Originally Posted by ashleyk
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.
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.