Hi,
I am posting for my wife, Wendy, age 63. She has had PD for about 11 years. There is a question by her new (young) neurologist if she may have MS because of a recent brain MRI (white spots). Wendy was originally dx with MS (MRI white spots) a year before they changed it to PD (sinemet worked). As some may know, she had been on LDN for the first 8 years. She stopped LDN about 2 years ago, thinking it was not helping. Over the past 18 months she has had several serious falls and I now see PD taking over her life. She is supposed to be seen by and MS clinic in a few weeks.

Wendy is now taking 9 to 10 Sinemet 25/100 (generic) a day. She also takes Mirapex 1.5mg, if she remembers. Over the past 6 months her legs become very weak and numb after almost any meal, even yogurt. She cannot move. She is also loosing weight because she won't eat much. The "off/on" occurs within minutes and the off can be for an hour or more. She has tried sinemet up to an hour before eating. That's PD to us. She is also due to start Sinemet ER today. We have read a lot about amino acid and sinemet interaction. At some point, soon, I hope she will consider Mucana in some form. I am also interested in the Dr. Hinz treatment even though the FDA shut him down. There must be a simpler version of it.

Can anyone provide some thoughts on MS and PD occurring together?
Does Sinemet ER help (a lot) with having a meal and on/off?
Are there other meds to help with on/off?

Any thoughts will be appreciated.
Thanks, John

John,

I would most definitely talk with her doctors to see how the MS has become more Parkinsonian. There should be at least two of three cardinal signs of tremor at rest, slowness of movement, rigidity. Keep in mind many other things can cause this symptom group. Doctors will give a trial of levodopa, but...

there is a large diagnostic error rate and other disorders that mimic PD and respond to levodopa like Dopa Responsive Dystonia. It is shameful we do not have better diagnosticsss.s

If I were you; especially given the white matter, press for your wife to have a DATscan. It is a newly approved brain scan that can simply confirm PD in a much more scientific manner. Mind you if it is not PD it cannot tell you what it is but you won't waste half your life on this when it could be something you could get proper treatment for.

Best.

Laura

Also....

There are case studies of MS and PD occurring together but really rare. How long has she had symptoms of any neurological disorder. If it is PD, it is also really rare to have balance and severe walking problems early on When you say she can't walk is it more like there is a little muscle tension like she wants to go or starts to and freezes or is it a profound leg weakness where she feels she has no legs?

High doses of sinemet and agonists (Mirapex) have been associated with freezing. How much on time is the norm for her or how long between Sinemet doses?

John, regarding the symptoms in her legs-like Conductor was referring to does it seem like her legs are just very weak? I think this would lead more towards MS. If its like they are rigid, stiff and she has a hard time "getting going" or freezing this sounds more like PD. Also it is apparent she has a diagnosis of MS, correct? She has lesions? Does she have them on the spinal cord as well or just in the brain?

My experience with Mirapex was not good so except to say that it helps if you can get to a functionable level with the sinemet, then use it to boost the effect.

As far as the extended release, my experience is that for people who are "off" it will not be enough to bring you to an "on". Remember, it is extended release so it takes a while to get up to the level you need to get "on".

A few things you mention, "she is taking 9-10 sinemet a day." What schedule is she on with them? I mean let's say she needs 1 1/2 tabs to get "on" first thing in the morning. Then she never will reach it if she only takes one tab every 2 hours or so.

Here is what I did: Start out cold, off, perhaps in the morning. Took 1 tab 25/100 and noticed if I felt on within at most 45 mins. Then how long did it last before I felt I was getting stiff.

If I didnt get the on within that time frame I would take 1 1/2 to start the next day. Unfortunately the sinemet is short lasting and much is eaten up before it is absorbed. So you have to find what dose gives you the on then keep adding wood to the fire.

I know that I now take 1 1/2 tabs 25/100 when I wake then I take 1 tab every hour. Yes, 1 an hour! I am able to maintain on and I dont get the ups and downs and dyskinesia. I DO NOT take more than 1 tab after my morning dose lest I want to fight the dyskinesia all day.

You also want to monitor her bowel movements, if the works are all backed up the meds aren't gonna work as well. Frequent use of Miralax may be required. I have found this to be very important, so much so that I keep 2 btls of mag. citrate in my fridge!

I know this is a rant but hope it helps ya. Remember, you asked!

Stalevo made a big difference in treating my symptoms..Sinemet, even cr stopped working for me..If I take a half teaspoon of mucuna with stalevo, , I am almost symptom free

Thats the only thing that works fr me, but I would suggest seeing a real good MDS and find out for sure what is going on before I'd make any changes

Depression can also make symptoms spread like wild fire

Hi again,
Wendy and I have believed that she is dealing with PD. She was early onset, early 50's, with tremor on left side being most bothersome. She is now about 12 years into this and has been on Sinemet for 10 years. She takes about 10 sinemet 25/100 a day now, about every 1.5 to 2 hours. It appears that even after a small meal of almost anything, after an hour she becomes "sick", weak and immobile for an hour. This began about 9 months ago and is a daily event now and is getting worse. She isn't eating much, is loosing weight and depressed. When she is immobile, her legs become "very heavy and stiff". Last night this happened again and I tried moving her arms and legs as a neuro would. I felt no cog wheeling in her arms or legs and they were totally flexible as I moved them even though she said she felt stiff. She has never "frozen" at a doorway.

I will try to have her follow up on a Datscan or Petscan as suggested.
Jim or anyone using Sinemet CR, is the dosage and time interval about the same as regular sinemet and is it better at preventing on/of?
On Mucuna Puriens, can any of you provide more info on how you use it, effectivness, good sources and dosage?

Thanks, John

the fact that she experiences no freezing at the current sinemet dose is unusual, in other words, the sinemet is working at some level unless she has never experienced freezing, so i doubt CR is going to make any difference, CR reduces how often you need to take a pill and chances of getting dyskinesias, from what i know it's no more effective at relieving symptoms than immediate release. what i'm saying that CR might even out relief but isn't going to make it any better when compared to the best relief provided by IR.

YOU MIGHT POSE your QUESTION at

http://forum.parkinson.org/index.php...sk-the-doctor/

That is extremely true. Depression can throw you into free-fall and the symptoms can jump ahead years within a few weeks. It is almost as if PD itself becomes a black hole of depression. It is why PWP are vulnerable to emotional attack, but also why we feel so good.... when we feel good. It is why it is important for us to keep our spirits up.

\I am a bit off topic again, but it just struck me that Steve's statement is true all the time and is often neglected even though it can be a more powerful force than the drugs.:
Depression can also make symptoms spread like wild fire[

John,

Sorry I should have read your post more thoroughly before blathering on.
I am on similar dosage as your wife and been exploring different ways to extend my on time.

I see you are hopeful Mucuna will help but its half life (the time it takes for metabolism) is 90 minute same as Sinemet. You would still need an extender to avoid the on/off fluctuations. The problem lies in the insufficient delivery of the drug. For any of us to not have the peaks and troughs of medicine we need to have a steady plasma level of levodopa and only way that is going to happen is if/when the FDA approves a pump system for delivery of levodopa in a gel form. Google Duodopa - hopefully it will be approved next year. I am hoping I can use that and avoid DBS.

I can tell you traditional FDA style treatments that have worked in smoothing out the offs. Comtan has worked wonders for me. I have lowered my levodopa by 200 mg and experience no profound offs or very rarely do. It is designed to take with each dose of ldopa. There is the pill combining the ldop and Comtan into one, but near everyone complains of dyskinesia. Taking the Comtan separately leaves you more control in tweaking meds.

You could also talk to pharmacist and/or doctor to see if they will compound the dose so she could have it suspended in water and sip on it throughout the day. This formulation is more brain accessible and hangs around longer too.

Maybe mucuna can be compounded somehow too. It is associated with being taken in milk in its native India. There is an idea...you could consult with an Aruyvedic practitioner and see what they suggest.

Finally, if you haven't done so already search the archives here for mucuna.

Hope this is more on point.

Laura