Hi, I'm Leslie & I feel the same as many of you. I was diagonsed with what I thought was Small Nerve Neuropathy, but the more I look, I can't seem to find that - only Small Fiber Neuropathy.
To tell my story and to make it short....
I was diagnosed w/ADD in 1987
I was diagnosed with Rheumatoid Arthritis in 1994 after I fell at school a couple times because of the floor being so slippery after a morning rain storm.
Everything was in control until I had a cold in Feb 2004 - weeks after my husband had surgery, I was in a drivers course class (long story) there were many stresses in my life at the time & I became sick with an ear infection, sinus infection, & strep throat - I went to the doctor towards the end of the infections just to only get an antibiotic and within 3 weeks - I started limping.
Within days to months - I went from limping to not being to walk or lay down. My pain is the worst when elevated. In fact as much as it hurt when I walked - it hurt worse at night when in bed.
Had some nerve tests done locally here in Lorain County, but they couldn't help me - Sent me down to University Hospital in Cleveland & Had a great doctor named Dr. Khirtiji! He really helped me - listened to me - and was willing to do what it took to find out what was wrong, and how to fix it. Unfortunately, I had to switch insurances & had to stop seeing him. I hate that I went on my husbands & didn't stay wiht mine longer...But anyways, I was diagnosed with Small Nerve Neuropathy & already had been diagnosed with Fibromyalgia a few months before this.
So does anyone know of any good Neurologists at Cleveland Clinic? I guess my first question... And my second is: Is Small Nerve Neuropathy the same as Small Fiber Neuropathy?
I am in Canada so I can't help with the neurologist part of your question but I can tell you that I have had SFN for 5 1/2 years now. I have been through all kinds medicationa dn B12 injections and nothing helped at all!! I was at my wits end and the pain at night when I was laying down was unbearable. At the beginning of this summer my daughter convinced me to give acupuncture a try and I can not believe the relief I have gotten!
Really, it has been the one thing that has helped the most. I go every week for a treatment and my pain levels have gone from a 9 to a 3 or 4.
I am so sorry that you are having so much pain. It is a roller coaster ride to try to find something that will help. My problem was both of my feet,
I wish you luck in getting some help and some relief!
Daisy, so happy to hear you have found pain relief. Hooray! And Leslie, sounds like you have been hit with a triple whammy, what with SFN, fibromyalgia, and RA. I only have SFN, but I think advice that would apply to all of your conditions is to find the best doctor possible who will listen to you and will try all the possibilities so you can find pain relief. Don't give up because any one or more doctors isn't helpful for you. Good luck. - Ruby
I recently met with Dr. Jinny Tavee at the Cleveland Clinic and was very impressed with her. Here's a link to an article she helped co-write: http://www.ccjm.org/content/76/5/297.full that you might find helpful.
The Following User Says Thank You to 1islandgirl For This Useful Post: Lizpaterson (01-05-2011)
Glad you found it interesting. Dr. Tavee is such a personable doctor... unlike an "specialist" I've worked with before. She will take the time to work with you and, at least from current my experience, is showing me that she genuinely cares about my well-being. This is true whether working with her there at the Cleveland Clinic or back at home by way of conference calls.
Last edited by 1islandgirl; 01-03-2011 at 01:31 AM.