Burning and Partial Numbness

[John]

I'm a 45 year old male, and until 6 months ago in good health.  At that time I began experiencing numbness and burning in a small area (about 2" in diameter) on my right thigh.  Approximately one week after the burning in my thigh showed up I began having stamina and what seemed like equilibrium difficulties.  I could get a good night's rest and an hour or so later I felt like the gravity had been turned up several percentage points.  I generally felt like my body was collapsing in on itself. Going up stairs was a slow process and I didn't feel too stable. I did not have any headaches of fever during this time, did not have an accident, and wasn't knowingly exposed to any toxins or chemicals. The only other neurological problem that I've experienced was Bell's Palsy in the right side of my face nearly 20 years ago.

I saw my GP after the first month. He did some basic blood tests, including, CPK, thyroid and blood sugar. All results were normal. Two weeks later I was still feeling lousy, the burning in my thigh was expanding, and I was starting to get some burning in my right foot and the right corner of my mouth. My GP referred me to a neurologist and after a 3-week wait before I could schedule a visit my malaise subsided and I felt that the burning and slight numbness in my cheek might have been diminishing.

The neurologist conducted a basic exam and did an EMG on my right leg with normal results. He suggested a CT scan and more blood tests. All were normal. After a couple of weeks the burning and numbness expanded to other areas of my body.  A MRI of my head was ordered as well as a B-12 and Lymes test. At that time, I was also placed on 900 mg/day of Neurontin. The blood tests were normal, as was the MRI.

The burning and numbness have continued to spread and are starting to effect my job where I need to do quite a bit of walking and driving.  My dosage of Neurontin is now up to 2400 mg/day. I have a partial loss of sensation (I still can feel a pin or a cotton ball) in my checks, lips, forehead, and scalp, everything from my waist down, forearms and just last week my fingers started to lose some feeling. I have good days and bad days with my level and locations of pain. Occasionally my knees and hips ache so bad that it is difficult to walk, the burning in my feet reaches a level that it becomes hard to work the accelerator, brake and clutch. In some locations like my fingers, I never have had any burning, just loss of sensitivity. My motor nerves still seem to be working ok although, as the partial numbness moved into my hands, my ring and little fingers feel like they are swollen (as my lips frequently do) and it seems like they just don't want to work quite right. Although better, my stamina may be only 50 to 75% of what it was before this started.

Next week I am scheduled to have a lumbar puncture. While the analysis of the spinal fluid may reveal what is going on in my case, I seem to recall from a previous search of the archives someone with similar conditions. However, I don’t recall if a cause or remedy was mentioned and I haven’t been able to find the posting again.

Do you have any comments on my symptoms that may provide me some insight as well as discussion items for my Dr.?

Thanks for any information

John

[CCF Neuro[P] MD, RPS]

Dear John:

I am alittle stumped at your symptoms.  Everything seems normal and with the normal EMG study it seems that there is not an usual etiology to your problem.  I would have suspected vitamin B12 with your symptoms.  Even with a normal B12 level we have seen this be the problem, but usually the demyelination of the large sensory fibers will be detected on the EMG study.  At least with the normal studies one can rule out the real major worrisome problems like ALS, tumor, paraneoplastic, diabetes, alcoholism, porphoria, hereditary sensory neuropathies, mitochondria cytopathies, toxins etc.  See what the CSF turns up, but I will bet that it too will be normal. I am not sure what is causing your sensory neuropathy, with a normal EMG study.  It will have to be something small fiber but as what the etiology is I am unsure.

Sorry, that I am not much of a help.  Let us know what your physician thinks.

CCF Neuro MD

[gat]

Hi, John this is seeming to be a more common condition then i've ever seen, my wife has very simailar symptoms to you, you can read below what I wrote up.  your not alone, we still are yet to have a diangosis, like you so far normal testing.  I hope we all fing an answer but know your not alone.  Makes life for the person suffering almost unbearable.  She's very sad, feels like a failure and thinks only the end is near.  Who knows.  only god I guess, Good luck John.  At this rate we can get a support group for the completely numb facial tingle body burning phenomena, seems to be alot on lately.

[DENISE]

Hello, I am sorry to post under this person's question, but I have been having trouble trying to post. I have been having alot of burning pain in my upper back by my spine for some time now. When my husband will try to massage my back I flinch because it hurts to even have him touch the area. When I lay on my carpeted floor on my back it hurts as well. My question is, I am about 60 pounds overweight, could my weight be causing the problem?

[John]

Gat,

Thanks for your comments.  I'm sorry to hear about your wife.  The  pain does tend to wear on a person.  If the 2400 mg/day of Neurontin is doing me any good, I shudder to think what it would be like without it.

I definitely would like to read your posting and any replies.  What was your title and the date so I can find it in the archives?  

Best of luck to you.  Perhaps we'll correspond again.  If I find out anything from my puncture,  I'll let you know.

[janet]

I have a lot of the symptoms that you have, John.  None of the doctors I have seen seem to know what is the problem or how to treat it.  I feel like a guinea pig and nothing seems to help.

I have a schwanoma (benign tumor) on the nerve that is between fourth and fifth lumbar.  It was found about 5 years ago and has not grown (MRI each year).  The doctors say it would not cause the pain but I'm not sure.  I was interested if anyone reading this has or had this same tumor in the same place and if it has caused pain and what type of pain.  If you have had surgery, what was the result.  Specifically, was there nerve damage?

Sorry to tag along on your posting, John, but I too cannot post a new question.  

This is a great site.

[Joe]

Would MS be ruled out?  I had similar symptoms.  Normal brain MRI.  Saw a series of specialists.... neurologist thought everything was normal and felt it was back problems.  Ortho noticed the clonus and brisk reflexes.  Sent back to neuro.  Then I had VER.  Abnormal. Then spinal MRIs showed two lesions (with contrast).  I am now on Avonex.

[gat]

Hi joe,

With my wife the Dr seemed to think it was not MS because of the continued progression, sudden  onset, continuious symptoms..with no past history of any complaints or problems.  Who knows though, she had the VEP test and somatosensory on Friday, are those the ones you said above were abmornal?  We get her results soon and then if its abnormal a CSF.  The testing person was very tight lipped, and when I asked her well is anything abnormal she just said well... I really cannot say these tests are very sensetive.  And she then showed me the chart, like a brain wave thing.. I am just wonderinf what someone with MS in the spine's chart would look like?  I know they measure the time it takes for the charge to reach certain points in the spine.. heck Im no good at speculating, but it will be 3 days of sheer hell untill we get the resutls.. I do recall her saying you were more tense when we did this side.. whatever that means.  Also with the VEP I saw a dip on one of the waves, but she said when you see the dip towards the end of the exam something is seriously wrong.. my wifes dip was in the beginning..    I'll let ya all know.  Thanks everyone!

[Joe - for Gat and Dr.]

I had a Visual evoked response, which shows if there is demyelination of the optic nerve (eyes).  I had a slower response time, but not way out there....  I think 1.2 or something like that.  Then a cervical and thoracic MRI WITH CONTRAST!  That is where there were two lesions. I did not have the lumbar puncture.  Quite frankly when I asked the neuro what he would diagnose with a clean lumbar he said it would still be MS and he would recommend Avonex.  He said about 10 or 15% of patients will have clean/normal spinal fluid.  So I thought why go through the pain/discomfort.  So I  am on Avonex.  It is not a death sentence.  I am 36.... male, happily married.... it is just a nuisance.....  life goes on.  I thank God every day that it is not something worse.... I didn't use to think that...  but it is so very true.

By the way, my numbness was not in my face, but in my left leg.  Burning in my legs.  I am taking 400 to 800 milligrams of Neurontin a day....  God bless!

[M-BURR]

Suffering with (Antomic neuropathy)over two yrs.Take-ing 400mg.Neurotin,fr.times per day.I have burning in hands and feet ,also on Paxil)for depression.My Neurologist informs me their is no real cure for this desease,hopefully soon their will be a cure for all kinds of Neuropathy.

[Melissa Wolford]

If it is not MS please have your doctor check for syringomyelia.  This is what I have

[Lynn]

Like John, my husband has been experiencing increased pain and numbness in all parts of his body. Has been almost 1 year since symtoms began.  All test have come back normal, except spinal tap fluid showed elevated protein level.  He is a 40 year old and protein is at 54, still waiting on results from second spinal tap.  Along with extreme pain and numbness, he has no appitite, extreme fatigue, loss of muscle, forgetfulness, coordination is getting worse.  Has very pain skin color and seems to have dialated pupils most of the time.  Has effected his work, travels internationally, also immunization specialist concluded not due to any vaccines including Polio vacc. a year ago when symtoms first started.  Currently going to UCSF and on 2 neurologist.  Concerned greatly since health is getting worse and no one seems to know what it is.  Please advise on any info you may have.  My email is ***@****

Lynn

[GaT ?? for Joe]

Hi Joe,

It sounds like your doing good, im glad to hear that.  Can I ask you a few more ??  They say typically MS presents with either visual or Gait disturbances.  Hers is more sensory yet I hear thats common to.  She's not having any balance problems or whatnot.  Yet I would imagine your not either since its located in your cervical region.

Did your Neuro do a Neurological exam, the heal walk, the toe walk, all thoes good ones like standing with arms out and eyes closed?  Oh yea, do you get muscle twitches all over to?

Guess what?  By a miracle we got an appointment here at the clinic tomorrow, a real fluke, someone else canceled and we got it!  I'll keep you all posted on how it goes.  For now her only problem is the numb face and tingle on parts of skin.  That alone is bad!  She's uncomfortable.

[Joe]

VER was abnormal, but I've had no visual problems.  I had bell's 13 years ago, but no visual.

Neuro did all kinds of tests.... touching nose, walking, etc... my legs do bother me some, especially the clonus....  my balance is off sometimes, especially for about three days after Avonex injection.... everyone is shocked when they find out I have MS because I walk normally....  my knees burn, hence the neurontin....

Neuro said my symptoms were extremely mild.... three neuros recommended waiting a year for the AVONEX (plus my PCP).... but I decided to attack it aggressively.... thanks to the docs here...

Let me know how it goes.

[m.jones]

Dear John,  

            I know pain can just about drive you out of your
              mind put your trust in God he will get you through
              this, he created you and knows you better than a
              a doctor. I would recommend getting prayer for a
              healing at a local assembly of God church. He has
              helped me through my own pain and he will help you.
              Hang in there.


                            M.Jones

[John-Thanks, Dr. and everyone]

My thanks to the Dr. and all of you that offered your comments and concerns.

I finally received the results from my lumbar puncture.  Dr. if you are still monitoring this thread, you were correct; the results were normal.

You mentioned in your reply to let you know what my neurologist thought. Well, he was an hour late for the procedure.  It was late last Friday afternoon. He obtained the sample. Reminded me to lay flat, stay inactive over the weekend and was out the door. All in about 20 minutes.  I’m not sure, if he even remembered seeing me previously. When he asked how I was doing and I mentioned my current symptoms, he looked a little perplexed, as if he didn’t know what I was talking about.  After all, it had been over three months since I had seen him or even spoke to him for that matter.  So, I didn’t have much time to ask him much and the only communication I have with him on a regular basis is through voice mail to his nurse.

He is starting me on Decadron. I hope that gives me some relief from the pain. The discomfort (dull ache) in my joints has spread from my knees and hips to my shoulders, elbows and wrists. The burning continues in my legs and feet and my sense of touch has greatly diminished in my fingers. I don’t know if it is related but the "background" noise in my ears is getting loud enough that I really need to concentrate at times to pick up things on the TV or during conversations where there is a lot of background noise.

Thanks again and I wish all of you the best, John

[Arba]

HI John.... I take the Neurontin for my shingles pain... I saw a different doc and he added Gabitril too it.  The combo seemed to helped a lot.  Good Luck.... Have you checked out PUBMED.com  Just a thought...
PS.  I am not a dr. Just a person who has experienced cronic pain..SHingles.   I do agree that after a long bout of pain the body tends to get depressed...Prozac worked for me.. There are many out there.. One just has to try different ones to see what works for them... How about Elavil???  Not a bad start.. Aloha
I was hit with shingles at age 39.. I am now 47 learning to live a stress free life. Ha  Good luck..

[stacy]

JOHN,
MY HUSBAND HAS BEEN HAVING SOME OF THE SAME SYMPTOMS BUT IS ALSO COVERED IN HIVES OR A RASH WE ARE NOT SURE.  HE HAS HAD SEVERE JOINT PAIN,GROIN PAIN,NUMBNESS IN THE FINGER TIPS, BURNING SKIN,LOWER BACK PAIN AND SOMETIMES FEVER.  WE HAD BEEN DOCTORING FOR 6 WEEKS AND TODAY THEY FINNALLY TOLD US HE HAS ERICULOSIS.  I KNOW THE SPELLING IS INCORRECT BUT THAT IS HOW IT SOUNDS.  YOU GET THIS FROM A FEMALE NORMAL WOODTICK WHEN SHE IS ABOUT TO LAY HER EGGS SHE CARRIES A BACTERIA THAT WHEN IT GETS INTO THE BLOOD STREAM IT ACTS JUST LIKE LYMES DISEASE.  IF YOU HAVEN'T BEEN TESTED PLEASE GET TESTED FOR THIS AND LYMES AGAIN THEY SAY IT IS VERY EASY TO MISS.

GOOD LUCK

[Veronica]

I am suffering from a neuromuscular disorder following a severe knee injury,  I have had severe burning in my groin for a year or more.  today my groin was burning for several hours. Nothing new positions or ice would relieve the pain.  Next thing I knew my body went numb all over, I felt my right arm go completely numb and at the same time felt as thought I were going to pass out.  My heart is beating beating between 90-120 beats per minute.  I feel like I'm on a strong pain killer, but I'm not. I thought may be it was a pinched nerver, or a reaction to the trigger point therapy.

[Beth]

After reading the message about your burning sensation...I am familiar with ms.and i know they can do a punture sometimes and tell whether or not you have it.It starts with numbness on one side mostly mine has anyway.cat scans and mri cannot show it sometimes.id say thats whats up with you.also b12 and 6 is suggessted for people with ms and such disorders...hope this can help ya some

[cindy atkins]

john,

i have been experienceing since April 1997 similar symptoms.  I have numbness/tingling in my left foot, sometimes right foot, from the ankle down(feels like you are wearing a glove), primarily left foot and also sometimes my left arm (from elbow down) numbness/tingling.  I have seen 3 neurologists, 2 general practitioners, podiatrist, and a rheumologist.  I've had 3 MRI's with contrast, evoked potential test, doppler test, nerve conduction test, lupus test, b12 test, heavy metal test, all kinds of blood work(from HIV test to every other kind you can name).  I even tried anti-depressents(which I was totally against, and felt like a zombie, so i quittaking htem, they did not help anyway) .  I did everthing the doctors ask of me.  ALL TEST HAVE COME BACK NEGATIVE.  The doctors say MS - possible, but not probable; no to arthritis, no to everything.  the doctors say peripheral neuropathy(unknown); what exactly does that mean; they do not know.  Sometimes the numbness will go away for months, then it will return. I do nothing differnt in my lifestyle.  I have kept a calendar of what i eat, when i'm stressse, etc., no corelation.  I'm taking nothing and when it happens i just have to deal with it, like now.  it has been gone since Feb. 2000(except maybe 5 times) bt it started back on 9-25-00.  Best of luck to you and if you know anything I can do please let me know. TODAY STILL NO DIAGNOSIS.

Again, good luck

cindy

[Michelle]

Cindy, you symptoms sound very similar to mine. I've been experienceing feet numbness and tingling pretty consistently for about 3 months, along with calf and sporadic body twitching.  Saw a neurologist at the beginning of my symptoms, and he said it was "nothing."  Well, 3 months later, and they have gotten worse if anything.  Also recently have been experiencing some facial numbness and eyelid droopiness. I am very concerned, and almost convinced that I have MS. I see a neurologist at the end of November.  Have you had the body twitching also?

[larry acrey 1909 7809300]

5 years ago i was stuck over aperiod of just afew days with tingling in my figers tips .and then a burning tingling in my feet . now most every thing has gone to my feet. i do have a tightnest around my waist ,and a tighnest in my lower back.the more iam on my feet the worse my feet get ,but my feet allways heart.i have seen many doctors ,and specialist and many many tests.the doctors have left out nothing.some say maybe MS,or maybe transverse myelitis.also i get tired very easly.i would like to now if neurotin will help my pain.                                                                                                                              Thank you   larry

[larry acrey 1909 7809300]

5 years ago i was stuck over aperiod of just afew days with tingling in my figers tips .and then a burning tingling in my feet . now most every thing has gone to my feet. i do have a tightnest around my waist ,and a tighnest in my lower back.the more iam on my feet the worse my feet get ,but my feet allways heart.i have seen many doctors ,and specialist and many many tests.the doctors have left out nothing.some say maybe MS,or maybe transverse myelitis.also i get tired very easly.i would like to now if neurotin will help my pain.                                                                                                                              Thank you   larry

[larry acrey 1909 7809300]

5 years ago i was stuck over aperiod of just afew days with tingling in my figers tips .and then a burning tingling in my feet . now most every thing has gone to my feet. i do have a tightnest around my waist ,and a tighnest in my lower back.the more iam on my feet the worse my feet get ,but my feet allways heart.i have seen many doctors ,and specialist and many many tests.the doctors have left out nothing.some say maybe MS,or maybe transverse myelitis.also i get tired very easly.i would like to now if neurotin will help my pain.                                                                                                                              Thank you   larry

[steve]

John -

Any update on how you are doing?  I have just developed the exact same numbing/burning on a 2 inch patch of my right thigh too, so I'd be curious to get an update.

[Jackie lopez]

Hey my grandad has perfral neropthy 2 my mom  is trying everything and going nuts she cant stand 2 see it happen to her father what do u recomend we do?

[Kathi M]

I am 52 yrs old.  A few years ago, I was injured in a car accident - unfortunately this was only one of many (no I wasn't at fault).  As a result I suffer soft tissue/nerve damage in the neck, arms, back and suffer with migraine headaches, along with a few bulding cervical discs.  I have also had back pain and pain down my legs.  A couple of years ago I started having a lot of leg pain with some burning.  I thought it was the tile floor and was very careful to wear shoes...then I thought it was the long walks...then I blambed it on whatever I could dream up.  Now the pain in my legs is severe with major burning on the front of my calves.  The pain increases with excercise, standing, sitting.  Lying in bed only relieves some of the pressure, not the pain.  Often I can barely walk and my balance is off.  The pain in my forearms has increased and I am having spasms in my jaws.  Often I can not sleep at night since the pain seems to increase.  Sometimes, not often, the pain will decrease for awhile, thank goodness, and then suddenly increase dramatically when I stand or walk for just a few minutes.  My doctor has me on Neurontin (300 mg X 5 per day).  Recently, I had a lower back MRI which was normal.  I have decreased my blood pressure medication, Tenormin, without results.  My blood work is wonderful....potasium, B-12, sugar, etc.  Only my thyroid is off slightly (I was normal last year).  Any ideas?

[barbara biskupich]

My rt. foot feels like I have a tight glove on my fot with cnumbness coldness very uncomfortable feelingDiabetic 20 years cansomeone help me?

[kim]

Hi

Yes, I also experience many of the symptoms (tingling fingers, numbness in lips, slurring speech, twitches all over my body). I am just wondering whether this could be related to an infection? A year ago my symptoms started with numbness in my lips and teeth and difficulty speeking (slurred speech). It was also like I couldn't control my eyes, as if they were jumping. A week later I got a fever and two days later the symptoms disapeared. But two months later I started to get tingling fingers, pins and needles feeling  and twitches all over my body. Now the symptoms come and go and sometimes I suddenly have problems pronouncing words (slow speech, numbness in tongue).
Anyone can help? Could this be an infection or should I see a neuro?

[johninuk]

A related discussion, prickling skin, myoclonic jerks and some numbness was started.