I know that a lot of us have tingeling in various appendages, but has anyone had tingling in their entire body, including your head?
Two weeks ago I had back surgery to to relieve the pain and numbness in my right leg. Unfortunately it didn't work, guess I better not trade in my cane.
Oh yeah, one more question, how many of you wear flannel shirts or sweaters in 90 degree temps. Thyroid checks out normal and have had every blood test I can think of. This just isn't normal. I guess the next stop is a neurologist.
Hi Epson :)
I've never had all over tingling all at the same time. Sometimes I get a sort of buzzing and wonder if my phone's on 'vibrate' - but not all over. I used to feel the old really badly but I've done a total switch around - and now it's the heat that bothers me.
A neurologist sounds like the way to go. :(
Take care - Scottie :)
No! You poor thing. Hang in there and I hope you get it resolved!!! Carol
Hi Epson,
I'm like Scottie, tingling here and there but not all over at the same time. I have had some mild tremors and sometimes my body feels like I am trembling on the inside. I also have found that sometimes my body's thermostat doesn't work right, hot and cold. The heat and humidity really get to me. Not a good thing when a person lives in Florida.
A neuro sounds like a good idea. I hope you get some answers soon. Real sorry to hear your back surgery wasn't successful. I bet you were hoping to get rid of that cane. I hate my cane but am sure glad it's there when I need it. Good luck to you.
quiger
I go thru spells when I am freezing and teeth chattering when it is so very hot, but then I will have a week or two when I am constantly in a sweat. It doesn't seem to matter what the weather is. And no, I have never buzzed all over at the same time. A neurologist seems like a great suggestion. Keep me posted. I would like to know what he says. Good luck!!
I always run hot.Even now in winter im just wearing shirts. In summer its unbearable. i feel like im going to explode. Not good when you live in Australia.
However, when i do get cold. i get cold right through to the bones and the only thing i can do to warm up is have a hot shower and pile clothes on to keep the heat in. I think my thermostat is a bit dodgy. I always need to artificially regulate my body temp.
As for the tingles i never get them all over but have just recently gone thorugh a stage where i'd periodically get a tingling sensation run through the right side of my head.
Hope you find an answer
Pud
I go the other way. This past week I am aways hot and it is cold outside. I have the fan going. When I take my temp it is low. 95F to 96F. yet at the same time I feel like I am burning up. Especially on both legs below my knees. Never had it like this before. LOL. I should be getting used to that "this is new" thing.
Denise
Epson, I think a neurologist is the way to go. Also, have you had the test for Hashimotos to check the thyroid antibodies. The thyroid can do such a job on our body. I have just recently figured out that the quivering that I do inside is not always from anxiety but from my Hashimotos.
It sounds like you need a good neuro workup. Sorry to hear that your surgery didn't work. Heck of a note. Irish ;D
Irish,
I have had my thyroid checked, rechecked double checked and an ultrasound test as well. Nothing ever comes up, so, you know how doctors are, if nothing shows up on the tests, it's all in your head ???.
It's hard to believe that doctors don't seem to have any intellectual curiosity.
Epson I have had neuropathy for about ten years now (gee time flies as they say but not necessarily having fun). I have seen a neuro for about the past six or seven years. He basically tries to treat the unbearable pain and monitors the tingles for possible balance issues. Tonight my feet were burning and my back and fingers were firing off. Then again the humidity is high and it is raining. Always seems to anti up the symptoms. Yes I have been tested for thyroid, and vitamin B deficiency. All came back normal. There are times when I am burning up and times no matter what the temp around me I am freezing cold and nothing seems to relieve the problem. My thermostat has been busted for years. I first started noticing problems about fifteen years ago and thought it was the mid-life hot flashes. Now I am not sure what came first - the chicken or the egg syndrome.
It is important to be evaluated by a neuro and to see if there is an underlining cause to your pn that can be treated. Diabetes can also cause pn. If you are like me and there are no treatable causes underneath it all, it is still important to try measures that may slow the progress of neuropathy so that full function and balance can be maintained. As far as the tingles and freezing goes that seems for me moments in time I just grit my teeth and bare with it. Hopefully the next day things will get better.
I wish you much luck. Check out the National Neuropathy Association website and see if there is a support group near you. They offer lots of good information. My local chapter has speakers at every meeting to help inform and answer questions. Hopefully you will get the answers you are seeking.
Epson,
I too have been dealing w/the "tingling"/buzzing sensations. They aren't constant but when I get them its for a week or two at a time & ALL over--randomly jumping anywhere between from the top of my head to my toes. I have had moderate tremors (head to toe) since dx & my neuro' has tried 3 different meds' unsuccessfully, to stabilize them. The tremors are so bad that my whole body shakes & my bed vibrates when I lay in it :-\ Cold intolerance is also an issue, as I have Reynaud's, but I find myself wearing a fleece in air conditioned places & even during the summer. For the longest time I've been referred to as "cold blooded" since I've -always- been cold when no one else is :D
I'm sure that all of this has something to do w/PN as so many have already testified, but my neuro' is very 'old school' & not very knowledgable about SjS beyond "dry eyes & mouth", so I don't have much hope there. Maybe take a look at the thread by Dr. Birnbaum of Johns Hopkins? He's very insightful & perhaps can point you in the right direction. I think it was on the Nervous System forum, I know I'll be heading the way of his clinic as soon as I can manage!
Good luck & let us know if you find out anything! :)
I usually have to take a nap in the afternoon and whenever I do I get the moments of trembling but it keeps freaking me out since I'm in California and I keep thinking we're having an earthquake.
On the temperture thing.....I can' even remembe what it feels like to be cold. I'm hot all the time and even sweating from my face as I type this.
Steve
My father in-law has the leg pain and the tingling. They did an MRI on his spine. The diagnosis was Scoliosis of the spine. This is where the spinal cord gets constricted and pressure builds up causing the leg pain and the tingling. His legs give out on him sometimes. Unfortunately he was told that he was too old for the operation. So the best they can do for him is Corteszone shots in the spine. Very painfull. Your Thyroid may be OK. It could be that your pituitary Gland or your Hyperthymus is out of whack. Think of your Thyroid as a furnace your Hyperthymus as a thermostat and your pituitary as a thermomater. If any one of those three are not working correctly then you will be cold in this case. Talk to your doctor and see if you may need to have more blood tests.
Seeker
Sjogrens causes the autonomic system to go whacky so a person can be hot or cold. I am usually hot although I will occasionally get cold. Sometimes I switch back and forth so it is on with the long sleeved shirt-off with the long sleeved shirt--and then where did I leave the long sleeved shirt. You get the picture. Irish ;D