What would you do?

[mom2ellabella]

Hello - thank you for taking time to read my question.  I am a 34 mom of two little ones who has had a series of health crises over the past year (or two).  I have been diagnosed with Psoriatic Arthritis and Spondlytits (sp?) which is an autoimmune arthritis disease kinda like Rheumatoid Arthritis, my hands are all mangled in pain as are my wrists, ankles, toes, and my spine is growing bony spurs that are causing muscle spasms and neuropathy in my legs. Like all systemic autoimmune diseases I am really fatigued and then to add insult to injury I also get covered in sores (the psorasis part of the deal), am loosing my hair, and my eyes have dried out.  Sigh. Currently I am on methotrexate but its not cutting it and I need to look to the better, newer drugs (Enbrel, Humria, etc)

The problem - Enbrel, Humeria et al,  would make any undiagnosed demylination disease worse and is counterindicated. This is a problem because I have had some weird episodes in the past that *could* mean I have something MS-like going on.... or I am just crazy... or maybe I am having optical migranes... who knows. This time last year, I was reeling around like a drunken sailor, with a kind of vertigo where things didn't spin, but rocked. I was unable to stand without holding on to something. My hands shook when I reached them out, I was seeing double at random times... and then one day around three months after all that started, it suddenly stopped. Poof! It all disappeared.  I saw a neurologist and he did an MRI - it came back clean, and he never called me back after that. By that time I was seeing a rheumatologist and focusing on diagnosing my PsA so I just let it go.  

I had a really bad experience with that neurologist - it soured me on neurologists.  I have no burning desire to ever set foot in a neurologist office again, but here I am.  My rheumatologist referred me to some "nice" neurologists who wouldn't be mean, but I wonder if I should go all out and travel to Houston (I am in Austin) to the MS clinic there to get evaluated.  Austin doesn't have the best MRI machines or a big clinic that specializes in MS like Houston does.  

Would that be overkill? What would you do? Would you stay here and go the nice neurologist the rheumy referred or travel to a big center?  Does anyone know anything about the Maxine Mesinger MS clinic in Houston?  Does it have a good rep? Thanks for any information you can pass on!  Its a lot to think about.

[mom2ellabella]

Thank you so much for all the comments - its so helpful to get another opinion.

The Houston clinic is in the mscare.org database as a member - when you do the search it comes up as Baylor Medical Multiple Sclerosis Center and then when you click on it, it says "Maxine Mesinger" blah, blah, blah... so its the same place. I wasn't aware of that site though - its very helpful. Thanks for the recommendation.

The thing that keeps me from pursing the Round Rock clinic is the lack of a 3T machine here in Central Texas.  San Antonio has one but when I looked at the MS clinic listed for San Antonio, it was a VA clinic, and I don't think I can go to that. ???

I was surprised to see a center in Dallas - I hadn't thought to go there.  I have a lot of family in Dallas, so it might be an easier trip to figure out logistically. One of the doctors listed said she specialized in autoimmune neurological diseases, so she might be a good fit for me and my various autoimmune maladies.  

The Dallas one is UT Southwestern Medical Center of Dallas MS Center... has anyone ever been there?  Would it be worth a special trip?  I wonder if one is more highly recommended than the other.

Its hard with this doctor business - you never know if you are going to the guy who scraped through med school with C's or not.  

Thank you again for the suggestions.  

[Ojibajo]

If you are lucky enough to have an MS clinic nearby and that is an option for you, I would go with that option. You are already dealing with so many things I would try to go with whatever would be most likely to hook you up with the best specialists to give you some quality of life back.

[msisbs]

Hi, Im do not know a huge amount about the Austin MS care but I am aware of an MS clinic in Round Rock. Which is just up I35 from you, much closer than Houston. We live in the same region so I have looked into it some. Maybe check in with them? And of course the local MS Society Chapter has an office in Austin that could likely help with knowing good clinics and neurologists.

[rendean]

Hi Mom,

I don't believe we've met so hello and welcome. I don't not know anything about the MS clinic in Houston but if the "nice" neurologists aren't experienced in dealing with MS, especially one with other co-existing disease, then I would head to the big center.

Usually you can go on line and get a good CV of a doctor by go to your states Board of Medical Examiners or Texas Medical Board, I'm not sure what yours is called. They usually list credentials and residencies on these if you enter the doc's name.

My thought is the bigger the center the better the chance of them having dealt with a similar situation. Check out the credentials of the doctors of both practices and see what your best bet might be.

I'm not sure I gave you a clear-cut answer but I think some research into both practices should help with making a decision.

I wish you luck and hope you do find a nice neuro no matter where you go. but, be forewarned , there are  a lot of "not nice" neuros.

Ren

[Lulu54]

If you have to pick one over the other, I would definitely choose an MS Center, even though I don't know a thing about the Mesinger clinic.  They are not a member of the Consortium of MS Centers, according to their website mscare.org

Baylor university and the University of Texas both are members of the MS consortium.


There is a member group right in San Antonio which would be quite a bit closer.

You can search their listings at\

mscare.org
then click on membership on the left side and select "center directory"

good luck and come back if you have more questions,
Lulu