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PD Progression


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#41 McCall

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Posted 25 February 2013 - 12:11 PM

It seems to me that if the Mirapex is deffinately stopping the tremors which you say it is, and that they came back with a fury during your Mirapex holliday, that you have the same answer as if you had taken Sinimet and it stopped the tremors.
Now due to the mental side affects of Mirapex, I would not let them give that to my husband PERIOD, nor any other of the Agonist drugs, since his compulsive behavior disorder actually started before any meds and before he was diagnosed even. So the thought of putting him on something likely to cause such behavior scares the LIFE right out of me.

Anyway I think you have already done your see if meds help test for potential diagnosis.

#42 Tallin

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Posted 02 March 2013 - 09:56 AM

I completely understand the issue of vagueness! I just got the diagnosis of parkinsonism (he said he wasn't sure if it was PD or another form though) two weeks ago. My first symptoms started 30 years ago. I have what he referred to as a "huge complicating factor". It kept me from seeking help for a long time. I was hit by a drunk driver at 20, and was unconscious for about 8-9 hours, and have some neck damage that lingers. Then, at 31, I was a passenger in a another very serious accident, where I was in and out of consciousness for about 24 hours, in intensive care. In my mid-twenties, between the two wrecks, I noticed the left side of my body 'felt funny'.- different than the other side. Over the next few years I developed a slight tremor in my left hand. I had the (then new tech) CAT scan, and some nerve tests, and the doctors told me I had a 'slight disturbance' in my left hand, but attributed it to the wreck, and so I tried not to worry about it. I tried once again when we moved to a smaller town and was treated like an hysterical female. Then the second wreck happened. Over the years after that, the tremor in my left hand continued to get slightly worse but so slowly that I barely noticed it. It would scare me, but I'd remind myself it was just the wrecks. Then about 8 years ago it got bad enough that I went to the GP in the small town I lived in at the time, and he did seem a bit concerned by the tremor, tested me for MS. It was negative, and I was dealing with a mentally and physically ill child, alone, so I just said 'thank goodness' and went back to more pressing things. I never put it together with the other things going on with me either. Then about 4 years ago, my left leg started the tremors and a feeling of weakness, and my knee wouldn't bend right (I went to an orthopaedic doc who xrayed it and said it looked fine) etc. Over the past two years, my right hand started a slight tremor, my left hand got much worse (I'm lefthanded too). Once I realized my head tremors when I turn it, I showed it to my GP now, and she got very concerned. She said it looked just like Parkinson's but that I needed to see neurologist because there were other things it could be. He did a cervical spine, and brain MRI and found nothing to explain it. He said the wrecks still complicate it, because we are just starting to understand how those kind of head injuries affect parkinsonism. Anyway, sorry for the long post. This is my first post here, and I'm really confused like you are Dave. Different complicating factors, but they make it confusing. I don't like not knowing worst of all. And I'm in the odd position of having been recently diagnosed for it when it's clear it really started decades ago. The wreck excused it long past when I'd have gotten serious about tracking it down, otherwise. I feel so lost with it all.

#43 Tallin

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Posted 02 March 2013 - 10:03 AM

PS - They have me on pramipexole 3x a day. He first tried to put me on something else, but I'd already been on Celexa for depression for several months, and they don't mix, so he switched it. I think that's the generic Mirapex/ It hasn't seemed to help yet, but then I just went up to the full dose on Wednesday.

#44 Daven

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Posted 02 March 2013 - 10:50 AM

Hi Tallin, sorry for the diagnosis. On the flip side, at least you can put a name to what's going on. I have discovered a few things in regards to Mirapex. First it does have to build up in your system to be truly effective. I'm finally taking the prescribed dose. It took me two months before I was willing to take the full dose during working hours. It makes me really tired. I've discovered that if I take Mirapex when I first get up in the morning, it'll just put me right back to sleep. I have adjusted my sleep and work schedule around this dam drug. I started getting up an hour earlier than I normally was. I arrive at work at 6:00 rather 7:30, the earlier commute means less traffic. It's amazing how much more energy I have during the day by shifting my schedule around a little. I still take all my prescriptions at the same time as before, just more awake when I do. I've accomplished twice the amount of work on this schedule over the last couple of weeks than I have over the last several months. I do pay a price in the evening after dinner where I end up passing out in a chair from complete exhaustion.

I hate having to take Mirapex and am hoping that when I get my second opinion, he'll have other suggestions. I'm going to ask both of these doctor's if I can get a DatScan. If I'm that difficult to diagnose, then maybe this test will shed some light on things or eliminate Parkinson's from the picture so I can concentrate on what else might be the cause of my problems.

Dave

#45 Rogerstar1

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Posted 02 March 2013 - 01:19 PM

Dave - It occurs to me that you choose to be undiagnosed by depriving your doctors (or they denying you?) the only inter vivos diagnostic means known to medical science - Sinemet. I submit every parkinsonian walking the earth today was subjected to this protocol either as the primary means of diagosis or confirming same based on an assessment of symtoms exhibited. Why would your case (or non case) be any different?

#46 rvl

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Posted 02 March 2013 - 02:34 PM

Wow, Little Town Guy thanks for this. I found your account very encouraging! DBS may be an option for me as I cannot tolerate most PD drugs. I began with a distinct r.hand tremor 2 years ago and apart from some stiffness have no other symtoms so far. I no longer have energy issues since reaching week 6 of being on Azilect. Also, I take Mirtazapine, as my movement disorder dr. approves the effect of this drug combo. Taking levo-cardopa resulted in 8 months of debilitating myoclonus for me but I have been free of that for almost a year now, by the grace of God. I have also been advised by my general neurologist to avoid foods with tyramine. This is to avoid a cardio emerg due to possible high blood pressure spikes from the Azilect alone and/or in combination with Mirtazapine. Overall, altho' my tremor is not yet much reduced, I am very happy with the energy boost I have experienced since being on Azilect. Long term benefits of Azilect slowing the progression of PD are still being studied. I am thankful to God for the quality of treatment I have been receiving here in western Canada!

#47 Daven

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Posted 02 March 2013 - 04:20 PM

Dave - It occurs to me that you choose to be undiagnosed by depriving your doctors (or they denying you?) the only inter vivos diagnostic means known to medical science - Sinemet. I submit every parkinsonian walking the earth today was subjected to this protocol either as the primary means of diagosis or confirming same based on an assessment of symtoms exhibited. Why would your case (or non case) be any different?


Roger, I have not chosen to be undiagnosed. Believe me, I want an answer. Have I somehow given the impression that I don't want an answer? My doctor is denying me that medication for reasons unbeknownst to me. He stated in my first appointment that he will not prescribe Sinemet to new patients. Last I checked, I am unable to prescribe prescription drugs to myself. I am not in the habit of telling my doctors what type of treatment I should receive. Maybe I should reconsider that position, but as of yet, I still rely on their expertise. If you can explain to me why he has chosen this path for me, I'm all ears. I recently got a copy of my records from this doctor and his notes reflect nothing but uncertainty as it pertains to me. He seems very focused on my peripheral neuropathy rather than the issue I'm seeing him for. This is why I have made an appointment with a second Doctor for a second opinion. I'm trying to be patient. Based on my research, I'm not the first person who had to wait through months and months of uncertainty in search of a diagnosis. In some cases, some of you have waited years. My plan is to stop taking the Mirapex several weeks prior to the second opinion Doctor so whatever symptoms I have can be seen.

Time will eventually tell what my problem is.

Edited by Tired, 02 March 2013 - 04:22 PM.


#48 christie

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Posted 02 March 2013 - 05:56 PM

My plan is to stop taking the Mirapex several weeks prior to the second opinion Doctor so whatever symptoms I have can be seen.

Time will eventually tell what my problem is.


Be careful with Mirapex. you should veeeeeeeeeeery slowly cut back on the dosage but not on your own. First, because it's risky. Second, because that's not the best way to get the answers you need. If you stop Mirapex completely you are likely to experience some withdrawal symptoms. Even if these symptoms are mild, they mimic the symptoms of PD. In that case you will never know if your symptoms are due to the underlying neurological disease or caused by dopamine agonist withdrawal.
My advice, for what it's worth, is to first visit the second doctor before doing anything drastic (like stopping mirapex) in order to discuss your worries with him. He may not need to see you off mirapex. Alternatively, you could contact the second doctor prior to the appointment and ask him if he would like to see you "on" mirapex or not. and to give you specific directions on how to cut back on the dosage before seeing him.

Edited by christie, 02 March 2013 - 05:58 PM.

English is not my first language !

#49 vipowitz

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Posted 02 March 2013 - 07:05 PM

Hi Roger,

with reference to your last post, are you suggesting that a levodopa trial can dictate a diagnosis differentiating parkinson's or parkinsonism ?

Edited by vipowitz, 02 March 2013 - 07:38 PM.


#50 Rogerstar1

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Posted 02 March 2013 - 08:11 PM

Vipowitz - No, I was not suggesting that. I had not understood that distinction to be an issue. The tenor of my previous filing in this thread (to say nothing of my spelling therein!) missed the mark, (widely) too, and for that I apologize, David.

best regards to you Dave and all who follow this forum from

Roger

#51 Tallin

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Posted 04 March 2013 - 06:34 AM

Thanks for the reply Dave. I am hoping with some time on the full dose it'll help more. It does seem to help with the tremors a bit already, during the day. But it's not consistent. Then again, I've only been on the full dose a few days. You nailed it when you said at least I had a name for what was going on - that's what I reminded myself over and over, waiting for that awful appointment - whatever it was, it had been there a long time, I was just giving it a name. I appreciate the hints with the Mirapex, too. My doc tried to prescribe something else, a newer medicine, but I don't remember the name. However, I got on Calexa for my depression about 5 months ago before I understood why I was experiencing it. The neurologist felt since it's been doing me good, continuing with that was more important...and you can't take both. So I ended up with pramipexole. I so understand your feelings, sometimes it's like finding myself in a weird (and unfortunate) new world. I don't think for a minute you don't want to know....because not knowing is horrible. I had the wrecks to blame it on, and so much in my life I had to deal with, it was easy then to just swallow the worry and try to ignore what was happening to me. I went 30 years without a diagnosis, so I have to wonder if unconsciously I knew better but just too scared and overwhelmed with my daughter's problems to face it, but I guess I'll never really know. But once my primary care doc saw it and told me it wasn't normal and it was serious, the not knowing became a horrible burden. I remember reading that some docs like to put off the Sinimet till later, when other things aren't working anymore, but I may have that confused...I garble memories sometimes! (Another thing that scared me for a long time, and I never even put it together with the tremors...there's a reason I'm not a doctor! LOL) Anyway, thanks for the reply. I'll experiment with the timing of my pills a little and see if that helps with my morning drowsiness (I have it too).




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