Good MS Neurologist in TN?

[Meeshkabear]

Hi all...I have been told 6 times in the past 12 years that I have "classic clinical MS" by 3 neurologists, one internist, and one FPN - only then to be told when the MRI came back without lesions that it was "impossible to have MS without lesions". I have learned better since then - and also that since both my MRIs were done on lower power open MRI machines, we might as well have not done them at all when it comes to detecting lesions! Wow - could have saved some money there! Luckily, I have a great family practice nurse who believes in treating what she sees rather than a diagnosis so I am on a lot of the "right" medicines for my symptoms.

Now I am much better educated and ready to take control of getting an answer but - how do I find a "good" Dr. to go to for a diagnosis? Any ideas for screening them in advance? I have been unable to get health insurance due to these problems so I can't just keep paying for first time visits until I find someone. I am in Tennessee centrally located between Nashville, Knoxville and Chattanooga. I have called the National MS Society and they have given me a couple of names - but at this point I am so jaded, I even distrust that!

Thanks in advance for any ideas you can give me. Your posts have been really helpful in the search for answers so far.

[Meeshkabear]

Thanks - you're right! I hadn't thought of that...thanks for the uplifting!

Mee

[Meeshkabear]

Yep - going to pick up the last ones today. Although sometimes I wonder if it might be better to start fresh and let this person make up their own mind rather than be influenced by the previous MDs that didn't know what they were doing.

For example - why show them the records from the doctor that said it couldn't be MS because there were no lesions (mistaken information #1) on the MRI (Mistake #2 - not knowing that a .2Tesla MRI machine is really not good enough to detect all but the most obvious lesions).  

Oh well - I'll cross that bridge sometime before my appt. I guess I have to show them the records but maybe I can keep them and talk to him for awhile first before I hand them over.

Thanks for the cheering section!

Mee

[HVAC]

Hey they may have had a cancellation.

[Sparkysarah]

Just to wish you all the best for your forthcoming appointment....I am glad for you that you hae not got to wait too long - geez you have waited long enough without making enough progress in getting a diagnosis.  I really hope that you get some answers this time so keep us posted.

Best wishes

Sarah

[sllowe]

Yay!

No negatives for you, Meeshka! Glad your appt. is soon!
You have all your records in order? Report results?

-Shell

[Meeshkabear]

You know - that's one thing that makes me a little nervous about this new doc - the fact that they could get a new patient in so quickly. There I go being negative again! I'm going to try and think good thoughts. If this doesn't work out, there is at least one more that I can try to see :-)

[HVAC]

There is unfortunately a great shortage of MS Specialists in the country. That is what I and 352 other MS Advocates from every State were up on Capitol Hill talking about this week with Lawmakers. I hope this Doctor helps. NC has less than a dozen MS Specialists in the State. We have Duke and UNC where I live and maybe 4 at the moment for over half the State.

Sounds like you are in good shape I will not see my Doctor at Duke until August this year if I get to see him at all and I am an established patient. Most likely I will see his PA. I saw him last August.

Alex

[Meeshkabear]

By the way - thanks for the mscare link. I found a doctor that specializes in MS and have an appt on the 22nd! Yeah - I just hope this one has a clue :-) We'll see...I told you I was jaded! The only thing that keeps my hope up is watching "Mystery Diagnosis" - all of those people were in the same boat and they eventually found some dr. who knew what was going on with them...so hope springs eternal!

[sllowe]

Hi MeeshkaB,

You still have your drive - that's nice to see!

Ok, well you already know that the lower the strength of the machine the greater the chance of a no show of those lesions.

MS is a clinical diagnosis. So, there is something missing to the puzzle in regard to why you've not been dx'd yet.

What you can do is check out mscare.org and look for an MS specialist in TN on the recommendation of the neurologists, or you can use google and search in quotes to minimize the amount of hits all your major hospitals and the check the bios of the neuros and see if anyone specializes in MS or other demyelinating disease.

Nice to meet you, MeeshkaB and hope to help!
-Shell