Following a horrendous two and half year take-down when I changed my agonist Bromocriptine to Mirapex I am still unstable. I wish I had never heard let alone take Mirapex which led to long freezing attacks, delusions, being reduced to crawling around on my hands and knees, obsessive buying on-line. It was and still is a nightmare. I had a small breakdown after I ramped off it too quickly (9 days)

I am on 800mg of Sinemet CR and l-dopa RR 350mgs, total of 1150 mgs daily. Whenever I take my meds (4 x daily) my legs start to violently tremor for up and hour and a half. It seems like it is too much dopamine. My legs go rigid and I get terrible foot dystonia. It puts me down on the floor lying or sitting until I start to loosen up which like I said takes well over 1 1/2 hours.
My best time is at night when my last dose is 1800 hours (6pm) until my first dose at 0600 in the morning.

I get pins and needles and numb feet when I am getting close to my next dose time (up to an hour before). I can hardly walk without pain. My feet are red and the left side of my face around the ear area is numb and has been for a few months. I had a cat scan and nothing showed up. I also had a nerve conduction test and everything was pretty much normal.

I was dx. 11 years ago, symptomatic 2 years prior to that. Is this the norm after the honeymoon period is over and the medications stop working or seem to stop working? If I walk any distance at all my legs go numb, I get heat radiation and then fall over. My hips hurt when I sit and my legs seldom relax

I don't have a life anymore and can't seem to find out if there are other contributing factors. I am driving myself nuts wondering if things will ever change or this is what I have to face as this pd progresses. Makes me think I'll be looking for "my youth in Asia"

Any info or someone going through the same thing; any advice? I see my neuro tomorrow.

...that tomorrow the doc will recommend DBS. It'll be a lot easier than trying to sort out what's going on with you. With all due respect to the overworked docs, it's better for me to work out the balance myself. If I think I'm taking too much Sinemet, I (not you, I) take a little less and see what happens (one neuro laughed out loud at my 3/4 tablets). After nine years since dx, I've given neuro a lot to take credit for. Fine. I'm having a rough time, too, and I'll by golly figure it out so I can live MY life the way I want to. I'll stay in close contact with doc and I never do anything extreme, so I get some trust, but refusing DBS has me in the dog house.

BTW, I take, per day, 40mg Istradefylline (not yet FDA approved--I am in a long-term clinical trial), 450-500mg Sinemet (brand name), 750-800mg Comtan (which I think is behind some of my problems), 15mg Requip (which was substituted for Mirapex after I had gained 100lbs), 90mg Cymbalta, some vitamins, a baby aspirin, oatmeal, tea and chocolate. I have a prescription for Amantadine in hand but want to balance what's screwed up first.

So yeah, smc, the line we walk gets finer and finer. Best of luck.
Jaye

Hello there. Well, yes, I have recently gotten off Mirapex after almost a decade on it, and I feel like I have been let out of jail. Yes, I had the compusive loss of financial control thing, dystonia so violent I was in the ER, ongoing confusion, hair loss ,weight gain, the works. I think Mirapex is the B**** Goddess - it helped a lot in some ways, but it is unpredictable, seems to hasten the disease process, and created many terrifying situations. I seem to feel much better now that I have been off of it entirely for several weeks, but yes, I would take AT LEAST ( this is just from my experience, I'm no doctor) 6-8 weeks to titrate off it. And have some kind of backup plan.

For me right now that is the Neupro patch which I have to get off of, because it's being recalled and won't be sold in the States, looks like.

But anyway, I'm not having those super-scary moments anymore -even tho I have the on-off fluctuations, they don't feel frightening anymore. Plus I can really sleep at night for the first time in nine years, am not nearly as stiff when I wake up, and feel fatigue and the restorative effects of true rest like a normal person almost. The dystonia is extremely mild and controllable with some relaxed breathing - it goes away almost immediately - and this is from someone who used to take 5 Sinemet and 5 Benadryl at one time sometimes before I could stop writihing on the floor in agony.

So I told my doctor that no matter what, I am not going back on Mirapex. And I'm not going to take its evil twin, Requip, either. I know they really help some people, and for that, I thank god, they are a blessing. But for me, ultimately Mirapex was a disaster...

But take hope. I was diagnosed 17 years ago, had symptoms for years before that, and I am improving. Even my doctor says "You're turning back the clock..." And I'm convinced that it has a lot to do with somehow taking charge of my body, and refusing to believe that it can't get better.... And the less I turn to the drugs for the answer, the more empowered I feel. Meditation, dance, singing, Chinese exercise and visualizations, supplements, rigorous positive thinking, herbs from South America, having a sense of purpose in life, all have helped me through the dark hours. And I really know those dark hours, too....

But good luck with the doctor. You should check out what other people are trying - like the cough syrup thing, maybe Azilect? not sure about that one - LDN, I find the ginseng and rhodiola rosea to be very helpful - usually not in a dose-related way, but in overall energy and conditioning. Tomorrow I have an appointment to try those acupuncture ear implant things that apparently are proving very helpful with a number of PD'ers. I try to always remember that no matter how dissed I feel by the meds, hey, it's my body, and at some level I am still in charge. I refuse to cede that power. Hope it goes well tomorrow.

I was also part of Phase I, II, and III of a Clinical Drug Trial for Istradefylline which I seemed to tolerate well. I got kicked off Phase 4 because of too many drug changes, going off Mirapex, trying Requip etc. I wish I had never got involved with any of it.

Hello Smithclayriley,

Wish I had annswers for you, but instead, have a question. What exactly is a nerve conduction study and who does it and why? Does it reveal muscle function? I've seen 6-7 neuros since dx in 2000 and not one has ever mentioned it. Did your test show ANYTHING abnormal at all? Did you request the study? Response appreciated when you are able....

Anyone else out there had this study/test?

Thanks, Ibby







QUOTE=smithclayriley;254294]Following a horrendous two and half year take-down when I changed my agonist Bromocriptine to Mirapex I am still unstable. I wish I had never heard let alone take Mirapex which led to long freezing attacks, delusions, being reduced to crawling around on my hands and knees, obsessive buying on-line. It was and still is a nightmare. I had a small breakdown after I ramped off it too quickly (9 days)

I am on 800mg of Sinemet CR and l-dopa RR 350mgs, total of 1150 mgs daily. Whenever I take my meds (4 x daily) my legs start to violently tremor for up and hour and a half. It seems like it is too much dopamine. My legs go rigid and I get terrible foot dystonia. It puts me down on the floor lying or sitting until I start to loosen up which like I said takes well over 1 1/2 hours.
My best time is at night when my last dose is 1800 hours (6pm) until my first dose at 0600 in the morning.

I get pins and needles and numb feet when I am getting close to my next dose time (up to an hour before). I can hardly walk without pain. My feet are red and the left side of my face around the ear area is numb and has been for a few months. I had a cat scan and nothing showed up. I also had a nerve conduction test and everything was pretty much normal.

I was dx. 11 years ago, symptomatic 2 years prior to that. Is this the norm after the honeymoon period is over and the medications stop working or seem to stop working? If I walk any distance at all my legs go numb, I get heat radiation and then fall over. My hips hurt when I sit and my legs seldom relax

I don't have a life anymore and can't seem to find out if there are other contributing factors. I am driving myself nuts wondering if things will ever change or this is what I have to face as this pd progresses. Makes me think I'll be looking for "my youth in Asia"

Any info or someone going through the same thing; any advice? I see my neuro tomorrow.[/QUOTE]

I too was having a lot of problems with my meds. My neuro put me in the hospital for a drug holiday!!! I think what you may need to do is try this on your own at home if you can get someone to help you get up and bathroom, etc. First off all for me sinemet CR is way too slow to be of any use especially first thing in the morning! Start out with 1 sinemet, chart the on/off times the go from there. It seems like you are getting this build up of sinemet CR all day then you are better later in the day. The regular will not last as long, for me it lasts about 2 hrs. But then I am off so I take another at 2 hours and I am fine. Then you can add an agonist or whatever and see where that puts you. I was able to double my on time with stalevo. Requip and mirapex were a disaster-hypersexual,compulsive, falling asleep at TRAFFIC LIGHTS!!!! Could not pay me to take it again. Hope this helps but I think that you could benefit from clearing the slate so to speak. Hey make a chart across the top put the time is hours 8am,9,10,etc. on the side put on with dyskinesia, "on" and then "off". Chart when you take a med the on time and its effectiveness. This should be of help to your neuro. If at all possible get DBS!!!!

They probe your legs with an electric probe to see if you have nerve or circulation problems (such as narrowing of the arteries). My neuro has someone come to his office to do the test if a patient is referred or requires one. It takes about half an hour.

I forgot to mention I was referred because I had bruising on the top of my foot that did not go away. I still don't know why that is happening.

[/QUOTE]

A nerve conduction test is used for conditions like MS. The problem is not the muscle, its the nerve itself. In PD the conduction test would not apply, theres nothing wrong with the nerve.

It is inspiring to hear at 17 years you have turned back the clock...............I'm trying. I do the vitamin/herb thing and would be swimming and exercising if I could walk. The pain is the worst. I don't know why I am not 'starkers'. I have also been to ER 4 times in the last few months. They just give me anxiety meds and send me home. One time they sent me to the Salvation Army Homeless Shelter. The next day I was told I had an appointment with Mental Health downtown. I had no cloths so I was sent in my pj's and my yachting shoes, no socks. Can you imagine? I didn't even have my shades to hide behind. I felt like I was in "One Flew Over the Cuckoo's Nest"