Scary New Sympton Continued

[Boots1]

I got the results from my eeg this morning. It appears that all is normal. They had me on 10 mg's of Valium 3 times a day along with 1 mg of azilect,3 doses carbidopa 25mg/levodopa 100 mg, requip xl 4 mg and 1 carbidopa 50/levodopa 200 cr at bedtime. They seem to think the blackouts were from the valilum and now want to cut them to 5 mg's dailey. I do not know what to think about this, since I have been taking the valium for the last 3 years and never has a problem before now. My neurologist is not a specialist in PD and I seem to be his only PD patient. I have noticed that many of you do see specialist. Can you tell me how I go about finding one???

[Jerebet]

1-800-4PD-INFO (473-4636) is an extension of the National Parkinson Foundation’s well established education and outreach initiatives, which already include: Allied Team Training for Parkinson, a premier web site for Parkinson’s-related information, NPF publications, conferences, webinars, and the National Parkinson Care Network.

People with Parkinson’s disease, their families, friends and health care providers are invited to call to receive current and up-to-date information about Parkinson’s disease generally, emotional support, and referrals to health professionals and community resources. A wide variety of helpful publications are also available for order.

Parkinson’s disease information specialists can search the National Parkinson Foundation database for NPF Centers of Excellence, health professionals with training in Parkinson’s disease, National Parkinson Foundation chapters, and support groups in your area.

[Susie01 in reply to Jerebet]

Jerebet,

I would like to thank you for all of the helpful information you share here!

[Moderator_1 in reply to Jerebet]

Jerebet

Thankyou for this useful information.

[Paul_Dineen]

Boots,

> requip xl 4 mg and 1 carbidopa 50/levodopa 200 cr at bedtime.

Requip XL at bedtime only? Not in the mornings only? I'm no Dr, but based on my experience as a patient with a PD specialist (next paragraph), I would question taking Requip in the PM.

I'm seeing my 3rd neurologist now. He is a specialist in PD -- unlike the first 2 neurologists, he sees only PD patients. He appears to me to be very knowledgeable and good at treating PD. He started me on Requip XL 2 visits ago.

At the last visit, he was dismayed that I had been taking the Requip at night with my other non-PD meds. He said that the experience to that point with taking Requip had been useless because I was taking them so late in the day. Since they're good at giving clear, written instructions at the end of each visit, I'm sure that I had overlooked their instructions to take all the Requip in the AM instead. (I'm up to 14mg, and will go to 16mg a week from now and will stay at that until the next appt).

.

> My neurologist is not a specialist in PD [...] many of you do see specialist. Can you tell me how I go about finding one???

Jerebet very likely answered that better than I could. (I have no experience with that organization she gave the number of.)

The answer for me: referrals from doctors.

My first 2 neurologists were in my town (pop ~130,000). The 1st Dr didn't give a diagnosis after ~1 yr of visits. I don't blame him because my symptoms kept changing while I was seeing him.

Nevertheless, family/friends pressured me to switch from the 1st one because I still had no diagnosis, so I switched to another neuro Dr in town (recommendation from my general practitioner Dr). The 2nd neurologist was convinced at the 1st visit that it was PD. He tried several meds (individually, IIRC), but with unsatisfactory improvement. So, he referred me to a PD specialist (the one described above) in the Denver metro area -- so, that's a ~60 mile drive each way (with real city traffic). With him, I'm seeing improvement as we try different drugs and dosages. Right now I'm on 3 PD meds + 1 just to treat a side-effect from 1 of those 3.

So, my question based on that is, do you live within a reasonable distance of a large metro area that might be more likely have someone who's more of a specialist in PD? Hopefully, the people at the number Jerebet have a good answer to that for your location. I don't imagine that a one-time, long-distance visit with a specialist would work well for treatment, since treatment likely involves at least several visits and adjustments.

Paul

[Boots1]

Hi Paul.....the reason they gave me for taking the requip xl at bedtime was to help me keep medication in my body until I take my morning meds.