Appointment with MDS on 9-20
 

I'm sure he will put me on meds. I'd like to be put on generic sinemet because we could lose our health insurance. If he doesn't agree should I insist?

Marciaj, I have been taking generic carbidopa/levodopa manufactured by Teva since beginning in 2001. It has always been reliable for me.

teva works great for me.

Hi Marcia, my friend!

Yes, insist!

If you have a choice, ask for Mylan's generic or Teva's. They both work about the same, except there is an ingredient in the Teva generic I'm allergic to. But, I doubt you will be.

Hope it works well for you!
Good luck with your appointment!

Tonya

Not Pd
 

I only saw a neuro once in 2006 and he diagnosed PD but it wasn't advanced very much so didn't start me on meds. I got worse in 5 years and went to see a MDS here in another state and he says it's either corticobasal degeneration or Wilson's disease. He's running a blood test to rule out Wilson's and a MRI to rule out small strokes. I'm shocked. Not expecting that. I'm on the wrong message board! Sorry. Thought I'd let others know.

Marcia,

Please reconsider staying with us a while longer; it seems premature. Don't forget there is a rather high diagnostic error rate with movement disorders. I would ask a lot of questions like what symptoms make him think CBD versus Parkinsonism. I don't know that it sounds unreasonable to need meds after a five year diagnosis of PD. I took that long for essential tremor to look/become more Parkinsonian.

I think that I would ask for any further testing possibe before accepting clinical observation. I think PET scans may be helpful but not sure -doesn't hurt to ask.

See Harley's recent post on having a DatScan. She has lived for the last 27 years thinking she had PD when "nope" turns out she has secondary Parkinsonism which shows loss of dopamine but not progressive loss.

Please keep us updated.

Laura

The MDS did say why he thought it wasn't PD. He did a lot of office tests and said there was no test for PD. He did say CBD is Parkinsonism. I still need more tests before he narrows it down. He didn't seem to know about DatScan. I didn't quiz him about it because they aren't available here anyway. I've learned a lot from others on these discussion boards. It seems these 'ism' diseases are similar but not the same. I thought I was classic PD. Just goes to show "just when you think you know it all" ... just kidding, I never knew it all but didn't think I'd have to start over either. It's a little chilling because now I don't have a road map.

Thanks Laura, I'll keep you updated.
marcia

He said she says
 

The MDS thinks I have Corticobasal Degeneration based on the fact that it hasn't moved to the other side in 5 years. But he doesn't know about lack of smell cause he had me sniff wintergreen and I said I could smell it. I smelt something weakly. Plus when I wrote a sentence my writing didn't get smaller just small from the beginning.

So when putting me on meds he said l-dopa won't work for me and he put me on Pramipexole .25mg twice a day. Every five days I add a .25mg twice a day till I get to 4 at a time. Today was the first day I took 2 .25mg pills.

I have noticed improvement. I can type normal (no hunt and peck) but still slow. I could dress myself without help. My muscles don't hurt like they did. The down side is I get nausea especially with morning meds. I have to eat like a cow. I used to eat a piece of toast for breakfast but now have to eat a big breakfast. The evening pill doesn't seem to upset my stomach.

I say he's jumping to a non PD conclusion too fast. But I'm going with the flow. I've got another appointment next week and he'll see how I'm doing. As long as I can function I don't care what they call it. A rose is still a rose...just watch for those thorns.

MDS follow up visit
 

I had another visit today with the MDS doc. He told me to decrease my dosage back to .5 mg twice a day because the .75 mg was causing problems. I had adjusted to the .5 for nausea. Besides nausea, breathing difficulties with the .75mg. I was so sick today. Didn't think I'd make it sitting in the doc's office. He put me on a new med to help with the muscles-benztropine .5mg. So I'll be taking two meds now. But my Lyme test came back BORDERLINE. So now have to see an infectious disease doc. The MDS still doesn't think Lyme is the answer so he wants me to keep taking the meds. So the adventure continues.

butting in here
 

I have to butt in here because I have a good friend who has been dx'd with Lyme and I swear her symptoms are so like my spouse's PD...incredible fatigue (wants to sleep all day, or at least recline), pain (a LOT), BRAIN FOG (this was what really alerted me to the similarity), balance issues, dizziness, etc. What she doesn't seem to experience are tremors, but other than that....very hard to distinguish. I was actually thinking we might want to get tested for Lyme and still may.

I'm sure you know that there are different tests for Lyme and some are better than others. Also that the longer you have Lyme before it gets treated, apparently the harder it is to treat. I would be very, very careful about taking PD meds (or any non-Lyme med) if there was even the remotest possiblity that I had Lyme. I can't believe how casually these drugs get scripted sometimes, particularly in the face of test results that indicate another condition may be at play.