Hereditary Spastic Paraperesis Doctors?

[Searock19]

Does anyone know of any American doctors who specialize in hereditary spastic paraperesis?
Thank you,

[SCI-Nurse]

Most neurologists are familiar with making the diagnosis, and most physiatrists would be experienced in management and care. I don't know anyone who restricts their care to only this diagnosis. You can find the names of physicians who publish a lot of articles (do a literature search) to find those who may be more expert in this condition.

(KLD)

[jessie.gray]

I have never seen a doctor who just deals with this defect. I went to the University of WA Medical Center, where I had tons of tests done several years back that confirmed the diagnosis of hereditary spastic paraparesis. I then went back to my current neurologist, who is in charge of the care of that disorder.

You might want to write to the University of WA Medical Center and talk to them about this. They have very good neurologists and neurosuregons up there that might be able to help you out a great deal.

Jessie
(hereditary spastic paraparesis and L-4 SCI)

[Brooke]

I have HSP, too. I didn't know where to go either, so I just picked a random neurologist in town. Sure enough, he didn't know about HSP, but he was able to refer me to another neurologist who was familiar with the disease. So, that plan worked for me.

I'm the first case of HSP that my neurologist has ever seen, but at least he knew what the disease was! :-)

[willingtocope]

Dr. John Fink
Associate Professor, Dept of Neurology
Director, Neurogentic Disorders Clinci
University of Michigan, Ann Aebor

www.med.umich.edu/hsp/

[Brooke]

Thanks, but I'm not likely to drive all the way across the country to see a doctor to get diagnosed again with a non-treatable disease. If the disease had treatments, that would be one thing, but there's nothing anyone can do. And I already know I have it, so there's nothing to be gained.

I know it was for Searock, though. I'm sure that person will use the info. :-) Thanks!

[willingtocope]

After visiting 6 different nerve guys over the last 4 years, I've found that they tend to diagnosis according to their speciality or the last thing they read in the journals. I had a Neuro-Muscular specialist at the Univ Of Iowa tell me I had HSP. Since some of the symptoms didn't fit what "Dr. Internet" described, I discussed with Dr. Larry Elmer at the Medical University of Ohio, and he suggested Dr. Fink.

On their advice, I went to the Mayo for their opinion. They decided it was Primary Progressive Multiple Sclerosiss.

My point is, you really need to see a range of doctors before you pick the disease you want to be labeled with.

(Actually, I'm not real happy with the PPMS diagnosis either. Of the 4 or 5 "indicators" for MS, the only one they've based this on is some areas of what appears to be sclerosis (without acuity) on my spine).

[Brooke]

Oh, good, for me, since my 2 neuros specialized in Alzheimers and Stiff Man Syndrome, respectively.

[willingtocope]

Honestly, its been awhile since I've read Dr. Fink's site, but I beleive he discusses HSP often being mistaken for Stiff man...or vice versa.

[Brooke]

True. And my dr. was already familiar with stiff man, so he knew how to test for it.

We tested through Athena diagnostics for the amphiphysin antibody. It was negative, so that rules out Stiff Man. :-)

[Tokahfang]

The motor neuron clinic at Columbia Presbyterian is supposed to be good for HSP. My doctor is a subspecialist in neuromuscular and still wants me to consult with them. They are trying to decide if I have HSP on crack or a new genetic cause for PLS.

[Brooke]

Can I ask something? And I mean this with all sweetness and sincerity...

What would a clinic that's good with HSP be good for? Is it just diagnosing?

I have HSP too, and my doctor just diagnosed me and sent me home. Now they want me to come in for a 6 month follow up, and I don't see why I should go.

I bought myself a wheelchair, and I've had a lot of adapting to do, but that's not something he can help with.

I mean, are there treatments, or anything at all they can do to help? What, other than diagnosing, would a person travel to an HSP clinic for?

Thanks for the help and information. :-)

[Brooke]

Here's what I mean:

SCI Nurse wrote (earlier on this thread):

"Most neurologists are familiar with making the diagnosis, and most physiatrists would be experienced in management and care."

I did the neurologist part. Was I then supposed to find a physiatrist? I've never even heard of them.

And exactly what management and care is there?

My neurologist gave me neurotonin for the spasms. I just figured that was all they could do.

Is there more? Should I go find a physiatrist? Would that help get me out of this wheelchair?

[wheeliecoach]

When I was diagnosed with PLS, I started seeing a physiatrist. He helps with medication, chair perscriptions, braces, etc. He also keeps track of my progressions, and finds other meds that may help. They (at least mine) are more personable and can tell if I am in a progression sometimes before I do.

[SCI-Nurse]

Just because someone has a progressive disease does not mean that nothing can be done to manage and minimize impairments. This tends to be the mindset of neurologists who have no rehabilitation training.

A physiatrist is a specialist in physical medicine and rehabilitation. They are expert in knowing how therapy (PT, OT, etc.) may or may not help with a particular deficit, and also in prescribing these interventions, as well as helping with management of issues such as spasticity (which can change), neuropathic pain, etc. Some do primary care, others will see you perhaps annually for an evaluation of your disability as mentioned above.

You can find a physiatrist in your area here:

http://www.e-aapmr.org/imis/imisonli...dphys/find.cfm

(KLD)