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TNdad

Diagnosed today

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Gulfvet, Please, tell the Dr. that you'd prefer to go with Sinemet, instead if the Mirapex....... Mirapex comes with a boat load of nasty side effects that you won't get with Sinemet. Yes, with Sinemet you have the possibility of developing Dyskinesia somewhere in the future, but that's not a 100% given, while with the Mirapex you have a huge chance of any of several really bad side effects. On this, I'm speaking from experience.... I mean that yes, the choice is yours, but please, for your sake, weigh the options very carefully.

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I second that, Gulfvet.  Mirapex made my ankles and feet swell, and it took months for them to improve.  Many others have reported side effects, as well, and stopped Mirapex.  Still some others did okay on it.  It's all individual, but be very careful before you make a decision to take it, okay?

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Normal tone in reference to muscle tone or rigidity. Which I was unusually flexible at the time of the exam. Which for my symptoms they do fluctuate not daily but more like hourly.

 

 

With PD no question is stupid. I have seen several post where others state I thought that was something else or a unrelated issue until others ask or comment about it. So please never be afraid of asking a question.

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Just over a year and a half now since the first diagnosis. What a strange and wild ride this has been The most important thing is to just hang on tightly to the reins and don't let go. I've officially been reclassified by two separate MDS specialists with the lovely diagnosis of multiple system atrophy. They seem to favor the cerebellar subtype since my balance and wide gait issues preceded the tremor and stifness. Fortunately I am lucky in that I am responsive to levodopa. Unfortunately, my required dosage increased fairly rapidly. Generalized dystonias are my first sign of "off" symptoms. This week we've given rytary a try with good and not so good effects. The stiffness and dystonias are much improved. Dizziness, dry mouth and very mild nausea have contributed to the downside. I was a little freaked out with the dose conversion from sinemet to Rytary. I went from 1.5 tabs of 25/100mg sinemet six times a day along with an extra 50/200 control release sinemet at bed time, to three suppository sized 48.75/195mg capsules taken 3 times a day. The conversion must take decreased efficiency of absorption into account, because that seems like a whopper of a big dose.

 

I was wondering if anyone else on the forum has been "upgraded" to one of the parkinson plus syndromes such as MSA, CBD or PSP? Statistics supposedly indicate that around 10-15% of PD patients actually have one of these parkinsonism variants. Also, has anyone shared my experience with Rytary?

 

Thanks.

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Man, I'm sorry you are going thru this. You had just been diagnosed when I started following the forum, because I was told that I MIGHT have PD, but it wasn't "official". It's terrible the different paths this disease can take. I hope you find some relief.

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TNdad, That is not good news. I hope you find some relief with the med change. Good luck and keep us posted as long as you can.

 

Blessings

Adam

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TNdad is a very dear and close friend of mine.

 

His diagnosis of MSA was/still is very hard for me to accept. And I would lie if I didn't admit that I'm still hoping for an alternative verdict. But if anyone can kick the arse of this damn disease, then it sure is him...

 

As my friend  pointed out, a subset of patients with an initial diagnosis of PD are  re-classified later on to a Parkinson's plus syndrome.

 

Given the rarity of PD-plus syndromes, many of these patients may feel isolated and helpless.

 

All us members of this community  should do our best to raise awareness of these orphan diseases.

Edited by christie
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Generalized dystonias are my first sign of "off" symptoms. This week we've given rytary a try with good and not so good effects. The stiffness and dystonias are much improved. Dizziness, dry mouth and very mild nausea have contributed to the downside. I was a little freaked out with the dose conversion from sinemet to Rytary. I went from 1.5 tabs of 25/100mg sinemet six times a day along with an extra 50/200 control release sinemet at bed time, to three suppository sized 48.75/195mg capsules taken 3 times a day. The conversion must take decreased efficiency of absorption into account, because that seems like a whopper of a big dose.

I was wondering if anyone else on the forum has been "upgraded" to one of the parkinson plus syndromes such as MSA, CBD or PSP? Statistics supposedly indicate that around 10-15% of PD patients actually have one of these parkinsonism variants. Also, has anyone shared my experience with Rytary?

Thanks.

TNDad,

 

I switched to Rytary about a month ago. I do experience some dry mouth at night, so I sleep with a water bottle next to my bed in case I wake up I can take a quick swig to wet the old whistle. My dose is not as big as yours, I take three 23.75/95mg pills 4 times a day. I think the increased dose is two fold, part of it is waste and the rest is what is needed to last the entire dosing schedule. I've also experienced the lightheadedness when I got up to fast a couple of times, so be on the lookout for that.

 

Dave

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TNdad,

 

So sorry ....like Christie says " kick the A__ out of this damn disease"........we are all here for you!!

 

My best to you,

 

Laura

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Thanks all,

I appreciate the kind words. In truth, things could always be worse. We should all try to remember that we have a disease, but it doesn't own us unless we let it. Keep moving, loving, learning, caring for others and doing all the things that bring you joy. As a kid, I looked forward each month for the Readers Digest in the mailbox. It's kind of corny, but my favorite section was "Laughter is the best medicine". Yes, I didn't get out much as a kid. Anyway, it's true. As a physician I can personally attest to the healing power of humor, laughter and not taking things too seriously.

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sorry things just got dumped a bit more on you........again.   hang in there, best to you, and at my age, i really remember the " laughter is the best medicine " fondly.  i love the days my stress is milder, and i laugh more.  always feels good........so fight this and laugh along the way !  

x lu

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TNDad,

 

Sorry to hear that you received bad news. Could you share how they diagnosed you with MSA? From what I've read, I understand that less than 1.5% of patients with MSA are responsive to levodopa. You said that you are responsive to levodopa. Also, the symptoms of MSA appear to me to be identical to the symptoms of PD.

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PatriotM,

I had hoped to attend the MSA coalition conference in Seattle this weekend in order to learn more about this disorder. I wasn't able to make the arrangements in time which is just as well because I discovered the conference was available for streaming online for free. It was very informative. I still question my diagnosis of MSA-C. MSA-P seems a better fit because of my parkinson symptoms. I've learned that up to 30-40% of MSA patients will show response to levodopa therapy, younger patients especially. The dosage usually required is between 800 and 1100mg per day but effectiveness often attenuates.

The overlap with idiopathic PD symptoms makes it just about impossible to diagnose early in the process. There was a great article recently in the New England Journal of Medicine summarizing the pathophysiology and symptoms. I found the article online for free by searching for NEJM MSA BLOG. Feel free to give it a try.

There are several presenting symptoms which raise red flags for MDS neurologists. Some include wide gait, early balance issues, early autonomic dysfunction symptoms, refractory response to levodopa often requiring higher dosage, early falls (within the first year of diagnosis) and early need for walking aids such as a cane. Life expectancy may be increased by staying physically, mentally and socially active. That's my plan. That should be the plan for all of us with any form of parkinsonism.

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TNdad,

 

Thanks for posting the NEJM info. I read the article and found it very interesting. Talk about a complicated and difficult diagnosis. Obviously, it takes a very competent and experienced MDS to make this kind of differential diagnosis. Please keep us posted.

Edited by PatriotM

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tNdad,

 

Thanks for sharing your story...I knew you also when you started in the forum..and I am sorry for your circumstances.

 

Can you tell some of the outlying autonomic symptoms you had before dx....specifically, eyesight, increased walking/balance challenges, cognitive, GI, sweating, variable BP, sleep apnea, and saliva flow? Any of these symptoms reflect the possibility of a PD subset? I see a new Neuro tomorrow...seeking some background info.

 

 

Stay strong.

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Thanks New normal and best wishes,

 

Looking back at the water that passed under the bridge almost 2 years ago is a challenge. I was extremely busy in my practice, dealing with newly diagnosed asthma, and recovering from bilateral hernia surgery.

I do remember a burning ache developing between my shoulder blades when doing my evening excercise on the eliptical machine. There was drooling on the pillow and worsening of nighttime reflux with a few terrible aspirations occurring 5-6 hours after eating dinner and going to sleep. I remember many mornings waking up with the feeling that the previous nights dinner was still in my stomach. Looking back now, this may well have been a bit of gastroparesis. A colleague commented a few months back that he noticed my widening gait before the diagnosis.

My first orthostatic fall occurred about 6 months after the PD diagnosis. Cold hands and feet also developed and were very new for me. I see a urologist at Vanderbilt this Friday for urinary hesitancy/retention issues. My fingers are crossed that at my age (common things being common) it's just early benign prostate hyperplasia and not autonomic nervous system issues. In the mean time, I'll also keep my legs crossed and hope the urologist has skinny fingers;)

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My fingers are crossed that at my age (common things being common) it's just early benign prostate hyperplasia and not autonomic nervous system issues. In the mean time, I'll also keep my legs crossed and hope the urologist has skinny fingers;)

LOLLLLLLLLL!!!

 

Reminded me of my father's last visit to the urologist... I can only guess that the urologist's fingers were far from skinny...

 

TNdad,  I truly hope you will be luckier than my dad...hahaha...

Edited by christie

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TNdad, I have had the night time drooling and bad acid reflux for several years. Well before the tremors started. I would also wake up from naps in the recliner choking on my saliva. I never thought that these were early warning signs of PD.

 

I plan on discussing these early symptoms with my neurologist next month to confirm his PD diagnosis.

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After 3.5 years diagnosis changed to stiff person syndrome.  Back on walker now after several bad falls.  Finding current medical system care seemingly apathetic.  My one wish is to get better, and go back to practicing medicine putting the patient first, always.  I would say to any practicing physician to get out and find another profession if you don't put the patient first.  It seems to me that the best, brightest and most caring people are shying away from medical training.  Regulations by government beurocrats have removed the science and art from what used to be a wonderful profession.   Sorry to preach, but this has been my personal observation from both sides....doctor and patient.  Thanks for letting me vent.  I wish you all the very best.  Try not to give up hope...it's too easy to do.

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