Quote:
Originally Posted by pkell
Laura,
...My mother-in-law as diagnosed with PD in about 1980 (though I have been told by my MDS it more likely MSA) but she was put in the hospital to take her off all meds and try starting back up one at a time. She walked into the hospital under her own steam and before she left her feet were frozen in a dystonic ballerina toe point. Ultimately her Achiles tendons had to be severed so she could sit in a wheel chair. Granted she was pretty bad off by that point but the rapid withdrawal of meds made a complete cripple of her.
Pam
|
Thank you all for sharing your thoughts and experiences. I honestly don't know what I'll do at this point.
I am concerned, as Pam cautioned, of having another akinetic crisis upon abruptly stopping meds- this happened to me when I had to come off all meds during pregnancy. Mind you, I was never even warned this might happen; I was scared out of my wits when I went from being mildly affected to not being able to move in bed at night. What is really bothersome is that over one year later, I discovered what this phenomenon was on my own- I still don't think my present neurologist knows this even exists.
I'm also concerned that my neurologist, despite his Ivy league education and years of research/publication on tremor never ordered a test for Wilson's Disease- especially since this is standard. Can WD be detected through an MRI? I did have that and perhaps he used that as a measure?
In the end, I'm not sure what to do. I'm not convinced that I need to be off meds for 12 hours; especially given how abruptly stopping them most likely will worsen my symptoms. It would invalidate any staging that might be done. Of course, then again, maybe he wants exaggerated symptoms to get a firm reading?
I'm torn between wanting what I want- what Carey has and knowing that this young doctor is the best I have available locally at this point.
Is it feasible to travel for a second opinion on course of treatment (I'm thinking of making an appointment somewhere like UMaryland) and then following up with a local neuro to oversee what has been decided upon? I thought this may work, but from what I am hearing, most neurologists won't simply oversee or manage a course of treatment set forth by a different doctor. Has anyone had any success in doing something like this?
Laura