Friends have suggested visiting a university hospital to receive a second opinion or at the very least to verify the local doctor's regimen. I live in Southwest Fl, so I'm thinking University of Fl ,Gainesville or Mayo Clinic, Jacksonville. Does anyone have any suggestions. Thank you

By all means if you are clear about What is it you really want to know?
Are you meaning a second opinion about your prescribed sinemet 100/25 day?
As you will soon see each of us are on different regimes, some of this is PwP driven and some reflects the differing advice and treatment approches of each doctor we see. You are quite likely to have different treatment prescribed but this doesnt mean your current treatment is wrong, just different.

I guess I'm clear that I'm not clear. Yes, I get that "if you've seen one case of Parkinson's, you've seen one case of Parkinson's" and that treatment can and will vary, all as you so effectively present. But I'm an inquisitive sort, especially when it come to my health and, would like to get as much info as possible so that I can make an objective decision. And I'm thinking these university affiliated hospitals and/or a Mayo Clinic with many disciplines under one roof qualify as a good starting point. My current neurologist too, doesn't give me a warm and fuzzy feeling. Absolutely love New Zealand BTW.

We have gone to neuros in private practice as well as those in highly regarded research facilities. We have had great neuros in both, and lousy neuros in both. That doesn't help you, except that I will add that docs in teaching/research facilities do seem to be more up to date with PD research, and so are able to converse with you (and don't get mad if you bring an article or two or want to actually have a conversation about an experimental approach).

We actually had one doc (not in a teaching/research facility) tell me that we would have to pay him to "review" the research materials we brought to the appointment, and this was PD materials he should have already known about! I get that docs are busy people, but when the PATIENT is doing research and learning about new therapies the DOC should know about already, well, I think there is a problem there. It was all I could do to keep from telling him "how about you pay us for all the PD research we do and bring you up to date on, how about that?" But I didn't.

I have also heard that staff (nurses, PAs, etc.) in research/teaching facilities are more compassionate than those in private practice, and I would say that in our limited experience, that is true. Bedside manner matters

i got a 2nd opinion immediately after my diagnosis, i didn't want parkinson's. i asked the MDS how many patients he had misdiagnosed showing similar symptoms to mine and he said out of about 1000 patients, maybe 5%, at least that's what i remember. he encouraged me to get a 2nd opinion when i brought it up. the 2nd MDS said she could tell i had pd when she first saw me which was amazing to me because my symptoms were very mild.

sounds like you are past the diagnosis phase and want better symptom treatment. if adding a 3rd dose of sinemet isn't helping enough after a week i'd go back to your neuro and ask for some more treatment ideas, maybe increasing your doseage to 1.5 tablets temporarily to see if that helps. what's the worst that could happen bugging your neuro to put on this thinking cap? if you stay with him/her and you have to adjust meds, ask specifically what the next step would be if the current change wasn't effective.

which generic sinemet you take can make a difference, at least with me. have you changed generics by chance? added other drugs/supplements besides the prednisone?

anyway, it's not just the MDS you see that's important but the whole organization supporting them, the ideal situation would be to have clinician, researchers, physical therapists, social workers working as a team. assuming you can afford them. plus you have maybe a better chance of getting into a clinical trial.

http://movementdisorders.ufhealth.or...ael-s-okun-md/

[QUOTE=soccertese;1100691]i got a 2nd opinion immediately after my diagnosis, i didn't want parkinson's. i asked the MDS how many patients he had misdiagnosed showing similar symptoms to mine and he said out of about 1000 patients, maybe 5%, at least that's what i remember. he encouraged me to get a 2nd opinion when i brought it up. the 2nd MDS said she could tell i had pd when she first saw me which was amazing to me because my symptoms were very mild.

sounds like you are past the diagnosis phase and want better symptom treatment. if adding a 3rd dose of sinemet isn't helping enough after a week i'd go back to your neuro and ask for some more treatment ideas, maybe increasing your doseage to 1.5 tablets temporarily to see if that helps. what's the worst that could happen bugging your neuro to put on this thinking cap? if you stay with him/her and you have to adjust meds, ask specifically what the next step would be if the current change wasn't effective.

which generic sinemet you take can make a difference, at least with me. have you changed generics by chance? added other drugs/supplements besides the prednisone?

anyway, it's not just the MDS you see that's important but the whole organization supporting them, the ideal situation would be to have clinician, researchers, physical therapists, social workers working as a team. assuming you can afford them. plus you have maybe a better chance of getting into a clinical trial.



Called UF in Gainsville, Fl and got an appointment for 12/15. There are 12 doctors in the group, each one reviewing 4 patients a day. There are 4 different areas I would be visiting(in the same building) starting at 10am and finishing at 5pm. This schedule is fluid and could be longer but generally, I'm told, pretty much holds true. Also, I am on a cancellation basis with all 12 doctors so that if something comes up sooner and, I can accommodate it, I can get in sooner.