I was diagnosed about 3 yrs ago. The carbodpa/levodopa has never worked even with increases in the dose. I wanted to get a second opinion by a new dr. that just started in my town and is young and has new ideas. My old neurologist has talked to the new one about me, but won't let me see him. I can't even reach the new one by phone, plus his office won't call me back when I leave messages. I can hardly walk now.
I think it very unlikely that your neurologist doesn't care that you are enduring severe PD symptoms, but however much he cares that doesn't mean he can solve them all. All the same, a second opinion can't possibly hurt either you or him; so go back to your PCP and keep pushing for the referral.
Two caveats: #1, you will have to be patient, polite and persistent; and #2 - be careful, because it may be that the second opinion will be a dead end, telling you only that everything possible for you as an individual is already being done; and that could be a crushing disappointment.
Maybe if you provide more details you can get some suggestions on how to proceed.
You need to talk to your GP and ask him/her for a referral for a second opinion. Even here in Canada, where you need a referral from your GP, you are allowed to request a second opinion. Especially if the treatment you are receiving is not working.
Other treatment options need to be explored. Be firm with your family doctor, put your concerns in writing and give them a time line of when you expect your referral for a second opinion.
What is the issue? Tremors? I could tell when it was near mom’s time to take her dosage because of her tremors. Have you tried home health physical therapy and occupational therapy? It really helped mom with gaining more strength and having better balance. The exercises were geared specifically for those dealing with symptoms of Parkinson’s disease.
Do you mind sharing your age? After a certain age they won’t consider deep stimulation. I know a few people who had had that treatment. Sometimes it helps but it isn’t foolproof. I know one person it did not help at all. The others were more responsive to it. It just depends on the situation. You may not even be a possible candidate for it.
Still, I would not hesitate to see another doctor if you are not comfortable with this doctor. You deserve to have your questions answered. Have your primary care doctor send you to a new doctor.
please explain this to us.
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I would contact my insurance company and find out how you get care if the old doctor is not welcoming a second opinion, HUGE RED FLAG and the only other specialist in town is cowing to the old doctor? I would file a complaint against him, I believe that a good doctor welcomes a second opinion and the chance to learn.
Best of luck getting this sorted out so you can see a different doctor.
Financially, maybe the DBS is not covered by your insurance?
Going back to your neurologist may help if he could explain things to you. Trying newer or different medications may be within the doctor's purview and expertise.
I would not try to get around your neurologist by using your PCP to "refer" you.
This is a specialty treatment you are seeking. Did your neurologist explain the medical to you?
I agree with you, seeking a second opinion would be a good idea. Maybe you were misdiagnosed, or now distrust your neurologist? Can you get an insurance waiver to see an entirely different neurologist than the two you have mentioned, even going out of town? Maybe one who is connected to a teaching hospital, movement disorders clinic, or neuropsychiatrist able to diagnose? UCLA in Los Angeles CA has a renown clinic. It is not unusual for patients to travel to different states to see the "real" specialists.
Unfortunately, money can be the deciding factor.
You said (about the two neurologists?): "They are not partners but work in the same office building. My PCP sent a referral to the new drs. office and I guess he went to see the old dr and asked him about me."
When I said : "I would not try to get around your neurologist by using your PCP to refer you", what I meant has nothing to do with "referrals" per say.
A lot of good medicine has been done by doctors in the same building.
Your old neurologist just did you a huge favor by getting a free consult on your behalf from the "new" neurologist. Or was it visa versa, no matter. If you want to break up this friendly tradition between doctors and get your way by seeing his colleague instead of following instructions and returning to the old neuro, then you will definitely cause trouble and not be well served.
If you return to the old doc, he may agree and release your care to the new doc. It is protocol...one guy out of respect will not steal another doctor's patients.
If you decide to see an entirely different neuro in another location, then the referral from your PCP would be required in that case.
Disclaimer, imo, worked in doctor's offices, not an expert, but have experience.