Here’s why I’m asking…
I’m 56. I’ve had PD for 13 years now. Over the years as it’s progressed, my neurologists solution to all of my Parkinson’s issues has been l-dopa.
Tremors getting worse? Take more l-dopa.
Can’t sleep at night? Take more l-dopa.
Intense muscle pain? Take more l-dopa.
I’ve been on 2,400 mg of l-dopa a day. Plus 600 mg of cabidopa a day.
For the last couple of years my PD nurses have been saying “That’s a helluva high dose.”
Until about 3 months ago, my neurologists response was “What do they know? If you need it you need it.”
But then I started to have painful pins and needles and electric shocks in my feet. At first my neurologist ignored this. So I went to my GP. She ordered basic blood tests. Nothing found. She orders more detailed tests.
Suddenly my neurologist steps in and takes over. Long story short it’s peripheral neuropathy.
And here’s the kicker… The peripheral neuropathy is caused by in the l-dopa!
What does my neurologist do? Phones me and tells me to cut the l-dopa down and take it less frequently. I’ve crunched the numbers and he’s looking to cut my l-dopa by over half!
I reduced by l-dopa for about 4 days a few days ago. It was a living hell. Muscle pain like you won’t believe. Can’t stand, sit, or lie for more than five minutes. Sit…. stand… sit… stand… lie… sit… stand… It goes on and on and on.
And the l-dopa was failing more often.
I couldn’t take it any longer and returned to my old dose.
Now, at the same time as all this, I’ve been jumping through hoops to see if I’m suitable for DBS.
The next hoop is the 12-hour dopamine challenge. At midnight on the day of the challenge, I’ve to stop all l-dopa at midnight. But the challenge doesn’t start until 9:30am at the hospital.
I’ve got to make it through the night with little sleep, intense muscle pain, and a two hour car journey before the test begins. And then I’ve got another 12 hours of the same thing in the hospital.
After the four days of hell with slashing my l-dopa in half, I was worried about how I’d cope on the day of the 12-hour challenge with absolutely no l-dopa.
I emailed the hospital where I’m taking the challenge. I told them about my concerns and asked basic questions about the day.
In a one paragraph response I was told “This is the most important (and essential test) for determining whether a patient is suitable for DBS” and “We recognise that this can be challenging for patients.”
That was it. No suggestions. No alternative medications to ease the pain.
In fact, the only time I was given any pain relief was when the muscle pain was so bad my right leg couldn’t support me and I end up in A&E.
Has anybody else had a similar experience? Is l-dopa the neurologists only option? Or have you been offered alternative medicines for muscle pain, etc?