Hello All,

We had an appointment with our MDS yesterday morning and I wanted to provide an update.

You guys were right on the money. The MDS said that due to my mother's lack of response to such high doses of ldopa that she does not have PD. She mentioned that if mom had PD she would have seen such dramatic improvements based on the amount of ldopa she was taking. So, the doctors provided mom with a 7 week "tune down" schedule of ldopa. During each week, the doses are ldopa are decreased. The goal here is to find a week where the dosage may possibly provide my mother with some type of relief and the side affects are minimized. As I mentioned, my mother had extreme issues with her bowels when she was on such a high dose of ldopa, which as everyone has mentioned, is a bad side affect of the ldopa.

Once we find a dosage of ldopa that may produce some relief and minimize side affects, my mother is to start taking a drug called amantadine. The dosage will be 100 mg tablets taken twice daily, once at 6:30 AM and once at 6:30 PM.

Starting immediately, my mother is to start to take a drug called klonopin. She is to take one .50 mg tablet at night. The purpose of this drug is to try to loosen up her muscles which she sleeps to help fight the extremely stiff feeling she has in the mornings.

The doctors are now leaning towards a Parkinson's Plus or MSA diagnosis. As I have mentioned in previous posts, I have done research on MSA and its ugly. I have seen that it can be fatal and that one diagnosed with MSA can expect to live for only 6 to 10 years after being diagnosed.

We also visited a speech therapist, occupational therapist, and physical therapist at the MDS location. They all offered great advice, however, the physical therapist and occupational therapist shed some light on an on-going issue. They noticed that my mother's legs were extremely swollen and full of fluid. Her legs have been like this since her second surgery in October of 2009. We have had multiple doctors look at her legs to no avail. The MDS people told us that my mother needs to IMMEDIATELY see a lymphodineologist and have lymphedema therapy performed on her legs. If she does not, she risks developing cellulitis in her legs which is an infection and can kill her!! We need a prescription to have this therapy performed so we have an appointment with my mother's family doctor on Friday in hopes that she can write the prescription.

All of the therapists mentioned that they are almost certain that once my mother has the lymphedema therapy performed that she will be able to move around a lot better because she will not be carrying as much fluid and weight in her legs. I have always thought this myself and it finally was noticed by professionals!

As always, thoughts and comments are more than welcomed.

Best Regards,

Matthew R. Smith

Matt,

Thanks for updating us. I am not at all surprised to hear this given her less than transformative response to levodopa. We give our doctors such a hard time out here, but it has to to be difficult for them to leave patients and their families in limbo too.

I can understand your concern in the alternatives, especially MSA, but try to block those thoughts out by remembering the odds are in her favor. Little comfort, I know. Did you happen to ask about the vascular form of PD?

I was looking back at your mom's presenting symptoms and am just wondering if you think they have changed much? She did have a tremor early on. Is it still present? I am just thinking that if this is indeed a movement disorder than that symptoms are essentially all a doctor can go on, and if you can closely monitor any changes, it may become crucial. Researchers and doctors just don't know the extent of what they are looking at and treating; anything involving the brain is systemic. Often, our doctors have to just sit back and wait while monitoring symptom changes...I went from having a benign tremor to PD over the course of a few years because there just wasn't enough to go on at first.


As for your feeling that this is linked to her surgeries, you very well may be right, and I always say go with your gut in these things. You probably find yourself saying it is just common sense that multiple major surgeries sin so short a time span would indeed result in major stress on anyone's system. Well, one thing I have discovered is that little common sense circulates in the air that doctors breathe. Just like the neuro who told you that the Parkinsonism emerges after some surgeries but "there is no explanation". There is an explanation...it involves doctors admitting that in practice their is a risk of an iatrogenic effect, that is in their attempt to heal they end up causing harm that they could not anticipate and it also involves admitting there are just some things that do not get studied because not enough money would be made as a result.

So...maybe you should regroup and start digging up a little more info on the anesthesia drugs used; it sounds like you need some answers in this area.

Also...did you inquire about the PET scan?

Laura