 |
 |
COMTAN200mg May extend the 'on' time if taken with the Sinemet. Have a Great Day Bill ----- Original Message ----- From: Robert Johnston To: [log in to unmask] Sent: Friday, December 06, 2002 10:30 PM Subject: PD symptoms exacerbated by chemotherapy Hi. This is my first post to the list so I'll briefly describe my background before inquiring for advice on a problem I'm having. I'm 44 years old. I start noticing what I later realized were symptoms of Parkinsonism probably in late 1998. By April 2001 I had figured out on my own that I probably had early onset PD. My doctor eventually called around to make an appointment with a Neurologist and the best he could do was set a date six months down the road in December! I was officially diagnosed in November, only after I check myself into emergency suffering from prolonged insomnia on top of the painful rigidity, maddening slowness, and foot dragging. There was some confusion as to what my problem was. First, I didn't have a resting tremor and my gait disorder seemed extreme in relations to my other symptoms. The doctors at the hospital gave me a trial dose of Sinemet 100/50 3 times daily. It didn't seem to work. On February 4th 2002 I spent 15 minutes with a movement disorder specialist at Toronto Western who perfunctorily proclaimed I had progressive sub nuclear palsy (PSP) ad sent me of with a prescription for 1500 tabs of Sinemet 100/50 with 14 repeats! Of course, Sinemet is not known to be particularly effective for PSP. For this reason and concerns about just toxifying myself with high dose (12 tabs daily) Sinemet, I held of until June 24th before filling the prescription. I ramped up the dose over about 2 weeks to 5.5 tabs a day and had miraculous results! I can only think that at 3 tabs a day I hadn't reached a threshold where the enough L-dopa was reaching my brain. Or, possibly, the heavy duty anti-oxidant regimen, including IV glutathione I had been taking since April had primed me for a better response to Sinemet. For months I had been almost completely house bound and debilitated to the extent that the only comfortable place was lying flat in my back immobilize or in an arm chair as still as the Sphinx. Less than a week after my June 24th startup with Sinemet I was out on my bicycle again. Typing at near normal speed and soon able to play piano again. The Sinemet became effective at 4.5 tabs a day and I struck a balance between fidgetyness (too much ) and the symptoms I mentioned at 5.5 -6 tabs daily. For three months it was relatively smooth sailing again. Back on my bike I could pedal 20-30 kms some days, put up my hammock on Cherry Beach or Toronto Island and be completely relaxed and at ease with my body again. As cruel fate would have it a few days after my miraculous response to Sinemet a lump started to grow on my parotid gland. First diagnosed August 16th by an ENT doctor with a tone of absolute certainty as a benign Warthins tumor, I was advised to shop carefully for a surgeon who could remove the tumor without severing facial nerves. Again, interminable waits for appointments. By the time I got to Princess Margaret Hospital in October and saw a head and neck surgeon, the lump was the size of a soft ball! Then I was told it was Large B-cell non-Hodgkins lymphoma. NOW I'M IN A CRISIS! Since starting CHOP chemotherapy on November 15th, I've been going through hell with my PD symptoms. Response to Sinemet is highly unpredictable. The effect when the Sinemet is "on" is highly variably and often agitated by slight diskynesis (fidgety toes and fingers). I often crash well before I am due for my next dose. Previous to commencing chemotherapy, a single 100/50 tab or even half a tab would be enough to get me through the night with just tolerable amount of stiffness before my morning dose kicked in. Now, despite taking a sleeping pill after a tab of Sinemet, I wake up 4 hours later, quite rigid, and have to take a second tab to get back to sleep - if I manage to get much sleep at all the second half of the night. The neurologist I see is not of a very inquiring mind and has a formulaic approach tomonthsment. His defensive response to difficult questions is, "It's not my area of expertise." The oncologist are completely unfamiliar with any PD patients undergoing chemotherapy; therefore they have no idea what might be happening in my case. I'm told there is no neurologist on staff at P.M. Hospital and to arrange an appointment takes six mpnths The questions I have are: 1. Does anyone know of studies or case reports dealing with how PD patients may experience special complications undergoing chemotherapy? 2. Has anyone on the list been both on PD medication and undergone chemotherapy? 3. Why are Neurologists so hard to come by? If one needs n MD therapist or a gynecologist it's not so hard to do. Is it not possible to find a Neurologists who sees patients regularly in their private office? Regards, Robert ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn