burning spots on the surface of my lower legs. Then I have had a feeling of cold water flowing just under the skin on my arms. I haven't been able come up with a trigger, and the different doctors I have seen seem to chalk it up to Dysautonomia. I am seeing a new neurologist next week and will see what she says. I have a list for her. Quote Link to comment Share on other sites More sharing options...
lejones1 Posted October 24, 2014 Report Share Posted October 24, 2014 SFN stands for small fiber neuropathy. One type of SFN is autonomic neuropathy, which about 50% of POTS patients have. Some portion of these also have sensory neuropathy, which causes abnormal sensations like tingling, numbness, feelings of hot and cold, etc. It typical starts in the feet/lower legs and hands/lower arms. I have sensory SFN and while I've never had the specific feeling you describe, I've heard it can occur and there are definitely a lot of bizarre sensations that it causes.Obviously you need to see a neurologist and he'll probably want to check for a variety of things, but make sure he considers this, especially if he's not aware that there is a connection because SFN and POTS. A local neuro told me it pretty much only occurred in people with diabetes and AIDS (which is actually completely false) and that my symptom pattern wasn't consistent with it, but my POTS specialist tested me for it and sure enough I have it! I think the usual tests are QSART and little skin biopsies. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted October 25, 2014 Author Report Share Posted October 25, 2014 SFN stands for small fiber neuropathy. One type of SFN is autonomic neuropathy, which about 50% of POTS patients have. Some portion of these also have sensory neuropathy, which causes abnormal sensations like tingling, numbness, feelings of hot and cold, etc. It typical starts in the feet/lower legs and hands/lower arms. I have sensory SFN and while I've never had the specific feeling you describe, I've heard it can occur and there are definitely a lot of bizarre sensations that it causes.Obviously you need to see a neurologist and he'll probably want to check for a variety of things, but make sure he considers this, especially if he's not aware that there is a connection because SFN and POTS. A local neuro told me it pretty much only occurred in people with diabetes and AIDS (which is actually completely false) and that my symptom pattern wasn't consistent with it, but my POTS specialist tested me for it and sure enough I have it! I think the usual tests are QSART and little skin biopsies.Thank you. I'm calling my POTS dr next week to ask for a referral to a neuro. I'm suspecting some type of sensory thing, my herniated disks in neck/back, or possibly thyroid - just because of some other weird things happening. Quote Link to comment Share on other sites More sharing options...
MomWithPots Posted October 25, 2014 Report Share Posted October 25, 2014 I have has this before! It usually occurs on my thigh and is hard to explain. Just one small area would get very warm for no reason..my mom also had MS...another wierd symptom! My body never fails to surprise me anymore!Let me know if you find any answers Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 25, 2014 Report Share Posted October 25, 2014 Definitely ask about small fiber neuropathy. I have it and get sensations like you're describing. Quote Link to comment Share on other sites More sharing options...
Nymph Posted October 27, 2014 Report Share Posted October 27, 2014 I just read about this. Yes, it is a kind of neuropathy. There is a specific name for it when it occurs on the thigh. Both my dad and I have that. He's a neurologist and says it's no big deal - the one on the thigh, anyway. If you have it in other parts of your legs I would get it checked out. For me, it has started at the same time as other neuropathic-type things are happening, so I need to remember to bring it up as one piece of the puzzle. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted October 27, 2014 Author Report Share Posted October 27, 2014 Definitely ask about small fiber neuropathy. I have it and get sensations like you're describing.I just read about this. Yes, it is a kind of neuropathy. There is a specific name for it when it occurs on the thigh. Both my dad and I have that. He's a neurologist and says it's no big deal - the one on the thigh, anyway. If you have it in other parts of your legs I would get it checked out. For me, it has started at the same time as other neuropathic-type things are happening, so I need to remember to bring it up as one piece of the puzzle.How often do you feel these sensations? On a daily basis? Several times per day? Putting in a call to my POTS Dr. today... Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 29, 2014 Report Share Posted October 29, 2014 The burning sensation started in my feet years ago and happens nightly. It has since progressed to my hands and I get sensations of burning or wetness on other body parts which come and go and move. SFN and POTS often go together which is why it's good to be evaluated for SFN. Quote Link to comment Share on other sites More sharing options...
Nymph Posted October 31, 2014 Report Share Posted October 31, 2014 I have only gotten the warming on my thigh a few times. "Neuralgia paresthetica" says my dad. He can feel his all the time. Quote Link to comment Share on other sites More sharing options...
gjensen Posted November 1, 2014 Report Share Posted November 1, 2014 Mine is present most of the time. I can overlook it much of the time. It can get especially uncomfortable in the evenings. Periodically, it can be especially difficult to tolerate. It is often at it's worst at night, or after some activity. Like all of my symptoms, it waxes and wanes. At it's worst, I could liken it to a sunburn that was getting rubbed with sandpaper. At it's best, like a mild sunburn. Quote Link to comment Share on other sites More sharing options...
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