Hi, I posted in here about 1 1/2 years ago. 2 years ago woke up with tinnitus in in head which has never gone away. went to a concert and afterwards couldn't walk for 12 hours without falling over-no sense of balance but not spinning feeling. since then motion sickness feeling which has progressed to everyday. anytime i get in a car or shop or for no reason at all. all i want to do anymore is sit because i don't feel well. :'( one year ago started having burning skin sensation on my arms and face which has gotten more severe but is still intermittent. My hearing was within normal range 2 years ago and hasn't seemed to have gotten worse. i frequently get cold sore which i take valtrex. I took valtrex daily for a few months to see if it would help (it didn't) and then i didn't take it for a few months to see if it was a reactiion to the med (it wasn't). I am not an anxious person and don't feel overly stressed except for what is going on. mri of spine, brain and auditory canals normal. cbc, bmp, ana, sed rate, monoclonal cells, lyme titer, thyroid all negative. b12 was 311, gliadin igg very mildly elevated (he didn't think it was anything) Neuro exam normal except possible disturbance of vestibular system on right side. neurologist thought possible migraines or said he could treat with diuretics which sometimes help people. he gave me names of two "dizzy doctors" dr leigh at university in cleveland and dr hammid in chagrin falls in cleveand area. He doesn't think it is peripheral neuropathy. I have an appt with a dr levin at cleveland clinic who is a specialist in neuromuscular diseases and neuropathy and now wonder if i should keep it. any suggestions would be helpful. Have any of you had these similar symptoms? anyone had this burning skin feeling. could i have menieres for 2 years now and not have hearing loss? thank you so much jane
Hi Jane! Wow. I understand how frustrating and frightening it is to now know what the #*!*#! is going on, but times like this it's important to look back with a modicum of relief as to what is NOT going on. Alot of "stuff" has been ruled OUT and that is a GOOD THING! I would keep the appointment with the specialist in neuropathy. Perhaps from there, you could obtain a referral to a neurotologist for the balance/tinnitus issues. Lots of folks on this website have recommended neurotologists and have had positive experiences with these specialists. Keep us posted! Good luck to you! Jenski
Hi Jane, Welcome back. Your description sure doesn't sound like meniere's. Wish I could give some kind of an idea what it is but one thing I can say - I think you should keep your appointment with this specialist. Sorry you've been going through it so long without any idea as to what it is - that must be very frustrating. Good luck with your appointment....I hope the specialist can get to the bottom of it. Amethyst
The tinnitus and motion sickness thing I deal with regularly, but the other symptoms don't seem "normal" for meniere's. It may be a good idea to get that checked put further. Might you be taking a prescription or supplement that would make your skin feel like it's burning? Just a thought that crossed my mind. Try chewing on a few pieces of dried crystallized ginger for the motion sickness feeling. It really helps me,and I've been doing that for about 2 years now. If you can find it in bulk bins at a supermarket it's really inexpensive. You can also drink real ginger soda, let it go a bit flat first. I prefer the dried ginger as I can keep a small bag with me in my purse or car too.
I would say for myself to keep the appt. It's hard to keep going to the dr. but sometimes when l least expect it I get the most help. It will be good to hear their opinion. I have no idea if it's MM for you.......my hearing loss came on very gradually, I think at 2 years it was still all there, so that's hard to tell from just that one symptom. Good luck! Lisa
