Hello All,

Thanks so much for the replies and the positive words. I know that my mother and my whole family appreciates the effort that I put towards this unfortunate situations, but to hear addition kudos from folks like yourself makes me feel very good inside.

Laura, to answer your questions:

1. Yes, she had two (2) spinal fusion surgeries, one in April of 2009 and the second in October of 2009. After the first in April of 2009, she was still able to make the steps by herself. After the second in October of 2009, everything went down hill.

2. Yes, I have expressed my concern to both neuros (the specialist most recently) that all of this happened AFTER her surgeries. Both neuros have explained that there are cases where the surgeries bring out the PD (or whatever our case ends up being) and that there is no explanation for why it does. I'm no doctor, but to be it HAS to have SOMETHING to do with the anesthesia and the stress and tramua the brain realizes during surgery. My mother has technically had a total of 5 surgeries that I am aware of, 4 of them being between 2007 and 2009.

3. I agree that the VP that you posted a link to matches my mothers symptoms and issues, almost identically. Yes, she had an MRI and both neuros (including the specialist) have looked at the MRI and never mentioned anything specific about what they saw

4. I am going to make a note that when my mother and father go back to the specialist in Philly in 2 weeks to inquire about the PET or SPECT scan. FYI - the specialist works at the University of Pennsylvania Parkinson's Disease and Movement Disorders Specialist group if I have not already mentioned in a previous thread.

I feel much better knowing that we are in the hands of a movement disorder specialist, but I am also saddened and frustrated that we are now most likely looking at an atypical diagnosis to which mediciation does not seem to be a treatment for relief of the symptoms.

Continued thanks to all,

Matthew R. Smith

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

You've come to the best possible place to get some answers. Welcome to the forum where others truly know what you're experiencing.

My gut feeling regarding your mom is that the Parkinson's was brought on by stress. I can almost tell you the exact date, let alone the time, that my symptoms became prevalent. I was 44 years old when I was diagnosed and am now 50. I don't doubt that the symptoms would have reared their ugly heads eventually, but I also think the extreme stress I was under caused the sympoms to begin earlier than (perhaps) they would have.

As you've been learning, there is no specific test that will tell you with 100% certainty whether someone has PD or not. The general rule of thumb is if Levadopa provides relief then it has to be PD. I concur that it's really important that your neuro be a Movement Disorder Specialist.

Now this is where I throw a monkey in the wrench ....

Your mom is relatively young to have been diagnosed with PD. What I'd like to know (from others) is why her neuro didn't start her off with agonists instead of going straight to Levadopa?

From my understanding, and please correct me if I'm wrong, once a patient begins taking Levadopa, the clock starts ticking. You have between 5 and 10 years before the symptoms from the medication are worse than the PD symptoms.

I ask this because, for the past six years, I'm STILL on agonists (Mirapex and Artane) and function quite well. I'm quite proud of this because it means that I don't (yet!) have to deal with the symptoms of Levadopa. If I can go another six years, I'll be thrilled. Do any of you think that agonists should be tried, first, for her symptoms?

I look foward to some replies.

Terri,

My mother's symptoms because extremely evident after a spinal fusion surgery in April of 2009. Her recovery went quite well and then she required an additional fusion surgery in October of 2009. When she came out of the surgery in October of 2009, she started to decline.

Sure, perhaps if she would not have had the surgeries her symptoms would have surfaced one day down the road. Yes, the stress induced from the surgery and the chemicals her brain was exposed to during the surgery caused this, who knows.

I have never really heard anything about agonists being used before ldopa. However, I am glad to hear that you functional quite well using them. I have read about some of the long term side affects of ldopa and the fact that it becomes a juggling act with regards to symptom relief versus what the body can withstand with regards to the side affects.

I am so glad that I joined this fourm back in February. I have met some amazing people with great advice, insight, and support for which I am extremely thankful. I have used this forum and this thread as a tool and will continue to do so.

Thanks so much for the reply.

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

Hi Proudest_Mama,

I'm a proud mama too ( a wonderful 21 month old boy). I just wanted to chime in here on the levodopa vs. agonist debate; largely because there is a lot of misinformation that floats around out there, and it drives me buggy.

First it is an absolute myth that a person only has 5 to 10 good or honeymoon years with levodopa before the dreaded dyskinesias set in and disable you for life. The fact is that if you respond well to levodopa you will continue to do so and will most likely be on it for a very long time. It is the increased dosages needed and the inadequate delivery of the drug; not the drug itself (which is merely a synthetic form of what we used to naturally produce- no big mysterious additive) that causes the unwanted movements. Believe me, and you are very fortunate so far, if you get the point where you can't move...looking a little jittery to others is a trade off you can live with. There are people who suffer from severe dyskinesia, and I feel for them, it would suck. I can't imagine getting to that point of having to balance between the extra movement and the not moving, but many people (not all patients qualify) do get relief at that point from DB

So the fact is many PWP can benefit from levodopa for many years up until death; we all experience dyskines severity a little differently.

Agonists are not without side effects. They tend to cause a range of Impulse Control Disorders from punding, to hypersexuality, to full blown pathalogical gambling. It can and does continue to ruin lives. It can cause severe sudden sleepiness which is rather a bummer if that hits you when you are driving, then at night it can cause insomnia.

However, for most PWPs the agonist does not give nearly as much symptom benefit as levodopa and has to be taken at high doses to even give any relief. There is an addictive factor wherein some people have extreme withdrawal symptoms and some people find they then have to permanently take it. Imagine a drug that your withdrawal is so severe and unremitting that you have to go back to taking it at full dosage just to avoid the withdrawal effects; these effects are different than your PD symptoms returning with a vengeance.

What really concerns me is that there is now a documented Levodopa Phobia. It is rampant in the YOPD community, and worse. I believe started and perpetuated by their doctors. The neuros themselves will support this in their reluctance to prescribe levodopa earlier on. They end up under-medicating patients and they suffer when it is not necessary. In fact the current guidelines for neuros to follow in starting patients on drugs is to not withhold levodopa therapy as the first drug prescribed.

As for Matt's mom; she has extenuating circumstances...to give her an agonist would have been grounds for malpractice as one of the main side effects is edema. In her case, a definite no-no. Plus, I think her cognitive issues may have put the kabosh on an agonist. Have also read that the older we get, the more agonists cause hallucinations, and the less likely we are to experience dyskinesia from levodopa.

In tossing some crude measure of dopamine at our little conundrum, we are essentially trying to restore a delicate interplay of biochemical and electrical workings that are like a ballet with a heavy metal treatment that sometimes results in cacophony.

Frankly, looks like no matter how you slice it, we all a wee bit fracked.

Laura

Laura,

Thanks for the detailed info regarding agonists and levadopa. I always like to hear good things regarding levadopa because that's my next step. I'm at the highest possible doseage for both Mirapex and Artane ... but the flip side is that I've been at this dose for 3 or more years with no problems.

What I, personally, like about the agonists is if I forget a dose or two, it's not a problem. Oh, I experience stiffness and tremor but it's mild enough that others can't really tell. From my understanding (and tell me if I'm wrong), it's a lot harder to maintain a proper balance with levadopa. Maybe this only happens when you've been on it for many years.

Again, I appreciate your detailed description. The knowledge, alone, calms me.

And my children are a LOT older than your son! They are 25, 24, 23 and 19 years old with my 24 year old my only daughter. Enjoy your time with your son. Being a mom was (and is) my most important role in life. I wouldn't have it any other way!

Laura,

First of all, you are a wealth of knowledge and I cannot begin to express my gratitude for your continued interest and compassion!

In response to your questions:

Yes, we asked about Vascular PD. The doctors told me everything you did with respect to VPD being more of a lower body issue than an upper body issue. However, the MDS had my mom do things such as tap her index finger and thumb together as quickly as possible, open and close a fist as quickly as possible, etc. My mother is able to do these, but very slowly. With this in mind, the MDS feels that my mother has issues in both the upper and lower body, and thus does not feel as if she has VPD.

The day my mother came out of her first surgery in April of 2009 I went to visit her in recovery. It was that day that she complained that she could barely hear anything in her left ear. It was that day that she had extreme tremor in her left hand. At that time we attributed it to the anesthesia. The hearing never improved. In my opinion she no longer has any tremor, however, my aunt, who is a nurse, claims to have noticed a tremor in my mom's hand in May of 2008, long before any of this. If she does indeed still have a tremor, I do not notice it and I am extremely observant.

I have always wanted to further investigate the types of anesthesia used in her back surgeries, but never put much thought into the best approach in attempts to obtain that information, and obtain it lawfully. Any suggestions?

Yes, I asked about the PET Scan. The answer I was given was in the context of a DAT Scan and how it is still research-based and is used mostly in Europe. The MDS did not seem to show much interest in them and expressed the fact that she felt it would not help determine anything in my mom's case. However, she did ask if we had ever had an MRI performed on my mom's brain. This was a bit freightening because during our first visit in November, we provided the MDS with the MRI films which she left the room and examined, and apparently never documented her observations.

I am trying to remain optimistic that after we go through the therapy to have the fluid removed from my mom's legs that she will get some mobility back because she will not be carrying around all of the extra weight in her lower body.

Thanks for the continued support.

Matthew R. Smith

Hello All,

I wanted to provide you with an update as I spoke to my mother on the phone this evening.

Prior to our most recent MDS appointment, my mother had been taking CD/LD CR 50/200 at 9:30 PM before bed. Her latest medication schedule has her taking her last IR 25/100 pill around 6:30 PM. She mentioned that when she wakes in the evening to use the bathroom she is as stiff as a board. She called her MDS today who is out of the country but a nurse took my mother's message and will be emailing the MDS in hopes of receiving a reply tomorrow. My opinion is that the pill my mother was previously taking around 9:30 PM must have been doing her some justice as now that she has stopped taking it she notices more stiffness. I believe that perhaps this is a good sign that the medication was doing her well. My prediction is that the MDS will recommend 1/2 of the CR 50/200 at 9:30 before bed, or, 1 full IR 25/100 at 9:30 before bed.

My mother also commented that the .50 mg of klonopin that she is taking before bed is assisting her in sleeping, which is good. I purchased her a "bed caddie" on amazon.com which will hopefully assist her in getting in and out of bed into comfortable positions.

Also, my mother and father went to her family doctor last Friday and received the prescription for the lymphodema therapy. The first session is on the 28th of December.

Matthew R. Smith

A belated Merry Christmas and a healthy and Happy New year to all!