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So after all these years, Dr is taking me off all meds?

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Unread 06-12-2010, 10:11 AM   #1
madamlash
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Default So after all these years, Dr is taking me off all meds?

Sure, I've had several instances of denial.... "no, I don't have Parkinson's"... well, maybe I do. I certainly seem to have most of the symptoms. I've gone thru several doctors and several years of meds. I've had all the experts tell me that I absolutely have PD, take the meds and one told me to go buy a cane! The guy with the cane remark was lucky I didn't follow his advice and come back and beat him with it.... so much for bedside manner. I am taking Carbidopa/levodopa 25/100 (1.5 every 4 hours round the clock) and Comtan 200 (1 every 4 hours round the clock). Just the other day, I went to the dr and suddenly there was a big concern over the amount of meds I am taking. hmmmm???? Confused me since it was the dr who prescribed it, I didn't determine the dosage, he did. Now there's a big deal about taking me completely off all meds to see how I look and act. Scary! So, I walk out the door with a big schedule in hand of how I am to reduce the meds down to 0 in the next 6 weeks.
Anyone else have this experience? Anyone else discover that they didn't have PD after several years? I've got to say that I work a full time job and the idea of going off the meds while trying to maintain my life is really, really scary. Any thoughts?
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Unread 06-12-2010, 11:51 AM   #2
Jaye
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Default Oh, yeah...

The same thing, more or less, happened to me. On May 6, 2009. I'm sorry I can't reply in depth right now (I'm traveling).

Doc would NOT listen to how I'd progressed, just kept telling me to reduce drugs. Reason given: if I'd had PD dxed for 11 years, I'd have been brought in in a wheel chair after being off meds for 12 hours. He wanted 24 "so he could see me 'off,'" but I refused. He found cogwheeling in my arms, insulted me several times, and told me he diagnosed PD but I was still to reduce meds (originally he had ordered me off ALL meds over the PHONE).*

It took me several months to get back on an even keel. Then my NEW neuro's receptionist told me to come in for my first appt in a 12-hours-off state, and I was tired of fighting it so I complied. It has taken me months to recover from that, and it turned out new neuro didn't want me "off," but "on" for a first visit. New neuro DID also find cogwheeling and other signs on exam. then had me take a dose of Sinemet and wait 15 minutes. Guess what---no cogwheeling after only 15 min on the drug.

The neuro I fired said I must have a rare familial kind that's mild.

I think I've followed many tips and advice from my reading and from my friends here, and have kept side effects down to a minimum. Of course being thrown off drugs twice has left its tracks.

I didn't think it could happen to me, Alice Braithwaite Goodyshoes, but I was like a deer in the headlights (there's more to the story). I had seen former neuro for FIVE YEARS, and we had built up some trust going both ways, I thought.

I was so wrong. (Are you reading, Michael?)

The lesson is this: we don't work for them. They work for us. We pay them for consultations but our bodies are our own. Don't let them bully you. Go to another doc ASAP, and keep doing it until you find one you can work with. I have been giving this exact same advice here for years and years, and yet when it happened to me, I couldn't believe it. It happens to lots of people, no exceptions for trying hard to take care of yourself.

Good luck, sincerely, madamlash (scary name!). Welcome to NeuroTalk.

Jaye

* Somebody please explain about neuroleptic malignant syndrome. Six weeks seems like too sudden to me, but I'm no doc.
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Unread 06-12-2010, 10:46 PM   #3
pkell
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Madamlash,

Please heed Jaye's advice.

My mother in law (who was diagnosed with PD though I have since been told it was probably a Parkinsons + thing) was taken off sinemet in a hospital under doctor's care and completely froze up. She walked into the hospital and in five days she was not able to recognize her children, her Achiles tendon was painfully contracted and before leaving both had to be severed in order to be able to sit in a wheel chair.

This was about 1983 and they are far more careful now but it does illustrate what a powerful drug this is and the level of physical dependency that can happen.

Good luck whatever you decide.
Pam
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Unread 06-13-2010, 04:03 AM   #4
lou_lou
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Lightbulb dangerous plan please, get a second opinion

many years ago an uneducated doctor in neurology
after being diagnosed by many top doctors in the field of neurology and by neurosurgeons

yelled at me - and took me of PD meds because she said - I had Multiple Sclerosis! that was a stupid move
I wound up in ER bad shape! get another doctors opinion - and maybe a third
doctors opinion
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Unread 06-13-2010, 07:18 AM   #5
lindylanka
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I had a similar experience around 3 years ago. My then neuro, who had never seen me in an unmedicated state, and whose appointments were always mid afternoon, suddenly started saying "I see no signs of Parkinson's'. I was on 100/25 sinemet plus, and 100/25 sinemet CR three times a day, nothing else, and taken exactly as prescribed. He started talking a lot about sinemet being a dangerous drug, and highly addictive.

I was taken into hospital Nov 2006 and my medication was taken off me. I was to undergo a 2 week 'washout', as it was not considered that I had PD. There was no tapering off, I was just there, on a neurology ward, no meds, and they were examining me twice a day. First day was pretty much as I expected, my meds wore off, I had the usual 'wearing off' side effects that I had come to recognise, and then I sank slowly into being less mobile. It was in any case evening, and I was not on an overnight dose normally. The next morning I was stiffer than usual when I woke, and very slow, but a bit functional. As the day went on I lost that and had to hold onto walls to get to the loo. I was blank faced, shuffling, rigid,and felt worse than I had ever done. The third and 4th days I turned into something that a visiting ward sister, who was the daughter of a friend, described as 'unbelievably different to how we have ever known you'. The fifth day the head of the neurology unit, who is now my current neuro, came to see me. He examined me, and discussed things with me, asked me if sinemet helped, and said 'I can see no reason to discontinue your treatment' and invited me to attend his clinic the following Tuesday. I was throughout this hospital experience treated as if I was a malingerer, except by this doctor, and was not allowed to take my meds until I had been discharged. A nurse waited with me till my taxi arrived, and I took my meds while in the waiting room. By the time the taxi came I was starting to come on, and was able to get in without too much help. I could see from the look on the nurses face that she took this as proof that I had been 'putting it on'.

It was a salutary experience, both in terns of the way I was treated, and in the way I am underneath medication. My son, then still at school, had helped me keep mobile while I was at hospital, coming in after lessons to help me walk along the corridor, it took me nearly half an hour to do a 100 yards, the three steps up that would have taken me to get out of the building completely defeated me; to this day he hopes he never sees me in that condition again. I could not dress myself, get myself into the shower, swallowing was difficult, and food and drink was a very hit and miss affair.

I never had any apology from the department, though my current neuro has, since I saw him the next Tuesday, by then mostly mobile and looking about 20 years younger, always referred to my condition since as 'your PD'.

My diagnosis remains 'possible PD'.

While I was better once I was back on meds, I was also as Jaye has described, it took months to get back to where I had been. I can only be very grateful to this doctor, who I had never seen before. If I had gone through the entire 2 week washout I dread to think how things would have been. I had always right from the beginning experienced wearing of and wearing on symptoms, it was not until 2008 and the advent of a wonderful PD nurse that these were recognized and my medication regime changed to try and sort them out. I still have these effects, they are much less. More importantly the addition of entacapone improved me significantly. I have often thought 'why she could see things in me that my doctors could not see........'

I too wondered about the NMS thing. An after effect of this experience that has not gone away, is that if I am ever very low on medication, I have a lot of difficulty with body temperature regulation - no matter what the ambient temperature is, I get overheated. This is completely contrary to how I usually am, which is exactly the opposite. My feeling is that the experience in some way sensitized me to levodopa in a way that I had not been before.

Back to your situation. I would seek a second opinion. This is a powerful drug, it does not seem to me that you are taking a phenomenally big amount of it. A bit more than doctors now would advise perhaps, but in the past many patients were on much higher doses. It is just that there is a higher level of awareness now about l-dopa and what it can do, and doctors are cautious. That level of awareness, I surmise, does not extend to getting patients off medication, or what the aftermath could potentially be.

One of the big issues for many of us on medication is how we are sometimes close to normality, and this can be so perplexing that we can even doubt we have PD ourselves. This is not a feeling that can be relied on, it is our version of the phantom leg. We look normal, we feel normal, but the next time we wear off we know we are not.

Take care, and be very cautious. And please take the best advice you can. This is not a journey you want to take in the dark. And you need to be able to get back to where you were fast, if things start to fall apart.

Lindy
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Unread 06-13-2010, 07:50 AM   #6
reverett123
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...when I first suggested compiling some of these posts as a project and which gradually morphed into the current efforts as some of you took it to heart, it was things like these experiences that I had in mind.

One of the complications was the problem of publishing postings from the forum without the permission of the author. Since so many of the authors were no longer available, that turned into a roadblock. However, I think it would be invaluable to have some of these gathered in one thread to print out for our individual doctors when then are contemplating something like this. And since we quote each other in our replies all the time, I don't think that there are any legal questions for NT or any of us so long as no publication is involved.

I am thinking about a few stickies added in a sort of FAQ arrangement such as:

"My doctor is suggesting a major change in my medications - what has been the patient's experience?"

"I am going into the hospital for unrelated reasons - what should my doctor and the nursing staff know about PD?"

"A recent change seems to have made a major difference in my symptoms- "

That's still not quite right, but the idea is that any of us could go into the thread and print out the posts relevant to our situation. A good doc would be glad to have the info and a bad doc would be put on notice, at least.

Any thoughts?
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Unread 06-14-2010, 12:49 AM   #7
michael7733
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Default Auntie Jaye

The only way you can "Never let 'em see you sweat." is by never sweating, and that is unhealthy.

Who has or had Neuroleptc Malignant syndrome? Are they still alive? Are they in the hospital in intensive care. Were they suddenly taken off their anti-psychotic drugs or their pd meds? Is the doctor going to pay for your stay in ICU or possibly your stay in a copper-toned coffin in a local cemetery,or is there a new variety of money-tree branch growing somewhere?

On the other hand, yah veh deva deva , perhaps you will only experience anxiety and claustrophobia on a cellular level as all of your cells begin to scream, "LET ME OUT OF HERE!" Or perhaps it is the frozen stupor you are looking forward to. And to think I once, no twice did this to myself.
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