Hi All,

I decided to endure and follow through with a new neurologist who required that I come in to see him after a 12 hour drug washout. I was frightened that I would end up entirely akinetic or shaking from head to toe in some sort of neuroleptic shock.

Oddly enough...I ended up feeling better than I do then when wearing off meds!! It was odd to note that I have slowness, rigidity, and a little gait/postural change when in between meds -in other words, I move a little like Quasi Modo. Mind you this is 3 hours on a good day! Yet, I take no drugs for 12 hours and have absolutely no bradykinesia, no stiffness, no gait change- only my tremor and some mild foot dystonia which cleared up by the time I got into the doctor office- in fact I'd say I aced the walking test.

With all the new stuff going on my focus was on changing meds; I forgot to ask the doctor about this phenomenon. Has anyone else experienced this before? Why in the world does this happen? Basically, my two symptoms that were obvious after the washout were consistent with how I presented to the neuro six years ago- is this what happens? It goes along with my belief that the meds factor largely into the wearing off severity and that it is not entirely disease progression. If things had progressed that much for me surely I would have been more symptomatic after that long with no drugs, right?

Well, I was frightened but survived and feel better in the end that I think it gave me a more accurate baseline or staging. Not pleasant but helpful to know this.

Laura

Laura,
I had 5 days in hospital approx 2 years ago out of a planned 2 weeks washout, the first 24-36 hours was very similar to what you describe, except that I have very little tremor anyway. By the time I got into the third day the change was quite dramatic, though oddly I did not feel it, in fact I felt more myself - but that was cognitively, emotionally. Physically was a completely different matter, masked face, very slow, with increasing rigidity, and posture really changed. Friends who visited were shocked by the difference, as was my son.

No explanation was given for that 'good' patch. My take on it is that wearing off and wearing on can actually feel somewhat worse than the underlying PD - by worse I mean more noticeable and uncomfortable. In addition to this there is residual storage of dopamine - and it is only when this starts to be depleted that the PD symptoms return in full. I would think that the longer you have PD the shorter this grace period would become as the capacity for storing dopamine decrease.

The worsening of symptoms when on replacement therapies can be due to fluctuating levels of dopamine. There are others who have experienced this.... I agree with you that a lot of discomfort that we may ascribe to progression can be meds related. I too returned to a similar state to what I was at dx, though I suspect that if the washout had lasted longer I would have been able to see more progression. On the other hand, I tried to get by on a lower daily intake of sinemet once I got home, and felt a lot lot worse, so I guess the maintenance dose was appropriate.....

One of my personal hates where meds are concerned is the wearing off and on, and the feeling of never being quite "myself".......... a treatment that restored that AND helped reduce symptoms is something I would give my eye teeth for!

Lindy