Multiple symtom pain, numbness

[Bobaloo50]

I have been duffering from multiple symptoms since late May of this year, going from doctor to doctor with no diagnosis or help as of yet.  It started with a sharp burning pain in my left shoulderblade.  I thought it might be a pinched nerve since it was causing numbness in the 3 fingers of my left hand, so I visited a chiropractor.  After 4 visits, the pain was so intense I was holding my arm in close to my body and the numbness was moving up my arm, I went to my GP for help.  He recommended I stop the chiro, and sent me for an MRI of my neck & upper spine.  It showed only minor protrusion on a couple discs.  Not considered bad enough to cause that much pain.  I was sent to a neurologist.  By that time, the pain & numbness had spread toboth feet & my other hand & arm.  I was having balance problems, lots of pain, both deep pain in mostly my arms & legs & burning skin. He immediately hospitalized me for another MRI of my brain & spine with & without contrast, plus blood work, saying he suspected MS.  Everything came back clear & I went home.  It just kept getting worse.  My face & lips went numb, legs up to knees, further some days, forearms.  Mornings were bad, middle of day better but never gone, night time worse again.  Couldn't sleep.  Neurologist did nerve test (electrical one) & again all normal responses.  Sent me to University of Iowa Rheumatolgy.  Physical exam still showing balance issues, more bloodwork-all good. Low Vitamin D, so took high doses for 2 months, no change in symptoms.  Tryed moving me to ENT for balance issues, they declined to see me.  Moved me to neurology, did physical exam, looked over all previous tests,same results.  Balance issues still there, tinnitis, numbness, legs & arms feel like I am wearing tight elastic stockings all the time, pain, over senstive skin.  I don't understand how I can feel so numb, everything dull & heavy, & still have all this pain, & still I'm told there is no nerve damage.  I feel like I'm in someone else's body!  No diagnosis.  Now on 1200 mg of gabopentin.  So far not helping.  Referred to Mayo neurology, declined an appointment.  No relief - no answers.  Tonight, dizziness worse than usual.  Still going to work everyday, I'm an accountant, but if days were as bad as evenings, usually in tears from pain by 7 pm, it would be very difficult to work.  Very tired all the time.  My GP said he will increase med if no better to try to help with pain.  Please advise!

[pioxen]

Bobaloo

  Many of the posts here including your original seem close to mine.  You may have a form of periphrial neuropathy, especially C-fiber (small fiber) neuropathy.  It can cause all the symptoms you're describing.  I haven't been formally diganosed, but all other tests exhausted.  I'm going back to the Oregon Nerve Center in Portland OR in February.  The suspect my pain, numbness, tingling, shock sensations, lightheadedness, and other symptoms stem from C-fiber neuropathy.  The main medication to treat it is gabopentin, which you're already on.  They have me on Oxycontin 10mg twice a day, which still has me feeling burning, tingling, etc, but makes it tollerable to get through the day.  I would suggest having them perform isolated nerve testing to look for c-fiber neuropathy... might find your answer...

[ginak]

Hello everyone,

I am undiagnosed, but I have been diagnosed with Epstein Barr and I have extremely low Vitamin D levels. I have had several diagnostic tests to rule out MS. (EVP, cervical MRI, brain MRI-Sept 08), EMG/NCV, and bone scan. All of my tests have been normal with the exception of the Epstein Barr titers and low Vitamin D. My neuro, who is the best one in town sees me every month and of course will not completely rule out MS but is telling me that he thinks this is part of a viral process. I forgot to mention that I had a spinal tap that was (+) for myelin sheath based protein, but (-) for oligoclonal bands. I started on a natural supplement 3 weeks ago and this has helped my tingling to some degree. However, I am still experiencing numbness in limbs when sleeping(mostly hands) and migratory tingling that is very mild. I have severe tinnitus in one ear and pulsatile tinnitus in the other ear. I also have an internal tremor that is more noticeable at rest. The neurologist that I have is wonderful. He is my 2nd neurologist. My first neurologist completely ruled out MS but I have developed more symptoms since the last time I saw her. My neurologist is not a MS specialist and neither is the 1st neurologist. I was wondering if any of you thought I should seek a 3rd opinion about my symptoms or if I should continue to be worked up monthly by my current neurologist who is very involved? I have a low normal TSH and I will be going back to the endocrinologist in the next week and I also have an appt with a rheumy within the next 2 weeks. Am I being too anxious or should I just wait until after the endo and rheumy's visit before trying to pursue another neuro's opinion.

All 3 of my EBV titers were very high and I was told that it could take years before all of the symptoms subside. I am also aware of the relationship between this and MS. I have been having these issues since having a very bad viral infection this past summer, which was almost 6 months ago.

Please let me know what you think I should do. I have also been advised to go through IGENEX to have the most accurate lyme disease test that I could have done. The cost of the test is expensive, but I am willing to pay it if it will give me more answers. I had the Western Blot test and 2 bands came out positive, but overall, the test was negative.

Your feedback is greatly appreciated.

Gina K

[Dinhi]

I have been suffering similar symptoms for over 7 months now, they range like this:

Numb skin-heavy-arms and legs, stomach, back, shoulders
Numb skin on my jaw, lips, face-heavy eye lids
Tingling hot flesh spots at times
Tingling cold all the time in "patches" different places on either my face or my arms or legs, mostly on the palm part of my thumbs and patches on my face
Pins and needles-arms, face, jaw--but not like coming off Novocaine, more like real pins pricking your face in multiple spots all at once.

I remember when the numbness moved to my face, it started on my jaw, and came in prickly like, after it moved over a patch of skin, it became numb and remains that way.  This was the same over my entire body, every bit--I describe it like the surface of the skin is numb and is in this constant state much like you feel when you've been to the dentist and the Novocaine is just beginning to ware off, only it stops just before it is done.

I have pain, but I am so tolerant to it, I didn't bring it up to the neurologist in September.  They did  a nerve conduction test on my legs, blood work and two MRI's, one on the head and one on my neck.  I do not suffer any vison loss or difficulty walking.

I go back to see the doctor this Monday, and was informed yesterday that I will be seeing his attending physician--this will only be my second appointment with this neurologist and I thought a fairly important one given all the tests I had done.

I wish you the best, and will post my results--its creepy for me, as I can imagine it is for you, everything I could find online about the symptoms related to something called a facial nerve shwannoma, but I doubt I can talk the AP into looking into the possibilities--I will probably have to wait till the numbness reaches my bladder before I will get a correct diagnosis.

Dinhi

[ginak]

I am having the same exact problems. I have been going through this since July. I have no answers. I have had a large number of tests. The only thing that has come back elevated were my Epstein Barr titers and an extremely low Vitamin D. I have an appt with a rheumatologist next week and I pray that I can at least get some answers.