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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.

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Lootsa, as a retired ICU nurse who was married to a medical practitioner, I'm sure you understand better than I do that one doctor cannot simply take over a patient's care when he knows that another doctor is treating her for the same condition. It would be incredibly unprofessional for the Bright Young Thing to agree to see you without the courtesy of a referral either from the Old Timer or from your PCP.

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.
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What are you taking? Sinamet? That’s what my mom took. Mom would adjust the dosage at times. Mom was taking Requip for awhile too but she has edema and that particular drug made the edema worse for her. So she was taken off of that drug.

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.
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Medically, maybe you are not a candidate for DBS (deep brain stimulation) after several subarachnoid bleeds, a subdural hematoma, and spinal cord tumor?

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.
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Sendhelp Dec 17, 2019
Lootsa,
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.
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I would call and get my medical records, by law they are your property and then schedule an appointment with the new doctor.

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.
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Are you outside of the US? I can understand needing a referral from your GP, if you are in Canada the UK or other countries.

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.
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worriedinCali Dec 16, 2019
In the US, it’s extremely common to need a referral to see any kind of specialist.
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also I can't get theu to the new dr. I have left messages with the switchboard to have someone in his ofice call me. I even wrote him letter thinking maybe that woul get to him, but no luck so I give up
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the old Ds. office told me that he talked to the new dr. about me. I got a call from someone at the new drs office saaying he wouldn't see me until I went back to the old drs. office which I did. I asked him about DBS and he said if the Carbo/Levo dopa didn't work thaat DBS wouldn't work either. According to everything i've read that DBS might work when the meds don't work. The old dr was the only parkinsons specialist in town untill this new one started several months ago. I am a retired ICUnurse having worked in ICU over 40 yrs, so I know a little medicine. I was also married to an OB/GYNE dr. When he finished his residency he wanted to set up a practice in a small town, but the other Ob/Gyne Drs didn't want a new one in town. 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. Now I can't get thru to his office and I am not going back to the old drs office. I will just continue taking the Carbo/levodopa. The old dr told me what terrible things would happen to me if I stopped taking it. It has never worked. I can't afford to go out of my insurance network since I live on SS and a small nurse's pension. I am also raising my 2 teenage grandchildren that I have custody of. Thanks for replying to my question. I guess I'll just keep keeping on. My biggest fear is falling and breaking a hip or hitting my head. In May I fell down some outside steps and landed head first onto my deck. My grandson found me unconscous and called 911. I wound up with several subarachnoid bleeds and a subdural hematoma in my brain. They also discovered a spinal cord tumor while doing MRI's. They did surgery on my spine then I developed 2 blood clots (PE"S) in my left lung and one in my right lung. I am just lucky to be alive, but I wish I could walk better. The old dr doesn't seem to care.
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Call your insurance company and ask if they pay for second opinions. If so, no doctor can keep u from contacting another. Maybe you shouldn't have told the Dr. that u were going for a second opinion. Some Drs are uptight about 2nd opinions.
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I agree with lealonnie....how could he prevent you from seeing any doctor you choose?

please explain this to us.
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I'm confused..........how can your doctor prevent you from seeing another doctor of your choice? How do you know the old neurologist spoke to the new one about you, but 'won't let you see him'? That makes no sense to me.......at all.

Maybe if you provide more details you can get some suggestions on how to proceed.
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