Hello! I would really appreciate guidance...

Background:
Husband's tremors started 10-13 yrs ago. at age 37-40. They were slight/occasional in hand at first.

About 3-4 years ago things started picking up. Now - age 50 - he has tremor mostly in his right hand (most pronounced). But he also has a fair amount in his right leg and chin. And a little on his left side.

He hasn't been on any meds (save a couple of days here and there on miraplex and the like - didn't like the side effects - and he tried primidone for a bit).

He has been to a Neuro (in Feb 13) - doc said it looked like PD and prescribed Amatadine - husband didn't try.

He just went to a MDS today - doc said it looks more like tremor with maybe a little early PD. <<diagnosis is so confusing>>

MDS wants to start with Klonopin and treat tremor first and do MRI and a dopamine scan to see about the PD. Is Klonopin really indicated for tremor/PD?? I've not been able to find much favorable.

What do you all think?

We're not crazy about him starting benzos... has anyone had luck with them? I've read on here that it can be good to take some ldopa to see if there is a response because that will tell more about the PD..

So confusing! I'm worried about him taking benzos. He doesn't handle stuff like that well and coming off of them at some point sound horrible. Maybe I'm worrying needlessly??

To me he also seems to have some face masking and low voice - but it may just be me or he may have some depression...

Ack! Sorry this is so long - starting meds just seems scary; he is young yet and there seem to be so many repercussions depending on the path chosen...

If you read this far - THANKS!!

i'm not qualified to offer medical advice and i don't have tremor.
a good starting point for understanding pd and associated diseases is THE PARKINSON'S DISEASE TREATMENT BOOK by ahlskog, should be able to find a used copy on ebay or amazon for less than $10.00

i guess you have to decide if you'd rather take the advice of complete strangers on this board whom you don't even know for sure have pd vs. your MDS. If your insurance will pay for a DATSCAN, why not get one?

You are worried about starting meds because it's difficult to stop them? I understand that, that the case with all central nervous system drugs. But what quality of life does your husband have right now?

Best of luck.

Soccertese - THANKS so much for your response!

Yes, we're worried about the meds because of how hard it is to stop them.

My husband isn't opposed to starting meds - he thinks it is finally time to look at them seriously (I agree!). We're just not sure where to start. And, I've read enough to know that this is a very unique time - he'll no longer have a 'blank canvas' so to speak.

Personal experiences from others going through the same thing are helpful!

The MDS he saw today - for the first time - is the only one around us and gets *very* mixed reviews. We're definitely gathering information from all sources to make the best decisions - and feel comfortable with them.

doctors change patient meds all the time when you start taking meds, the accounts you read here about difficulty getting off pd drugs are from people who have advanced pd and have been taking pd meds for years. 1-2years after being diagnosed i was in a clinical trial where i switched from one established drug to a new one being tested . after 6 months, they cancelled the trial and i went onto a 3rd drug. i think you're worrying too much about starting meds, you can stop them. imho you seem to need to find a neuro/mds you feel comfortable with.

keep in mind that before levodopa, pd'ers suffered horribly. just like when penicillin was developed during WWII, the first levodopa was rationed and given to the worst pd sufferers. they almost all developed dyskinesias, showing that it was the advanced disease that created the situation where dyskinesias occurred, not the levodopa. i only bring this up to point out pd is a progressive disease with or without meds.

Hi MrsMac
My non-professional opinion is that I would stay away from the addictive benzos unless absolutely necessary. There is a lot of information on this site about various PD medications.
You didn't mention the MAO inhibitors so I don't know if your doctor mentioned this class of drug or not. I used Selegeline successfully as my only PD drug for many years (7-9?). There is a more modern version of that med now- Azilect.
I know it is complicated but I recommend lots of reading and helping your husband to take charge of many decisions in working with his doctor.
Good luck.

If it were me, I would be extremely reluctant to start any drug without the DAT scan to see what the dopamine was doing in the brain.

You should know that a positive response to sinemet and/or Mirapex does NOT necessarily mean you have PD: I read just today of a three=person case study in which each person was dx'd with PD, put on PD meds, responded positively to those PD meds, but actually had a hyperparathyroid issue.

A hyperparathyroid mimicks PD symptoms, progresses like PD does, and is often mistaken for PD. You can google Dr. Norman in Florida, he is a world expert on the parathyroid, and see if your husband's symptoms may be due in whole or part to an issue with this gland. If one has a parathyroid problem (almost always a benign growth), I understand that a 20 minute surgery resolves this problem, as in, cures it.

Additionally, search this forum for Vitamin B (specifically B12)...deficiencies in this vitamin can cause a lot of symptoms like PD.

As well, issues with the thyroid (not parathyroid) can cause symptoms much like PD. If this is an issue, you will have to take a thyroid med for life, but hey, it fixes the problem.

I wish we had not started with the meds, they were never great to begin with and are causing us more side effects than benefit now, and we have tried unsuccessfully to get off of Mirapex 3 times now

Be careful how you proceed.

Thanks! You bring up an great point. He has already waited this long - the DaT Scan is scheduled for Oct 1st. I like the idea of waiting for the results - I'll see what he thinks.

Victorialou - We're both concerned about starting off on the really addictive benzos - we need to do some more research on alternatives!!! It is easy to spend hours and hours researching information - there is so much to learn.

The information on the thyroid and B-12 needs to be checked out - thanks! According to his most recent blood work, his calcium is in the in 9s (right where it should be). We have his Vit D level coming up nicely (from 21 to 40). A couple of the other levels (i.e. PTH and B-12) do not show up on the results - will need to see about a better workup. He does take 5000mg B-12 Methyl each day....

I appreciate everyone sharing their personal experiences - it helps!