Hi everyone, I am so glad that I found this site...but now that I'm here, I'm not really sure where I belong...because I'm not yet diagnosed with anything.

Although my GP was initially concerned I may have MS, so far my MRI's have been basically negative. Perhaps it's something else?

I am currently under the care of a GP, an ophthamologist, and a neurologist. All have mentioned the possiblility of MS, but they don't have real "proof" of anything...and I'm not sure that much else has been ruled out, either. I've had two (relatively) clear MRIs in the past two years, but I have Babinski's sign in both feet, and a few other obvious signs and symptoms. I'm scheduled for two types of evoked potentials tests on July 13th, 2009. I hope that something helpful shows up.

...in order to share why I'm here, I've included (below) the general info that I used in order to introduce myself on the main "welcome" forum (and the MS forum) a couple of days ago:

I don't have a diagnosis yet, but have several symptoms that are neuropathic. In the fall of 2007 I developed double vision. I've also been having muscle twitches for more than 3 months now...every day, all day. I get sharp 'electric' type pain sometimes down a limb. Sometimes my feet go numb, sometimes my hands tingle. I have had a rash on my face for about 10 years now. I was told it was rosacea though. I have some hair loss too. There's more, but I think those are my main symptoms.

My mom has primary progressive multiple sclerosis. She is 56 years old and has lived in a nursing home for 10 years already. I have two aunts that were diagnosed with SLE (Lupus)...both on my dad's side of the family. One is struggling with lung problems mostly, and the younger aunt (58 years old) passed away due to Lupus in April 2009.

I don't know what I have, but it would be good to find out. I'm hoping to learn from those on this forum...about their lives and the roads to (and beyond) their diagnosis.

...please let me know your suggestions, in terms of asking for certain tests and also just general medical info that I should know about. What symptoms did you present with...and how long did it take to get a diagnosis? Should I be seeing a rheumatologist...or just stick with the professionals already involved in my care?

Thank you for taking the time to read my long post.

Kind regards,

Jayne

It does sound as if you have the right docs working for you tho, and I DO mean working for you. That can make all the difference in the long term.

Here is a web site often referred to in the peripheral neuropathy forum:
http://neuromuscular.wustl.edu/
This is the index page and I would encourage you to take a first look at the 'Neuromuscular Evaluation' portion of the site as an introduction to a lot of the tech talk on this web site. Once grounded, take a look at the 'Antibody Testing' section to see how far your docs are going in regards to testing.

Just keep in mind that many many issues neurological are never as clear cut as one would like to think. Never demand any specific test from a doc -they will be insulted and become defensive, just ask 'What about X?' And maybe say you read it from some credible web site such as the National Institutes of Health or Mayo Clinic or the like. Otherwise you could be dismissed as something of a hypochondriac or worse.

Another resource from the Peripheral Neuropathy forums is a web site called
Liza Jane.org which includes a whole slew of tests relating to lots of neuro issues.

Furthere, be sure to check out the 'Stickies' at the top of each forum's posts in both the MS and Lupus forums.

I hope this helps you find your way and a way to cope with it all 's - j

Your story reminds me so much of my own... my neuro, ophthalmologist (and neuro-ophthalmologist), Endocrinologist, and all my other doctors thought I could have MS as I had all of the symptoms you are describing (Rosacia-like face problems, hair loss, pain, numbness, etc)... although my pain was located primarily in my feet (some occasional hand issues), and I had Optic Neuritis- a major marker of MS. They did every test they could- MRI's (of most of my body) X-rays, CAT scans, a slew of blood tests including tests for rare diseases and disorders I would never have- like HIV. They even did a Spinal Tap, multiple EMG's and a Punch Biopsy. They all came back clean- except the Biopsy which showed I had Peripheral Neuropathy (But that was obvious) and the blood tests which showed all my inflammatory markers were very high. Finally they sent me to a Rheumatologist who eventually, after even more tests figured out I have some kind of Auto Immune Disease (but they can't figure out which one) This all took about 2 years from begining to now- I began to exhibit symptoms Two years ago on May 25th.

To make a long story short- they put me on a drug called Methotrexate which is helping reduce the inflammation and as a result the pain is reducing. I'm still got perfect yet (and not as good as I'd like either) but I am a hell of a lot better than I was a year ago. I can now walk a round and go to the gym (with an increase in pain, but not intolerable) where as a year ago I couldn't walk from one room to the other without crying from the pain.

I think with your family history and symptoms it could never hurt to see another doctor/get another opinion. I would try a Rheumatologist...your Neuro should be able to recommend someone. I do hope you feel better, and let us know how you are making out!