Another burning question

[Cindy]

Last October I had an episode of about 5 weeks duration in which I had stinging pains that lasted only seconds (all over my body), accompanied by warm or burning sensations, primarily on my back and legs. Two neuro exams, visual evoked potential and sensory evoked potentials were normal. A complete battery of blood tests were also normal. The symptoms faded away. Then in July the burning feeling returned, migrating to various parts of my body within minutes or hours. The areas affected aren't painful to touch, and it isn't a numb or "pins and needles" sensation...almost like putting "Icy Hot" or "Ben Gay" on the skin. No muscle weakness. Naturally, since the symptoms left and returned I'm worried about MS, although the neurologist last time was adamant that this didn't fit an "MS" presentation. My internist suggested it may have been due to anxiety. Since I've had these symptoms daily for 6 weeks now, should I be pursuing other tests?

[onfire]

A related discussion, ICY HOT / BEN GAY FEELING was started.

[diana]

This is the forum I've been looking for. Yes, I have the same symptom of "burning skin". It started with my lupus 10 1/2 yrs. ago, facial and arms mostly and told it wasn't a lupus "thing". Then it seemed to go dormant for about 8 years except for a "touch" here and there. Now I am awakened every day in tears with extreme burning in my shoulders and back that takes 2 hrs. to even partially relieve after taking vicodin, aspirin, and using message, heating pad and exercise like a mad woman. Then am fine, except for a "touch" now and then during the day. I've tried mattresses, pillows, different fabrics of sheets and blankets, and vibrator/messagers of all sorts, with no help. Showers do not help until later in the day. Strangely I have no problem taking naps, and must have them because I can sleep only about 4 hrs. at night. Also have problems with isolated pains; one rib has an unresolvable "tender spot" that drives me crazy when it hits, I get an earache (with no infection) on the left side that is crippling every few days, all bizarre. A neuropathy sounds logical, but something must be done about it. I'm allergic to many meds and am now trying (again) Neurontin which can knock me out. Good luck to all of us. First one to heal, call us.

[Joni]

I honestly thought I was the only one in the world with these strange sensations!!!! I have alot of burning in my nose, cheeks, lips, tops of my ears, eyelids, chin, and occasionally in my arms and legs. I describe it exactly the same--Ben Gay feeling or Vicks Vapo Rub feeling. Mine all started after a tubal ligation and alation surgeries I had done 7 months ago. No doctor has helped. This happens to me almost everyday--somewhere on my body I'm burning. Seems like mostly facial. I've been to endocnologists, gynies, neurologists, internists--you name it! No help! None of them can figure this out. I feel it's definatey related to the surgeries but the doctors say "NO WAY." If this is peripheral neuropathy, what can you do about it?? Why did 3 neurologists say this is not their field? Could it be hormonal?? I would appreciate anyones input on this. I feel so relieved knowing now I'm NOT the only one! I'm normally a happy, fun person and now for 7 months I've been really down. It is really hard living with this burning feeling all the time--it's ruining me. SUGGESTIONS ANYONE, I'm burning up and burning out!

[righnote]

Betty has given you the answer.  It's the Wintergreen.  Take a look at the label.  It has aspartame (Equal,NutraSweet)And indeed she had a toxic reaction.  Smart and unusual doctor who diagnosed her with toxicity.  

Toxic means poison and aspartame has 3 poisons--phenylalanine because it is in aspartame 'free' without the other 21 amino acids found in natural food.  40% asparic acid which caused holes in the brains of mice and 10% methanol, also 'free' without the natural antidote, ethanol, found in fruit juice.  Mark Gold at holisticmed.com gives a brilliant explanation of the methanol in aspartame.

In 1995, the FDA was forced to reveal, under the Freedom of Information Act, 92 symptoms caused by aspartame. The burning is No. 11.

I can pretty much promise you if you find the source of the aspartame, you will get well.  60 days of abstinence is a  recommendation but many feel better much sooner than this.  Depends on how much one has ingested over the years.  I just had lunch with a woman who drank diet Coke for 18 years and she is totally recovered now from depression and can now use her right hand which was misdiagnosed as carpel tunnel.    

You can check out Cheryl Gallagher on www.newviewtv.com Deadly Sweetener Part 1 (I'm on the show too with Dr. Ron Austin who says the best antidote for aspartame poisoning is purified water and time.) She had not been able to raise her right hand above her head. After 4 days off diet Coke, she could.

And please for a library of information, surf over to www.dorway.com, http://aspartamekills.com and www.presidiotex.com/aspartame.  There is a support group at ***@****

Congratulations for finding out what was the cause of your neuropothy symptoms.

***@****

[pacca1000]

I will continue to post a response every time someone complains of burning pain.  It took two years to find a diagnosis, and only after the second EMG and nerve conduction study did they find it.  Peripheral Neuropathy!!!!!!!  Don't give up.  And don't let any doctor tell you not to worry.  Worry, this is not normal!!!!  Keep after the neuros until you get an answer.  I'm sorry to be so blunt; but I lived two years in HELL and all they had to do was an EMG and nerve conduction study; which did not get done until 1 years 8 months after my symptoms started.  You are not crazy, you do not have anxiety....keep looking for your answer.

[nancy]

Add me to the list of those who experience the "icy hot" sensation.  I have had this for over 3 years.  In addition, I feel as if I'm sweating but actually am not.  For me, it's as if I dumped my head in a bucket of ice or have been outside on a cold, rainy or snowy day. It leaves me absolutely miserable for about 5 out of 7 days each week and wishing that I could just live in a different body during these times.  It has it's own unique pain sensation and one that most people can't understand. I have  other symptoms as well, such as dizziness, very jittery muscles, muscle weakness and easy fatigue, and the vibration feeling that others talk about here.  Of course all the MRI's have been normal as well as the lab work except for very low positive ANA (1:80).  The one EMG I had done was normal as well.  I do not have problems with anxiety or depression although that topic comes up as the cause as does Migraines.  I think the problem does worsen when I need to think or be busy and it may be that it relates to the dizziness.  I have begged for relief, not caring if this has a name, but to no avail.  I have tried Pamelor and Neurotin  but tend to fall asleep very easily and these meds didn't help that any. For now, I frequently use my heating pad to escape the cold (looks a bit strange on days when the temp is 85+). My sympathy to all of you who are going through this.  We must live for the day that someone figures this out and can provide some relief.

Nancy

[Betty Powell TO PEG]

Wow, I found someone that described it just like I did..felling like you have been dipped in a bucket of Icy Hot or Ben gay..I know how you feel because it happens to me too..I get it off and on lasting from days to weeks at a time. My shins burn, across my back and shoulders burn, My thighs burn and even my eyes and mouth and nose will burn like Icy Hot and when I get wet it gets worse...

I have never found a cause yet either, they tried Elavil and Anxiety drugs..nothing helped..They told me it could be paresthesias.

My health is good except for a disease I have called porphyria, but this symptom does not fit that disease..This started for me back in 96....
I was at my in laws out of town and my father in law was in the hospital and i sat in the waiting area and ate a whole bag of those big wintergreen live saver singles.....
About 8 hours later I started with the burning...They told me in the Er is was an allergie reaction or toxic reaction to injesting too much Wintergreen and to drink a lot of fluids and it would pass within 48 hours...It lasted 5 weeks then disappeared..

I never have eaten another wintergreen life saver again and lo and behold about 2 months later the feeling returned lasted about a week..then a few months later again for 6 weeks and it now comes periodically lasting for days to weeks before resolving itself again..

I wish I knew what to tell you...Just know your not alone...
Take care  Betty

[CCF Neuro[P] MD, RPS]

Dear Cindy:

Sorry to hear about your parasthesias.  I would agree with your physician as what you describe is not "classical" MS symptoms.  The normal blood tests and EMG studies would suggest that there is nothing worrisome occurring.  Temperature and pain type symptoms are difficult to see on conduction studies, as these tests look at larger nerves and temperature and pain are conducted mostly through small nerves.  But, the normal labs would rule out the common things that could cause your symptoms such as diabetes, alcohol, refusm, etc.  In addition, the widespread distribution of your symptoms do not suggest a local problem but one that is more systemic (body wide). I am not sure what to tell you.  It doesn't sound like MS, but I am unsure what is causing your symptoms.

Sorry, I am not much help.

Sincerely,

CCF Neuro MD