Posted 12 August 2011 - 11:38 AM
I have copied your questions so it will be easier for me to answer them piece by piece. I will tell you that I can feel your frustration in your writing. It is a frustration that many of us with PD have felt at one time or another. The more we get acquainted with this disease and our body, the less the frustration becomes.
Thanks for your useful work. I was diagnosed in 2005, took no meds til 2008, when I noticed that taking Flexeril for a back problem relieved the limp I was beginning to acquire from PD. Started on Mirapex, not help til my doctor added Sinemet. I gained 10 pounds, lost emotional affect, got blurry vision, but stopped limping and shaking. Bad trade-offs; doc had no suggestions. In March this year, I switched to generic Mirapex, and shortly after that had an allergic reaction to some leftover food (hives, short of breath), went to ER for IV benadryl. Mirapex seemed to cause a repeat of symptoms, including diffiulty breathing. After several subsequent ER visits, my neurologist suggested changing to Requip. Started on a very low dose (1/4 mg, 3 x a day), no effect. Worked up to 5 mg, 3 x a day, plus 2 mg Sinemet, 3 x a day. Had low blood pressure, chest pains, back to ER. Now trying long-acting Requip 2 mg., 3 - 4 times a day, plus Sinemet. Stopped fainting. Still bloated, fat, tired, dehydrated (hence blurry vision; stopped driving at night), emotionally flat, alternately too sleepy, and sleepless at night. 2 questions: 1. Any advice? (I drink water; too tired to exercise.)
You have definitely had some real ups and downs in your therapy. I do see a glimmer of hope in the chaos you went through. It appears that the sinemet did seem to give you the most hope. The good thing about that is, sinemet comes in about about 8 different strengths AND also comes in long and short acting tablets. This allows a patient to get to a "close" dose faster than other meds. From there, it allows the Dr to get even close to a precise dosing schedule for you? Trust me, close enough makes a big difference for all of us. I would probably talk to your Dr about trying this Med schedule first. Some Dr's shy away from starting tis first because their is a belief that this should be held off as a "last resort" medication because they feel it may not be effective later if it is used too early. The more modern thinking is "Why wait to improve your quality of life."
The muscle spasm issue is a tough to define for PD patients. The Dr first needs to figure out if it is just a localized spasm due to an injury OR, is it the start of dystonia (a PD symptom that causes massive and multiple spasms usually on theatients dominant side) which can start small and could possibly end up affecting the whole body. A "regular" Dr will usually see it as a localized spasm and prescribe a medication aimed toward healing that type of spasm. A neurologist or MDS would probably look at it as a possible start of customize and prescribe a muscle relaxer specifically aimed at that type of spasm. There are 2 types of muscle relaxer that are used for customize, those are baclofen and tizanidine. In basic terms, these work by acting on a chemical from the spinal cord out toward the muscles, where as regular muscle relaxer work by working on the chemicals in the brain to relieve the spasm. Baclofen and tizanidine work very well on spasms due to PD, MS, and spinal cord injury patients. This would be the second thing I would discuss wit your Dr.
2. I have 2 neurologists and 1 primary care doc at Kaiser, all good smart caring people. None of them is putting this together; for chest pain symptoms, which I realize from your site is most likely a drug-related problem (I have no heart problems) primary care doc is sending me for chest X-Rays and a stress test; neurologist sending me to allergy doc! Neurologists won't talk to primary care doc; neurologist won't talk to all vergy doc. I feel like a co-pay automaton. Is there a better system somewhere, or is online problem-solving the best available at the moment?
This is a problem many people, not just PD patients have. Trying to get all of your Dr's to communicate is a very tough task all to itself. In my experience, good Dr's know good Dr's. With this in mind, the most important key is to find an open minded primary care Dr who will listen. Oddly enough, a Google search can help you with the. If you search "good primary care Dr in your area, there are umany websites that rate Dr's based upon many factors. Also, word of mouth is another good option. Many people will tell you who is good or who is not so good. One last way to find out, ask a pharmacist. In fact, ask many pharmacists in the same area. As pharmacists, we have contact with hundreds of Dr's in a short period of time. Trust me, we can tell the the good and not so good ones.
Once you get that good primary care Dr, the rest usually goes from there. Like I said, good Dr's now good Dr's. A good Dr also realizes their limitations, and will refer you to a specialist when they see the issue may be out of their realm of practice.
The best practice I have with my Dr's is: once you see 1 Dr, make sure they FAX their notes too ALLofyour other Dr's. This is made very easy now because many hospitals are all online. If one Dr puts in notes, that goes into your online file. This file can then be pulled up by every Dr you see who is affiliated with this hospital. All notes, medications, MRI's, CAT scans, blood tests, etc....
I hope this helps. If you need anything else, let me know.
Best of health,
Mark R. Comes R.Ph.
Board Certified Pharmacist,
Medical Board Member, & Consultant.
National Parkinson Foundation
"Ask The Pharmacist"