On reflection, following my recent visit to the neurologist (previous post), it begins to feel as though I am actually a step backwards from where I was when I had a diagnosis of 'idiopathic PD'. Now I don't have that; just some vague 'Parkinsonism' whose origin is unknown and, it follows, whose best treatment is uncertain. Dr Rhys Davies commented that the trials of things like creatine (which I am taking since it isn't harmful and just might be helpful) may not have any effect on me since they are only known to have effects for 'proper' PD.
What I didn't think to say at the time was that my new vague diagnostic status implies that the PD drugs I am taking might not be the best - or even the right - ones for this peculiar and often painful neuromuscular condition. They may also have the negative effect of causing my serious insomnia. That they do have some beneficial effect I have little doubt since I have several times experimented with reducing or stopping them. I usually feel quite good for a day or so when I do these trials but then the pains increase and so do the tremors. So I go back on the drugs.
So where do I go from here? If, as Dr Davies said, pain specialists are unlikely to be able to help with this sort of pain, what can I do to move things along so that treatment is more effective than at present? And frankly, I'm stumped. Talking with my GP cousins a while back rather suggests that what I need for another opinion is not a specialist at all, but a 'generalist' physician who won't look at me with PD-tinted glasses. Indeed, she may see a patient suffering from something rather different which requires different drug treatment. But where do I find a general physician who can either corroborate my Parkinsonism status or suggest some other line which might be worth following?
Ideas welcomed!
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