altered skin sensations

I posted a while ago about altered sensations in calves.  Thought it was strain but some changes since then.  I now have mild burning and altered skin sensations in my shins and outer calf area bilaterally.  This feeling has spread to my outer lower thighs above knees.  I have also felt it in my arms bilaterally - bicep/tricep area and lower outer forearm.  Feel mild tingling occasionally in upper back (this could be stress) and occasional change in sensation near jawline.  My skin also feels hyersensitive with mild burning, lingering feeling when touched.  Worse on right but present bilaterally. I notice this more when I sit.  No other symptoms. No weakness, fatigue, loss of reflexes or loss of sensation (temp, light touch, pricks), no numbness, no heat sensitivity.  I remain very active with no impairment. No problems sleeping, walking, running, etc. Just this odd mild burning skin sensation.  It does not seem to be worsening, just spreading. This does not seem to coincide with conditions I've researched.  Any suggestions?  Could this be MS?  Could this be b12 deficiency or hypothyroidism? I can't believe anxiety could do this because I do not feel overly anxious at this time.  Had blood work in Dec 04.  TSH .51, potassium 3.0, MCV 96 and glucose 81.  Everything else normal too.  No other tests.  I started taking b12 a few days ago. Just neuro exam by PCP. Should I schedule appointment with neurologist?  What should I have checked or be concerned about?

Any suggestions would be appreciated.  Thank you for the input.

[CCF-Neuro-M.D.-PW]

With purely sensory symptoms that have spread over time as you describe it is inlikely to be MS

You should seek a neurologist opinion about a cause for a sensory neuropathy. Some test that can be done are a careful look for diabetes or pre-diabetes, a paraneoplastic syndrome, amyloid, or HIV (if you have risk factors). Your potassium is a bit low so this may need to be looked into. A cannot be more specific so you should follow up with a neurologist

[spenjo]

By the way, my hands and feet have not been affected by this.

[spenjo]

I am a 42 year old otherwise healthy female.

[evansmom]

I am also concerned about altered skin sensations mainly in my face, bilaterally. It is like a burning with underlying sinus pressure.  I am scheduled to see an ENT soon as I have suffered from sinus problems on and off my entire life.  I have been treated for stress-related anxiety on and off for the last seven years.  I will have long periods where I am anxiety free with no meds but stressful situations will bring it out.  Recently, my mother fell and broke her hip and once again I began experiencing anxiety.  I also have rheumatoid arthritis (20 yrs), hypothyroidism (8 or 9) and vitiligo (39) - all autoimmune diseases.  My B12 was checked and is normal.  I too worry about MS - but have no weakness or fatigue or other symptoms by the way I am forty-two and fairly active.  The heat, which has been wicked this summer in Upstate New York has not bothered me at all. And my face feels better when I am in the shower or if I put warm water on a washcloth.  Occasionally I will feel a tightness in both of my shins exactly at the same time in the same place and I will feel a body twitch when I am at rest but with no other signs of weakness or muscle wasting. A recent eye exam showed no evidence fo ON but I also have chronically dry eyes.  A CT scan ordered by a doctor filling in for my PCP was negative.  My PCP, however was not sure why it was ordered but felt I was not exhibiting enought symptoms to be seen by a neurologist.  Truthfully, with all the info on the net I have been reading, only served to scare me to death and raise my anxiety level.  When I am not paying attention, these symptoms seem to disappear.  One final note my doctor and rheumatologist also feel that I exhibit symptoms of chronic hyperventilation.

I have tried unsuccessfully to post a question to the doctor, any advice?

[SherryDenice]

Let us know what the ENT says.  I have never mentioned it to my ENT and have been wondering if I should because I also suffer from sinus problems.

But, my arms and legs burn too.  I HATE THIS!  It's hard to focus!

I was able to post on this board about a year ago JUST BY LUCK!  You just have to pop in at the right time.

Good luck and let us know what the ENT says.

When are you scheduled to see him/her?

Sherry

[honky]

Hi - read you post with interest.  I am having similar symptoms but mainly in legs and arms - a little in face.  I also have terrible joint pains and aches and feel generally unwell.  I notice you have also been diagnosed with RA.  My only diagnosis so far is peripheral neuropathy and its hellishly painful but I feel there is still some underlying cause that has yet to be found.  Did your burning sensations begin with the RA?  I have read that autoimmune system diseases can sometimes overlap one another and you get a bit of everything!  Any comments would be appreciated.  I live in London and although we are not a third world country I have thought of coming to the States to see if you are a little more advanced in treating PN.  Love Pauline

[evansmom]

Thanks for the responses!  I have an appointment with the ENT on 9/7 can't wait it took forever to get an appointment.  I originally complained of a dull pain in my right cheekbone and some facial sensations.  A doctor filling in for my PCP checked me out for 10 minutes including basic neurological tests in office and sent me for a CT scan to r/o a brain tumor or stroke.  I was a little surprised.  When I returned two days later for facial tingling a different doctor said they had no idea what it was and although she doubted it, she wanted me to have an MRI to r/o MS - now I was totally freaked out.  Two of my very good friends are doctors and they were both surprised as well.  I made the mistake of randomly searching the internet which made me feel worse.  They did their best to reassure me.  

The RA did not present with burning and I have not experienced burning of my extremities.  My disease has been moderate at times with a few flares when I was in my 20's.  It was in remission for a while when I was pregnant seven years ago.  I am currently in between meds and I am trying to find something without horrifying side effects.  My doctor is well known in the field and I have a lot of faith in his advice. I have all the hallmarks of RA.  Around the same time I began experiencing these facial sensations, my thyroid started acting up.  The dosage of my meds was changed twice in three months.  I am also being treated for anxiety and I am feeling better.  The hyperventilation thing is very interesting and I definitely think it is part of the equation.  Every MS message I read about that includes these sensory symptoms also have complaints about balance, vision, fatigue - etc.  

[joeybubbles]

Hi all,
How interesting to read your posts, since i have similar symptoms.  I am a 44 y/o female with an unremarkable medical history.  I have low cholesterol and low bloodpressure.  I've been getting cold sores on my lips since my 20's and have taken acyclovir since then as needed.  This past year they have increased in intensity and frequency. In November I woke up and had a high pitched ringing in both ears.  It is constant and has not gone away for even one minute.  In February I had an episode of vertigo that lasted for about 12 hours.  I frequently get kind of a motion sickness feeling at times since then.  I've had one other episode of vertigo but it only lasted about 1/2 hour.  Since June I've been having a burning sensation on the skin of my arms, upper legs and face.  It's been pretty constant but some days it hurts worse than others.  If I rub it, it really hurts, like a sunburn, and the air conditioning blowing on it hurts. For years I've had this same burning sensation in my left hip area that would last a few days and then go away.  Before the burning started I went to an ENT and neurologist at the clevelland cinic.  My thyroid studies or normal, basic bloodwork and glucose normal, MRI of the brain normal, neuro exam normal, hearing normal.  My vitamin b12 level was 311. (lower end of normal) and an immune panel was normal.  I was put on valtrex daily to see if that would help, which it hasn't made any difference except I haven't had any cold sores.  I do have an appointment with another neurologist at the end of september.  I am not an anxious person at all, but if there is something I can do to keep this from getting worse, I want to do it.  I did read somewhere that nutrasweet can cause similar symptoms, so I've cut down but haven't eliminated it completely.  (dont know if i'm just grabbing at straws)  

I'd love to hear any test results or opinions any of your doctors give you and I will do the same.

Sorry this is so long.

[joeybubbles]

You mentioned that your potassium was 3.0.  I work in a hospital and in our lab that is considered low and will be treated right away.  Are you on potassium or other meds that might be lowering yours?

[SherryDenice]

JoeyBubbles:

The one thing that strikes me is that you mention you have had coldsores for years.  Coldsores are considered in the family of herpes. Herpes viruses cause burning.  Have the drs. mentioned this to you?

I am no dr. or in health care but, I have been reading about my burning for 3 years now and that is one of the things that I have read.

Your burning does not cause you to be anxious?  I am extremely anxious over mine.  It is very debiliating at times actually!  Give me your secrets please!  :-)

Sherry

[joeybubbles]

Sherrydenice

The neurologist at the Cleveland Clinic put me on Valtrex (an antiviral) suppression therapy for one year.  He said it is possible that the herpes virus got into the nerves and is causing the tinnitus and occasional episodes of dizziness.
The odd thing is that I was on it for several months before the burning sensation of my skin started, so I wonder if it is from something else.  

I am not normally an anxious person at all but I have to admit I am very concerned that this will get worse.  What scares me is that I am often thinking about the ringing in my ears and burning pain in my arms and legs, instead of what is going on around me.  I'll keep plugging away at doctors and hopefully something will come up.  I tried to make an appointment with a doctor that I heard was excellent at the Cleveland clinic and the next available appointment was in 2007!!  

take care

[SherryDenice]

2007?  HOLY COW!

I'd be calling around to other doctors!  

If the burning started after you started the medication, it could be from the medication.  Look up the medication and see if that could be a side effect.

Good luck to you!

I am ALWAYS thinking the burning and not what's going on around me.  Which is AWFUL because I have a 7 yr-old son who is the light of my life and I have a hard time keeping my thoughts together on stuff that needs to be done for him.

AHHH!

[spenjo]

My sensations seem to be helped with a warm bath too.  Also when I am active and busy I do not notice the sensations as they are rather mild.  The burning seems worse as the day wears on but never really gets severe.  It seems when walking or laying it is barely noticeable, sometime not at all noticeable when walking.  If I walk around the amusement park all day I don't notice it until I am sitting in the car on the way home.  Mine is also worsened when I stress out.  I too have a tight feeling occasionally in my soleus, outer side of shin area.  It doesn't seem like it can be anything too bad since I feel well otherwise.  It is just annoying because I try not to think about this but it is impossible and it makes me irritable.  I think my subconscious is constantly there, so even though I feel only mildly stressed, perhaps I am more so than I think.  It is hard to believe that stree could cause this. I too wonder if it is hormonal. I just wish I could find out what this is, treat it and move on.

[evansmom]

I know what you mean about the thoughts constantly being there.  When I first came home from my second doctor's appointment I started searching the internet for info on MS.  That was my first mistake.  I am glad I found this site it has quelled many of my fears.  I am hoping the ENT has some answers because my facial sensations seem to correlate with the location of my sinuses.

Like you, I can also become irritable thinking of what this might be.

I have read this site for a while and never posted a comment it does feel good to at least share the experience with others:)

[suzanne L.]

Hiya Evansmom - last time I saw you were on the ALS foum saying you had been diagnosed with ALS, etc.. are you OK? Sounds like it was not ALS?

[evansmom]

There must be two evansmoms - this was my first post:)

[plv]

my burning sensations always increase when i eat msg products and any produce sprayed with aux- grow or miracle grow check out your diet and see how many MSG products you are eating....also stay away from high glutamic  acid foods,you are all sensative to msg

[plv]

most doctors look and look and find nothing..........they don't want to admit msg is slowly killng a lot of people...it effects 25% 0f the population but it really effects more people because most people don't know or don't complain........what i do is first stay as far away as i can from MONO SODIUM GLUTAMATE .....( the bad kind is , the free form.).........i take MAGNESIUM ,not the elemental oxide kind,the latest i am trying is  mag and ascorbic acid    ( not vitamin c) ...i also am substituting ST> JOHN'S wort   ( AT 7PM FOR ME YOU ARE DIFFERENT FIND WHAT WORKS BEST FOR YOU .......For  my amtriptyline,,,,,,,,,,,,THEY SAY EAT RAW FISH BUT I CAN'T AND WON'T TRY IT...............AT NIGHT I TAKE gaba TO HELP ME SLEEP.......did YOU EVER NOTICE WHEN YOU WAKE UP YOU HAVE NO PAIN UNTIL YOU EAT...............MY GUESS IS THAT THE WATER HAS MSG IN IT TO...THANK THE japenese (DON'T FORGET WE BOMBED THEM NOW THEY WILL HAVE THE LAST LAUGH), AND OUR government FOR LETTING ALL THE FOOD MANUFACTURERS HIDE IT IN CORN SYRUP  AND ALL OTHER **** INGREDIENTS ALL THE PRODUCTS THAT HAVE MORE THAN FIVE INGRIDENTS....MOST FRUITS AND VEGETABLES THAT LOOK SO damn big hurt my skin the most they burn the hell out of my feet

[plv]

STAY AWAY FROM aspartame .(...AND msg).........THEY ARE BOTH CAUSES OF ALL THE PEOPLE ON THIS PAGE THAT ARE COMPLAINING OF BURNING SESSATIONS

[plv]

SORRY ABOUT THE SPELLING....(ON ALL MY POSTS... FROM(PLV)........THEY ARE BOTH NEURO TOXIC AND NEURO EXCITOGENS..........I GUESS ALL THE DOCTORS SHOULD FOCUS MORE ON THE THEM INSTEAD OF COMING UP WITH EXCUSES AND SAYING THEY CAN'T FIND THE CAUSE,,ALSO,YOU CAN'T EAT TOMATOE SAUCES ANYMORE,UNLESS YOUR SYMPTOMS ARE NOT AS BAD AS MINE .......i STOPPED 1 YR AGO..................life can be ruff

[plv]

look AT YOUR TOTAL DIET BEFORE YOU MOAN ABOUT YOUR PAIN,YOU WILL ALL SEE THAT THE WORLD HAS STRAYED AS FAR AS POSSIBLE FROM THE REAL FOOD WE EVOLVED ON FROM THE BEGINNING...............LISTEN TO WHAT YOU FEEL AND WHAT YOUR BODY TELS YOU AND IF A FOOD TASTES SO GOOD ITS BECAUSE THERE IS msg or aspartame in it,,,,,,,,,,,,,,,,,,ITS AS SIMPLE AS THAT AND DON'T THINK ITS MORE THAN THAT FOR 99% OF YOU ON THIS PAGE I HAVE READ ALL YOUR COMMENTS...................MOST DOCTORS DON'T CARE BECAUSE IT DOESN'T EFFECT THEM AT THIS POINT IN TIME,,,,,,,WHEN YOU ARE BUSY YOUR MIND WILL TAKE THE FOCUS OFF THE PAIN .....i LIKE TO WALK AAAAND DON'T WORRY YOUSELF TO DEATH YOU WON'T DIE FROM IT JUST BABY YOURSELF AND STAY AWAY FROM msg AS MUCH AS POSSIBLE.......I WILL BE BACK

[Karen52]

I notice a difference when I don't eat the nightshades (which i love) potatoes and tomatoes. I have less body aches. Also gave up soda years ago. Also msg and gluten is well known to be poison especially to als people. But PLV what DO you eat? It's all so confusing and complicated....

[plv]

karen ,it is very ruff to live in this world if you get nerve damage.I first seek out fruits that don't look so big which are most likely spray with miracle grow some  like banana and kiwi are not....Not all countries spray their crops with growth spray.....cucumbers don't hurt me but watermelon does real bad.I can eat any pastas with butter no tomatoe sauce or I will pay the price.Romaine lettuce hurts but not as bad. I eat rice ,most all nuts my diet is varied but limited.WHEN I first saw a neurologist 3 years ago I had a level 9 pain ,now after learning all i could about it all i often can get through the day with a level 2 pain ( 10 being extreme) and almost no pain meds .MSG is the major cause of a lot of pain and staying away from it as much as possible will also help you in the short AND the long term

[plv]

KAREN..........all meats grass fed when I want to spend the extra money..... fresh not farmed fish and  poultry.....eggs,so you see if you try you can avoid mgs but it is hard to stay away from all the junk..............