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View Full Version : Position change causes cold sensation on thighs--anyone else?



Nancy T
01-16-2012, 01:33 AM
For the last few months, I've occasionally been getting a distinct cold sensation on the outside of my thighs shortly after a position change--usually going from standing to sitting, sometimes when I straighten up after bending over.

The "cold draft" sensation starts a few seconds after the position change and lasts for a couple of minutes, maybe.

It started with just one thigh or the other (the outside) ... now it's both thighs at the same time.

Anyone have something similar?

I have scoliosis (33-38 degree curve) and NO back pain, but more and more trouble walking. I can go a couple of blocks and then have to stand in place (or sit) and rest a bit til I can continue--slowly.

I really think my spinal cord/nerves are being affected by the scoliosis but the scoliosis specialist I saw in 2006 and 2009 said it was not the cause of my symptoms. Lots of other weird nerve symptoms (e.g., I push on the top of my left big toe and I get a big electric shock in two places on my left arm).

Anyone??

Nancy T.

rohrer01
01-16-2012, 10:35 AM
Welcome, Nancy.

I have similar issues with my left arm. I have had left radiculopathy since I was a teenager, with no known cause. I have two thoracic curves. The top curve is very high and tight and is currently in the upper 40's. Every once in a while I get what's called a tactile hallucination on my left hand. It feels cold and wet. I have to actually check it to make sure that it's really dry. Fortunately, this doesn't happen very often anymore. I don't know what causes it, as I've had MRI's and EMG's and nothing has shown up that can explain the nerve pain or the weird sensations.

Your sensations seem more consistent than mine. I'm guessing that your curves are lumbar. Maybe the scoliosis itself isn't what's causing this to happen as the curves aren't overly huge (although I've read that there is not much correlation between curve magnitude and pain). Have you had an MRI or nerve conduction studies (EMG)? That may give you more information. Also, why is it that you can't walk far if you say you aren't in any pain. Is it weakness? How old are you? It could be degenerative changes. I'm just guessing.

I would suggest going to a good neurosurgeon or neurologist and having a workup done on your lumbar spine. Maybe you'll get your answers. Sorry I couldn't be of much more help. Best wishes trying to find some answers, as I know how these things can be very disturbing.

livingtwisted
01-16-2012, 02:04 PM
I have a similar, but opposite issue. Lately my left shin has felt hot, like someone just put a space heater right in front of me, but the skin isn't hot to the touch. It started off just occasionally, maybe once a day at most, and then got to the point where it was happening several times a day, usually when I changed position, and most often laying down or sitting. Finally I decided to try stretching, just laying on my back, stretching my hips and hamstrings. After that the hot sensation went away for a full week before coming back. Maybe it was just a coincidence, I don't know.

Nancy T
01-16-2012, 02:18 PM
Hello, Rohrer, and thanks much for the reply. Interesting to know there's someone else who has these strange sensory symptoms with nothing seen on MRI to account for them.

Sorry, I should have provided more info. I am 54 and I have thoracic and lumbar curves (adolescent idiopathic, but I have no idea what my curves were to start with, as I have no old records and did not see a doctor about the scoliosis between ages 14 and 49). The scoliosis specialist (orthopedist) I saw in 2006 did order, besides x-rays, a lumbar and cervical MRI (the latter because I have Lhermitte's, weird sensory symptoms in my lower body when I bend my head down, but nothing to account for it). He said that nothing on the scans could account for any of my symptoms.

In 2009 I had another x-ray when a physiatrist was trying to figure out my walking trouble. He didn't say anything about the x-ray (he was really only interested in trying to pin a fibro diagnosis on me because of overall arm-and-leg muscle achiness, and he might have been right), but later a nurse told me on the phone that I had moderate degenerative changes in the lumbar spine. But I have no herniations or pinched nerves, apparently. My GP and the physiatrist both attributed my walking trouble to an unspecified "muscle imbalance" due to the scoliosis. The PT I saw seemed to think rather it was a case of the nerves needing space opened up around them. I did her exercises a few weeks but fell off the wagon and never got back to them regularly. They did not help, but maybe I just didn't do them long enough.

My walking trouble is not pain--I honestly have no back or hip pain, which the docs can't seem to get through their heads--it's STRAIN in my legs, most especially the side hip muscles, when I walk continuously for a block or two. I stop and stand still for half a minute, then I can continue again slowly. The faster I walk, the faster it happens. It is not weakness in the sense of collapsing--I can remain standing, nothing gives way under me--but the hip muscles feel EXTREMELY strained, like they're pushing really hard against a brick wall. Claudication is ruled out.

I have also seen neurologists over the years (for several problems, including dizziness, paresthesias, and other odd symptoms) and I told them about this walking problem, but they didn't seem concerned. I had an EMG and nerve conduction test (I think just on one leg) and this was normal.

Of course it doesn't help that I'm 50-60 lbs overweight and now, being unable to walk for exercise like I used to or even use the stationary bike for more than a minute at a time, I am out of shape. But this walking problem STARTED many years ago when I WAS in good shape, walking two miles fast and easily several times a week and at the same weight I am now. So it's not JUST a matter of being overweight and out of shape.

Honestly, I gave up on the doctors after many years of trying. They are concerned if you're in pain, but if you have other problems that aren't life-threatening and aren't easy to figure out, and don't show up on any scan or test, they give up on the second appointment, or the third at most. They are just not interested. I just use walking sticks if I have to walk more than a couple blocks at a time, and take it very slow.

The cold sensations and other paresthesias are not bothersome--just WEIRD. As you know. :)

Thanks again for the reply! :)

Nancy

Nancy T
01-16-2012, 02:22 PM
Hi livingtwisted, thanks for the reply. Stretching... that is what I should be doing. :) Glad you found relief from the hot sensation. (I used to get that one on the left side of my nose--go figure--not from scoliosis, I'm sure!) Probably not a coincidence that it went away when you did the stretching.

Sorry to see you've had such a progression in your curve. I know I have been lucky.

Thanks again,

Nancy

rohrer01
01-16-2012, 02:48 PM
Nancy,
It seems that it's been awhile since you've seen a scoli specialist. I would suggest going back there again. Sometimes they order a CT/Myelogram as it shows WAY more than an MRI. However, it exposes you to a lot of radiation and you get a spinal tap and dye injection for the myelogram part, so not fun at all. I guess it's just how bothersome this is for you as to how aggressive you want to find answers. You have to remember that the medical field is limited and there is a LOT that they don't know about the human body. So, in that light, it may be that it's not a lack of concern but a lack of knowing what to do.

I have started developing nodules on my skull and nobody seems to know what it is and I've felt brushed off. The last doctor I showed it to said, "I'm not brushing you off. I just don't know what it is or where to send you." This particular problem is one that I'm going to be aggressive about, as I sometimes get headaches that surround these nodules and they appear to be bone. So I'm seeing a headache "specialist" (she's a nurst practitioner) who tried to get me to go to dermatology for them. I clearly told her that they aren't in my skin. But I think I'll insist on a brain MRI with contrast, as I've never had one with contrast before. Then at least we can see what the nodules look like on scan and see if they are growing inward as well as outward.

I'm only telling you this, as you have to pick your battles. A cold sensation is probably something you can live with. The muscles freezing up on your legs, on the other hand, you may have to get more aggressive with finding a diagnosis for. It may be nerve impingement that is not seen on the MRI or it could be something totally different. Unfortunately, we have to be our own advocates, as medicine has spread out into so many different specialties, that each doc only knows what his specialty is and can't treat the whole body. Maybe you can do some online research on your muscle symptoms. It may point you in the direction of seeing the right specialist.

But again, I would recommend seeing the scoli doc again because of the degenerative changes. I hope this helps.

Nancy T
01-17-2012, 02:02 AM
Rohrer: I had never heard of CT/myelogram--sounds interesting but a bit nasty. I did have an attempted spinal tap under fluoroscopy to help rule out MS, but they were unable to withdraw any spinal fluid in the five or more times they punctured the canal, presumably because of the scoliosis. It sounds like with a myelogram they are injecting rather than withdrawing fluid.

Yes, it's so true that there is a lot they don't know about the human body and what causes certain symptoms. My frustration with the doctors has been not that they don't know, but that some of them ended up painting me as a hypochondriac, implying that nothing was wrong, and not trying to give me any kind of closure or guidance on what to do next. I am talking mainly about GPs and neurologists here. The orthopedist I saw (spine specialist) didn't take the "hypochondriac" path; he just didn't have anything to say about my problems except that they weren't due to the scoliosis (which was really the only question I expected him to answer, and he did).

The nodules on your skull sound really weird. Do you have any idea at all what might be causing them? Perhaps the doctor you saw didn't consider that he/she was brushing you off, but at some point, it seems like SOME doctor ought to go to bat for a patient with such an unusual problem and do some research, ask some colleagues. It's OK for doctors to say "I don't know what's wrong," but it's not OK for them to use that as an excuse to give up on you too easily. The unspoken corollary to "I don't know what's wrong" is too often "and I don't intend to try to find out."

I completely agree about picking your battles. The cold sensation isn't one I'm going to fight. In fact I'm done fighting them, as long as I can keep working and no one cares how messy my life and house get. :) I have found that "being my own advocate," while good advice in principle, often leads to doctors looking at me like a hypochondriac. This is no doubt partly because I've had "too many" symptoms and complaints over the last 12 years (a sudden, permanent, severe hearing loss in my left ear, paresthesias, coordination problems, dizziness and strange brainstem symptoms and test results, Lhermitte's, etc.). Too many complaints over too long a time marks you, in their eyes, as someone they don't even want to listen to. If there is just one issue (like scoliosis), it's different.

It's not just me and how I approach doctors; a lot of people with undiagnosed symptoms similar to mine find the same frustration when trying to advocate for themselves. You get a "reputation" as a pushy, difficult, annoying patient if you keep asking questions or try to correct doctors' wrong information or assumptions--and then they won't even listen to you. And then you reach the point where you have to protect yourself psychologically by not risking yet another lecture about how nothing's wrong when you KNOW there is, yet another easy assumption by yet another doctor that nothing is going to be found, that this or that abnormal test is meaningless, etc. I know I'm too sensitive, and maybe I've also simply had very bad luck with the doctors I chose or was referred to (most of whom were nice but not really interested). But my mental health, which had been fine all my life til then, was for several years devastated by the whole thing, and even now when I've learned not to let those responses devastate me, I still hate wasting my time and mental resources (and insurance money) on investigations that always seem to end up useless, or worse.

Sorry to vent, it just comes out sometimes!

As far as seeing the scoliosis doctor again, he clearly felt it was not necessary. After my original visit in 2006 he said I could get another x-ray in a year or two and then in the third year to make sure it wasn't progressing. I waited til 2009 for the second visit, and since he felt it hadn't progressed (3 degrees, but that was within the margin of error), I did not need to come back.

I really don't know about my muscle symptoms... I certainly have done some online research, but I just don't know what all the possibilities are. A neurologist I saw early on, when the walking trouble started and I also described trouble with muscle stamina overall (chewing, singing, holding my arms in one position for any length of time, etc.) of his own accord ordered a myasthenia gravis blood test, but that was negative and I don't have the main signs of that disease. I keep wondering if it's perhaps some metabolic thing or vitamin/mineral deficiency or what... but I just cannot get any doctor interested in going the distance to figure it out. X-ray, check; a few blood tests, check; MRI, check; send her to PT, check; I'm done! (No, I haven't been bitter against doctors all my life... only the last few years, and I think with good reason. First neuro basically told me I had MS with no real explanation, scaring the pudding out of me, then later he retracted it with no explanation and began telling me I was a hypochondriac for continuing to ask about it! Things like that mess up a person's psyche.)

Lordy, I write too much; sorry. I really do appreciate your ideas and information. AND I wish you success in finding out about the nodules (as well as your scoliosis issues). Please post back or PM me when and if you find out!

Best wishes,
Nancy