Evaluation

My neurologist wanted me to go to Mayo to get evaluated because he thinks it's not normal PD because of my progression. Just found out Mayo is out of network for us (retired Tricare). Has anyone been evaluated at the University of Colorado or the University of Nebraska. My insurance suggested those places. I know my neurologist wanted Mayo for the multi-day, multi-disciplinary evaluation because I've already been seen by 2 MDS in Minneapolis, one who was at the Struthers Parkinson's center (who agreed with my neuro). The only place I can think of that's like Mayo is Duke Medical in NC. They are in network so I would love any comments about there also. Thank you everyone!

[Juliegrace]

Look into if either University is involved in PD research. They are more likely to have multiple movement disorder specialists.

[RS313]

Are you progressing fast or too slow?

[Hidden in reply to RS313]

Too fast. I've never had a tremor and I can take up to 1500mg day sinemet and I still can't wear normal shoes (or even socks) because of the dystonia in both feet.

[sharoncrayn]

I can think of probably 5-10 PD medical centers who are "multi-disciplinary" from

Boston to San Francisco. That is not the critical issue IMO because it is highly likely they will agree with your previous consultations. What then?

[Hidden in reply to sharoncrayn]

No Struthers agreed that it's not normal idiopathic PD and that I should be evaluated more to find out what it is

[ktbate]

Are you talking about MSA? or Parkinsonism? I would definitely get checked out. I would pick Duke. Good luck!

[Hidden in reply to ktbate]

Parkinsonism is what my records say now. They used to say Parkinson's Disease. MSA is the most likely candidate concidering the other issues I have developed over the last 6 months.

[WC309]

Hi

.....just my recent experience...

Recently I had +/- steady cramping in left foot. Dystonia....?

Was on 2 tabs of 25-100 Sinemet three times a day.

My neurologist and MDS Dr lowered dose to 1.5 tabs three times a day.

This has reduced cramping.....so far...

Maybe review if you could lower your dose to reduce Dystonia.

Also heat, massage and exercise helped me.

Best wishes.

[Hidden in reply to WC309]

I wish that would work. But I had the foot dystonia before I was ever on sinemet. The sinemet held helps it some but not a lot.

[WC309]

Also...I am advancing rather quickly and have never had a tremor.

[sharoncrayn]

Go to the Parkinson Foundation web site. Search under "Centers of Excellence". You will find about 20 or so centers. I suggest selecting 1-2 (2nd opinion is always best to get) which are within reasonable travel time from your home and which will, importantly, accept your insurance. Regardless, the key is your lead doctor at one of these centers. Go for the very best you can find. Your neurologist, if he is any good, should be able to help you with this selection. If not, you will have to do the research yourself. IOW, if it seems like PWP (and not PD) you want a doctor (and team) who is experienced in treating PWP, not necessarily PD. Big difference.

[Icequeen10]

I'm sure they will refer you out of network. I take magnesium for the neuropathy, pain, cramping and movement in my feet and lower legs. Works well for me.. I am currently taking 3 to 4 400 mg capsules a day.

[gilgamesh]

Mayo is really top. Two questions:

-Did you find out how much it would cost out of pocket?

-Is there the possibility of a modified scheme where you could have some of your lab work or diagnostic imaging done with an in network provider and pay for the neurologists consultations at Mayo separately?

Duke may not be a bad second choice but I might try one of these options first.

[sharoncrayn]

Mayo and Hopkins are the gold standards for mega medical centers, but UF (University of Florida) has an up and coming PD center of excellence. All hinges on Dr. Malaty....................................

The University of Florida Health PF Center of Excellence is under the leadership of Irene Malaty, M.D. and it underwent another successful peer-reviewed site visit and re-certification in 2010. The independent reviewers and PF staff cited UF as one of the leading centers in the COE network, and commented that the UF Center was among one of the truly interdisciplinary clinical-research enterprises in the entire network. UF has been cited as, “a place for other centers to visit, to see how well care and research can be delivered.”

Largely due to the support of the PF and the designation as a COE, along with other foundation, federal, pharmaceutical, and philanthropic support, we have been able to obtain substantial faculty support from the University of Florida including the McKnight Brain Institute, the Center for Translational Research in Neurodegenerative Disease, the Departments of Neurology, Neurosurgery, Psychiatry, Clinical Health and Psychology, Communication Sciences and Disorders, Neuroscience, Biomedical Engineering, Epidemiology and Health Policy Research, Applied Physiology and Kinesiology, Social Work, Biomedical Engineering, Rehabilitiation Medicine, Physical Therapy, and Occupational Therapy. Each of these departments has made substantial commitments of personnel and resources to ensure the COE charter is fully supported and remains comprehensive.