Originally Posted by Conductor71

Hi to our newbs!

Definitely keep your eye on Ceregene. Neurotrophics are closest we may come to a cure, imho. The NIH and Genzyme are also conducting similar trials.

Okay here is my lengthy reply to you both. I am sure you will get other opinions but I just set forth the facts and the important things to consider. Hope it helps! BTW, I can provide research to back everything I post, so just ask if you want it...

Unfortunately, I was started on drugs day one of diagnosis after five years of being treated for Essential Tremor, so I never even questioned the meds, at that point I just wanted relief and normalcy. I was far too trusting. Looking back I wish I had started with amino acid replacement (levodopa precursors), mucuna pruriens (plant source of dopamine), and intense exercise. However it may not have been enough symptom control while still working, so who knows? You will find it is all largely trial and error.

Whatever you choose you need to think first about how symptomatic you can tolerate being. If you don't have to hide your condition, you have more options. Likely the doctor will want to start you on agonists, but although they alone do not cause the dreaded "D" word, they do cause personality changes akin to Obsessive Compulsive and Bi-polar like disorders.

There are things neurologists do not readily share about Mirapex or Sinemet. Agonists do not provide as good a symptom control as Levodopa, so most likely you will be on a high dose sooner than later. That commonly causes hallucinations. For me, starting Sinemet early was an easy decision because it totally alleviates my symptoms and on just that I felt most normal and my best. I also feel like Sinemet is the devil I know whereas the adverse effects of agonists are just now starting to reveal themselves.

Lastly, the dyskinesia fear mongering is really over the top and the common belief that levodopa only works for five years is just false. Many people do fine with it long term. Dyskinesia is a temporary effect of having taken too much levodopa; it is not a constant state. In my PD circles, I have enountered maybe 5 people who had out of control dyskinesia and that is over a period of 7 years.

However, I have met too many people who are worse after DBS. In my book 1 botched DBS wipes out like 20 successes. If it were a matter of improving vs. baseline then bring on the wires! It is far too risky. It is, in my opinion, a highly invasive way to make up for the addictive effects of Sinemet. It was also not even necessary in that an intestinal pump delivery system for levodopa already existed and Medtronic could easily have developed it, so right off the bat, I question the whole concept of DBS. Keep in mind there is a Duodopa pump system that we hope/think will be approve by the FDA this year. It seems a far superior treatment and has been available in Europe for like 15 years.

After two years of trying at least 10 different PD meds in varying combos, my doctor is pushing DBS. I am in my 40's and have a child at home. I am applying to clinical trials either neurotrophic factors, or Pico Tesla Magnetic fields. DBS is a last resort; I will go on a drug holiday before I got that route.
Be wary of the DBS promotion early on; there is a trend in promoting it in younger patients and many are doing it. It is scary; there is conflicting research on its neuroprotective potential; they cannot even figure out how it works let alone determine it slows progression. Plus, the few studies I have seen were totally biased with authors disclosing ties to Medtronic. I will leave you with this article:


Management of Referred Deep Brain Stimulation Failures
A Retrospective Analysis From 2 Movement Disorders Centers

Laura