What is your neuro's specialty?

[wendya432]

Basically, what kind of neurologist do you see?

Currently the neuro I"m seeing is a migraine specialist, in the general neurology clinic. Which is ok for my cluster headaches, he's the one that was able to diagnose them and is working around with my meds to try to get them under control.

But, when it comes to the rest of me, like my progressive UMN problems. He just seems completely stumped right now.

I'm thinking maybe I should see someone that has more experience with this kind of thing. But not sure what kind of neuro that falls under?

I go to a university hospital, and I know they have an ALS clinic, but not sure if they would see me since I don't have ALS and don't have an actual PLS diagnosis. I guess it can't hurt to call and ask?

So who do you see? a neuromuscular specialist? an als specialist? who treats people with UMN disease?

 

[dalvin]

at vcu/mcv here in Richmond, they consider pls to be a form of als. so the als clinic sees the pls patients. it can still be confusing though. they tell me pls but all the signs say asl. already using a bopap, most of the day spent in a wheel chair, they have talked about venting, and next month have to get a peg. not saying it doesnt happen but i havent read on here of any other pls'ers having to get all that done in just a short period of time

 

[AfraidButNotAlone]

I see Dr. Glass and Dr. Fournier at Emory University. They are ALS specialists (I think).

My neuro overseas is, self admittedly, NOT an ALS specialist.

 

[IhavePLS]

Hi Wendy,

In my most humble opinion, it is best to see a neuromuscular specialist -- one with EXTENSIVE experience -- and not a general neurologist. I say this because these are more highly specialized neurologists who have usually seen everything. While many general neuros are quite good, it is my bias that most (not all, but many) "small town" docs simply don't see everything in their practices, and some haven't had the kind of neurology residencies that "big city" and university programs have had. This is my bias, of course. But it is, I believe, a key reason that the neuro I see now is reticent to diagnose me with PLS - when a neuromuscular specialist had NO reticence in doing so (and this after a single visit)! Again, others may disagree - and there are always exceptions to everything - but it simply makes sense that the bigger centers (cities and universities) are statistically more likely to have seen PLS in their practices.

Look for a doc who works in a "Neuromuscular" disease specialty - not migraine, not epilepsy. Try this: Google "neuromuscular disease specialists" AND your location. Once you find such a specialist, ask them very specifically if they have had prior experience treating PLS (or upper motor neuron disease).

I hope this helps.

Mike

 

[billbell52]

I went to numerous doctors and several neuros before I was diagnosed. A report had the neuros listed as the top ones in Dallas. It was only when I went to the MDA/ALS clinic at UT Southwestern that I felt like they could diagnose my problem. So I would recommend a clinic that deals with ALS. Even at that clinic they only have a handful of patients and that includes North Texas, Arkansas and some of Oklahoma. I am an MDA patient.

 

[Clearwater AL]

Mike is right on... I believe (my opinion) being that ALS is rare and PLS is a rare form of ALS, chances are many neurologists have not had a patient with either. Where they go from there (referral to someone else) is hope on your part. If you see a qualified neurologist in ALS/PLS and his/her diagnosis is PLS have him/her send a written report to your local neurologist. Who knows what motivates some neurologists to be reticent. (Had to look that word up Mike )

PS I am one who wouldn't be one bit surprised that my Neuro Doc reads this Forum. "Merry Christmas Doc!"

 

[IhavePLS]

Clearwater AL, I must say that I wish I was seeing YOUR neurologist! I'm pretty certain (99.9% +/- 0.1%) that my neuro is NOT reading these forums...although I really wish he would read them!

Of course, I'd be wise to stop casting aspersions in the event he DOES find them (or has found them for that matter)!

Mike

 

[Clearwater AL]

In Central North Carolina, at Duke University, is one of the most renown ALS Neurologists. He is foremost contributor to (A.L.S. U n ta n g l e d) Many Neurologists in this area are aware of him and his work on ALS. Many have also graduated from Duke University. They do fund raisers for ALS. Yes, many neurologists may scoff these forums off but if they have any patients with ALS/PLS I'd think they too are aware of these Forums just from Googling ALS looking for info beyond their own (maybe) narrow awareness. I sure wouldn't want a Neuro Doc who would think it is below him/her to search for more information on a very rare disease. They are also aware their patients now are Internet active. In fact, some have told their patients to stay off the Internet and stop Dr. Google. Kinda gives me a hint they have looked too. I have no way to be sure my Neuro Doc reads this Forum but he does have "free time" and a computer. And... if (big if) he does, again, "Merry Christmas Doc!"

PS I'm sure some neurologists have heard from some patients... "Well, I've read on one of the ALS Forums..."
Curiosity?

 

[Clearwater AL]

Posted above.

 

[vickim]

Mine is a neuromuscular specialist at a university hospit al MDA clinic. He is one of those docs who say stay off the net. Sorry doc, I have learned a lot from here and a few other sites.

 

[Bad Balance]

Go to the clinic!
You do need to see someone experienced in NMD ....some of these guys are so experienced that they can almost diagnose just by observing you for a few minutes. Also, you will have other specialists available

 

[IhavePLS]

Go to the clinic!
You do need to see someone experienced in NMD ....some of these guys are so experienced that they can almost diagnose just by observing you for a few minutes. Also, you will have other specialists available

Jerry, spot on -- as always. This is exactly what I was trying to say above, but didn't (or, should I say, couldn't)! One's choice of words means everything.

Mike

 

[IhavePLS]

Wendy and all,

Wanted to pass along this listing of PLS/HSP specialists (from the SPF Foundation website). The neurologist I saw in late July reconfirmed my diagnosis of PLS (as stated elsewhere, the "small town" neurologist I see on routine basis will not -- perhaps he even cannot -- do so):

http://www.sp-foundation.org/get-assistance/physician-directory/

Hope this helps!

Mike

 

[kevinw]

This is some of my neuro's bio I guess...

Dr. Terry Heiman-Patterson is section chief of neuromuscular disorders at Drexel University College of Medicine. She is also medical director of the MDA/ALS Center of Hope at Drexel University College of Medicine, and co-founder and president of the board of the ALS Hope Foundation.

Dr. Heiman-Patterson is committed to amyotrophic lateral sclerosis research and has received over 12 clinical and basic research grants for ALS. She has been funded by the ALS Association for projects that examine the role of glutamate in the transgenic mouse model of ALS. She also has maintained an active clinical trials program and has been the principal investigator on multiple clinical trials including a Phase III CNTF trial, a previous Phase III BDNF trial, the Sanofi Trials of SR76544a, and a Phase II BDNF trial along with many expanded access and open label programs.

Beyond drug trials, Dr. Heiman-Patterson has worked on modalities that are now available and can improve survival and quality of life in patients including studies of noninvasive ventilators (bipap). She has published over 40 papers, abstracts, and chapters on ALS and related motor neuron disorders.