Peripheral Nerve Hyperexcitability (PNH) Community
ICY HOT SENSATIONS ALL OVER MY BODY
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This patient support community is for discussions relating to Peripheral Nerve Hyperexcitability (PNH) and the various conditions related to it such as neuromyotonia (NMT), cramp fasciculation syndrome (CFS), benign fasciculation syndrome (BFS), Isaacs syndrome and others.

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ICY HOT SENSATIONS ALL OVER MY BODY

Hi my name is D and I am a 39 year old female with two children who has an approximate 22 month year history of the following symptoms:

Onset of Symptoms: These symptoms lasted for about 15 months (and continue to this day)
Burning Throat, Burning Tongue, Sensitive Teeth, Right Ear Pain -
Mouth Ulcers every other month

New Set of Symptoms on the 16 month
Started having icy hot sensations on my legs than my arms than all over my body. Stocking glove sensations on my arms, hands, legs, and face. After about 4 weeks later I started having muscle twitching in my legs than my arms than all over my body along with muscle cramping in my mid section and is now everywhere in my body.  Especially in my hands and feet.  I just recently started having itching episodes where my whole body starts itching.  It is driving me crazy.

I have had an extensive work up from the cheif of neurology at John Hopkins and still have no diagnosis.  All of the test that I have had run have been normal.  I have had the following test: EEG, EMG two times, MRI of brain 2 times with and without contrast. MRI of the C-Spine without contrast. LP & Nerve Conduction Study, Skin Biopsy. Schrimer Test, Lip Biopsy. Thyroid, Diabetes, ANA, Lupus, Lymes, Vit B, Vit D. Everything normal.  I am sure I missed a few things but I think I covered the majority of them.  

I was originally diagnosed with BMS (Burning Mouth Syndrome) until all of the other things started happening to me. Then I was diagnosed by a RA doctor with Fibromyalgia. I went for a second opionion at JH Neurology department and he said that I did not have the tender points to meet the criteria for Fibro. So I began to freak out about having MS or even worse ALS. My doctor has told me that I do not have MS or ALS and that he doesn't think I have one of the BIG diseases, but he does not know what I have. He is currently treating me as if I have Sjogrens Syndrome, even though
all test indicate that I do not.  I am currently taking Lyrica 2xday at 75 mg and Plaquinil once a day.  I have been on the Lyrica for a good 7 months and the Plaquinil for 9 weeks, still no change in symptoms.

I am at a loss here, I mean I am going to one of the best hospitals in the world and I still have no answers.  Any input would be appreciated.

D
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10 Comments Post a Comment
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Avatar_n_tn
i too have all the symptonms that you described and i have had all the above tests
it is debilitating to me i try to have a cheery outlook but then i get hit with all of the above day in and day out i am on neurontin which sometimes congtrols the burning sensations
i think sometimes i  am going out of my mind plus the hot flashes from menopause
compounds more anxiety
thanks for not letting  me think i am alone
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Avatar_f_tn
I started with dry eyes back in the late 1950s, then the dry mouth, dry eyes (had tear ducts plugged..decided on my own to have it done) and pains..called it my "traveling pain"..no help offered from any doctor, even when I said I thought I had Sjogren's Syndrome.  Then I decided to just tough it out, keeping water nearby, eye drops (no preservatives..very allergic to polyvinyl alcohol). Then I noticed my burning skin sensation (from the early 1980s) had progressed to also include the sensation of wearing ankle socks, tripping and falling..and by luck I read an article on something called peripheral neuropathy.  Falling was not good in the 70+ age bracket so decided to see a neurologist.  After testing me and listening to my symptoms (and self-diagnosis) he laughed and asked me why I bothered to come in, he said I was right..and now I have esophageal dysphasia (must sit and wait for food to go down my throat, no contractions whatsoever).  All this started back in the 1950s when the Sjogren's was starting, the immune system is at fault so all the doctor's say..  I feel grand when I have to take Predisone medication for something, but I don't feel comfortable using that particular medication for longer than 10 days. So there is no cure, sorry, and try to live with it, as painful as it is seems to be the order of the day.  I have tried 7 different medications and none work that leave me mentally alert...others making me woozy, to put it mildly.  So hang in there, they are working on medications for us.
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Avatar_n_tn
I notice that all three of you have gone the MD route without success.

Try the alternative health care route.

Begin with a chiropractor.

"Great is the ignorance in the search for solace from pain.  C. Osgood."

Dave
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Avatar_f_tn
IT'S TRUE THAT I HAVE BEEN TO MANY MD'S WITH NO DIAGNOSIS OR SUCCESS WITH ANY MEDS.  HAVE YOU HAD ANY OF THE SYMPTOMS THAT I LISTED?  IF SO, DID A CHIROPRACTOR HELP YOU GET SOME KIND OF RELIEF?  I AM CURRENTLY SEEING A NATUROPATHIC DOCTOR, BUT YOU KNOW THEY DON'T TAKE ANY KIND OF INSURANCE AND IT IS QUITE EXPENSIVE. I AM GOING BROKE TRYING TO FIND RELIEF!!

D
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Avatar_f_tn
THANKS FOR THE WORDS OF ENCOURAGEMENT.  I DO HOPE THAT THEY FIND SOMETHING FOR US. WHATEVER THIS THING IS, I HOPE THEY CAN FIND ME SOME KIND OF RELIEF.  I JUST WHAT LIKE TO HAVE A DIAGNOSIS.  THAT WOULD HELP ME DEAL WITH IT A LITTLE BETTER.  EACH DAY I WONDER WHAT IS TOMMOROW GOING TO BRING.  THAT'S NOT THE WAY I WANT TO LIVE MY LIVE.  I JUST NEED SOME ANSWERS!! I HAVE TWO LITTLE GUYS AND A WONDERFUL HUSBAND WHO HAVE BEEN NEGLECTED SINCE ALL OF THIS HAS STARTED.  

I AM SORRY TO HEAR ABOUT YOUR LIFE LONG STRUGGLE WITH THE DREADED SJOGRENS SYNDROME. THAT'S WHAT HE THINKS I HAVE, BUT EVERY TEST SAYS I DON'T.  WHO KNOWS.  I WILL PRAY FOR YOU AND ME.

D
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Avatar_f_tn
Hi, Don't know if you've had any tests to rule out spirochetes as in Lyme Disease as well as Neurosyphilis.
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Avatar_f_tn
I too have had the same symptoms for nearly 2 years now.  Have had so many blood test that I thought there was no more left. That burning in hands and feet made me want to walk in front of a car. I could hardly walk on my feet, just to go food shopping was horrible.  I also had what I thought was at first pain but then realized it was muscle spasms in my hands, feet, arms and sometimes legs.  My Vitamin D level was low and my b-12 was a little low.  When I thought I would lose my mind I went to a foot doctor and she said I had peri-neuropathy, started me on Lyrica 75mg once at bedtime, rose the dose very slowly and now I take 150 mg twice a day and most of my burning has calmed down.  I also started going to a physical therapist 2xs a week to keep my muscles lose.  My hamstrings are as tight as rubber bands and he does a lot of stretching exercises that help.  I find the more stress I have then the pain and burning flares up and it becomes a bad day.  I feel alot better the I did a year ago but flare-ups happen and I just have to get thru the day. I also take a Xanax at night to sleep it also calms down the muscle spasms.  I went to a neuro he is doing a couple more blood test, who knew there were so many out there. I do have bi-lateral carpal tunnel but what came first the neuropathy or the carpal tunnel. I also get the burning on my lips and around my face. I thought I was the only one who had these crazy symptoms
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Avatar_n_tn
I have been suffering for 3 years with the exact same symptoms as all of you....burning sensations hands and feet stocking syndrom (syndrome)  muscle cramping tightning weakness fatiuge joint pain you name it I have been toughin it out while all the doctors from Rheum and endocrin and neuro all worked me up eeg emg uper n lower studies,and blood work up the wazoo w ct scans head neck abdomen skeletal survay dexa,u name it I had it and every thing came back ok,,,,,maybe it was in my mind....so after 8 months of shuffling from doctor to doc and feeling like a hypocondriac
I GAVE UP and stopped seeing doctors and lived and suffered in pain for 3 more terrible years i adapted to being misreable and never spoke about it again afraid people would think I was crazy!!!
I mean how to people understand what you are feeling when your young and healthy ...I was 32 when it started 115 lbs of solid lean muscle the fitest person around they didnt belive i felt like an 80 year old....

Then just a few months ago it got so bad I could nyt take it anymore...went to a ne rheumaytoligist and OMG!!!!!
in one visit after reviwing my test said i was sufferning def from a serous negative unidentifable autoimmune disorder......and the nerve pain i was experiencing was nerve entrapment from swollen synovial fluid...he would start treating me the same as if he had a diagnosis....
One courese of predisone started and within a week I was a new person
I AM ALIVE AGAIN
I CAN FEEL TEXTURES AND HOT AND COLD<and no muscle twitching or titning no tingling no fatiuge NO PAIN!!!!
i feel reborn and strong
currentley I am on predisone and plaquinil and it has turned my life around!!!!!!!
inflamamtion in the synovial fluid pressing on nerves inflamation (inflammation) throught the body from unidentifable autoimmune...but definatley presenting as an autoimmune SO TREAT IT as it is AUTOIMMUNE!!!!!
PREDISONE!!!!!!
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Avatar_m_tn
sir,
      I, s.p. kesharwani 30 yrs old have a tremour problem in my both hands and my head.  This problem has been starting for about 10 yrs.  There is no any specification when the above problem start,  this is slowly increase first I felt suffer to write after heavy work like run, liftup heavy materials etc. but now I cann't writting any thingh any where any in any pose like standing, sitting condition.  Now first I prepare mently n hard my body even my solder, palm and my fingers then write something.  Nowadays I work on Indian Railways as train driver.  When I joined the railway no scheduled time to go onduty, offduty,eating, sleeping, freshing etc.  Sir after that I feel it is increase at high rate.  Now I am in very problem.  I am requesting to you that please solve my problem, and give complete information about it like its causes, remeady etc.
                                                                                                                                                                 Thanking you sir
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Avatar_m_tn
Have them check you all for fungus overgrowth.  It has a potential to unleash nerve toxins.  I am having similiar problems that seem to more hit during sleep, but have recently been hitting while sitting too.  I can agree bodily stress seems to amplify it and benzodiazepines seem to slightly reduce it.
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