Neurologist that specialize in MS

[lilred78]

I had a doctor's appointment today with my PCP who said that he thinks that my many symptoms are a result of MS. I recently had a MRI of my back and found that I had transverse myelitis, and the symptoms (pain and numbness) that I'm having from that are not the first time I've had them, in fact its the 3rd. The problem is that the other 2 times the doctors did blood work and XRays. The symptoms eventually went away and nothing came of it. Anyway he wants me to see a neurologist for diagnosis. So, I got a referal to a local neurologist, but I don't know if I should see one that specialize in MS, especially on the first visit. I looked on line and because I live in a very rural area it is a little over an hour to get to a Neurologist that specializes in MS. I really don't know what to expect in the first visit. Is it a matter of ordering more tests and asking some questions, or will he tell me in the visit that I have MS and start some kind of medication. I don't know anyone that has MS, but I know tons of people who knows people who have it... and the 1 degree of seperation isn't helpful for me. Any help/suggestions that I can get would be greatly appreciated and helpful.

Thanks!

[Heather3418]

I have been diagnosed for 12 years and have NEVER seen an "MS Specialist yet."  A all around Neuro, if he has any sense, should be able to handle all aspects of any neurological disorder, unless it's to a NeuroSurgeon.

As I have in other posts, my GP did more for me than any Neurologist every did.  I was one of the lucky ones, I guess.

Heather (the "other" redhead (blonde/red)  Roots are still red, even at age 54.  Hmmmmm, where's the white hair...could it be Clairol number 8G?

[lilred78]

Thank you so much for all of your advice. I have an appointment next Thursday (they had a cancellation). I decided to go with a non-MS specialist. I'm going to take metabolicwreck's advice on this one. I figure that if this neurologist says that I have MS then I'll look at MS specialists, if he says he doesn't have a clue what I have (which won't be the first time)... well I'll cross that bridge when I come to it. I've looked at the many different symptoms of MS and I have a good number of them, and while I know that there are other things that can mirror MS none of the symptoms fit as well. I have had MRIs of my head in the past and a spinal tap... all which came back normal.... though my last MRI of my head (with contrast) did have a "shadow" on it, but it was thought to be nothing. I don't know what a lesson looks like on a MRI vs a shadow, but I now wonder if this could have been diagnosed a year or so ago. Oh well...

Thank all of you again... I really appreciate the advice. I'm sure that I'll be back often. I'll let everyone know how my appointment next Thursday goes.

And Heather... Yup there's one more firey red head in the group.... WATCH OUT!

[ninas]

I worked for a really good neurologist for several years and although I'm not a patient, I have found you because my daughter is now showing some of the symptoms of MS. I really don't think any of the doctors in our group felt differently about male vs. female patients. Women were more likely to be compliant than men actually. It is better to have a list of questions and someone to help you write down or remember the information since there is lots said in a short amount of time and it can be confusing. I couldn't resist the input and hate to think ladies will be afraid to go. Most neurologists are also psychiatrists by the way. It makes them better diagnosticians. Best of luck to all of you.

[Heather3418]

I LOVE your sense of humor.  We have some real characters on this forum, as you will soon see and they make being here more tolerable, just by their humor.  I will not name names....I have to protect their identity as complete off the wall "hot broads" or "spazes," just to name a few of our nicknames around here.

Red, your humor will get you through some of the toughest times and now that i see you have it, let us other "off the wall," girls and boys, join you.  You will see that there are times when we are totally serious and times when we are totally on task...to help others.

Amy makes a good point in her post...."don't go into your appointment naming any specific diseases,"  See what he says first....Amy you are right on, girlfriend.

Please keep us posted.  LilRed, would you by chance have red hair?  If you do, welcome to the forum, from ANOTHER red head....

Heather

[metabolicwreck]

Yes, definitely take SOMEONE with you.  It's never a bad idea, but with something as major as this, it's good to have another set of ears to hear what's being said.  I would also pick up a copy of your MRI; it might not be the exact area he needs to see, but then again, it might.

I'm not sure that I agree with starting out with an MS specialist; he might tend to think everything that could fit might be MS.  ( You know what they say, if the only tool you have is a hammer, everything looks like a nail)  My initial diagnosis was made with a general neurologist, after she did quite a bit of testing (MRI, spinal tap, evoked potential).  Once the diagnosis was made, then she arranged for me to see a specialist.

Anyway, just my nickle's worth...

The Wreck

[BondyinOz]

Well I just had my first neuro appointment on Monday, after my Dr had (finally) mentioned MS might be the cause of all my problems. I dont' want to bring you down but it wasn't what I had expected, even though I tried to have no expectations. He talked to me about my symptoms, got me to do the usual walking thing, then pretty much told me that there was no way I had MS. Right. hehe

I am being sent for an MRI of the brain, which is great, but he's pretty much said I should expect it to be clear. Your neuro will probably sent you for tests - please expect them not to give you a diagnosis straight away.

Let us know what happens.

Mel :-)

[Amyloo]

That is very funny.  So  I say, then take mom.  (dressed as herself.)  I would definately see the dr that knows the MS stuff, but avoid looking like you know too much about the disease.  Tell him your story without mentioning any specific diseases and see what he says.  God bless you.  Amy

[lilred78]

I don't have a man in my life that is close enough for me to ask to come with me to my appointment. But if its worth me going to a larger city to see a neurologist then that's what I'll do. I know that MS is hard to diagnos, and it took a long time to get my PCP to even mention MS, let alone admit that my symptoms could be caused by MS, so I want to make sure that I do it right and see someone that is going to help.

I am concerned about this man thing though. I could have my mom dress up like a man and come with me, but unless she can pull off the deep voice and hide the boobs I don't think that it'll work, and Mom might end up with a referal for a different kind of head doctor.

Thank you so much for the ideas and support. It means a lot.

[Heather3418]

I take my sweetie with me, everytime I go.  If my honey thinks the Neuro isn't listening to my complaints, he always speaks up.  My honey is a life-saver.  I don't know how I would go through all of this without him.  I thank God for bringing this man into my life, everyday.

So Jon brings up a good point.  Sometimes just the presence of another man in the room, break down the barrier that some male doctor's put up, when they want to "dismiss" a woman's symptoms, as just acts of female rantings.

We are with you every step of the way.

Heather

[JonM]

Call your local chapter of the National MS Society.  Here is the link to their web directory:

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_FIND_homepage

Its worth an hour or longer travel to see someone who has a large practice.  A Word of advice, if you're a lady bring your husband, father, son, boyfriend, a man.  Many doctors, particularly male doctors will easily dismiss a woman's seemingly trival questions, where as they won't with a man or even with a man in the room.

Jon