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Topic Treatment Update - Second medical opinion Go to previous topic Go to next topic Go to higher level

By Knoosy On 2013.01.20 22:40
Previously my friend's medical team urged him to have immediate spine surgery followed by DBS. They also kept adding different prescriptions such as sleeping pills, more sinemet and seroquel. We felt it was getting too much and had concerns about the surgeries. So we went to see another team of doctors. Our feelings were confirmed. The spine surgery is not immediately necessary. Even though there is spinal scoliosis, we were told that lots of people have arthritis and don't have to have surgery and that the leaning is parkinsonian. The meds were also reduced. They may even have contributed to the leaning. If the new and reduced pill regimen works, maybe he won't even need DBS. We were so excited and my friend felt like he got his life back. The previous doctors scared him so much that he felt sicker than he really was. The resulting depression made him so slow that he thought he was constantly frozen. One must never underestimate the power of the mind and psychology. Always seek optimistic doctors. Their attitude alone is healing. Greetings to the Forum.

By Reflection On 2013.01.21 18:23
Thank you for updating us - I'm so very glad for you and your friend. Good for you for supporting him, and for standing strong.

By lurkingforacure On 2013.01.21 23:44
I am very relieved for you both:) Thank goodness you got a second opinion, that could not have worked out better.

Thank you for the update, and lesson!

By Knoosy On 2013.01.23 13:37
Thank you for your kind wishes and notes and you're very welcome for the updates. It's been a few days on the new drug regimen. One big change is that he was told to start the pills at 8 am or later in the morning. The other doctors told him to take the first dose at 5am only because years ago he told a doctor that he wakes up at 5 sometimes. This was never questioned. He would take the 5am dose which was also the biggest one of the day and go back to sleep basically with no benefit to his symptoms other than an increased amount of meds in his system. The new pill regimen starts at 8am and he now takes 250mg sinemet 4x a day instead of 200mg 8 x a day, a huge reduction and it actually seems to work better so far. No more comtan (Entecap). We were told that only works to push the sinemet for a very short time. He can chew an additional sinemet at nighttime or when he really needs it. He even seems to be leaning less. A significant change I noticed is more mental clarity but it all still has to be seen. We have another appointment in a month.

By parkinit On 2013.01.23 19:37
Knoosy -

So good to hear that things are better. Yes, the mind can do miraculous things - both good and bad.

I'm glad your PWP has YOU! You are a blessing to him.

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