Should I ask for a consultatuon with a Neurologist?

[Court]

At the moment I see a Parkinsons Specialist but I have noticed that most people on the site see a Neurologist. I have never seen a Neurologist and wonder if I should ask to see one. I am not sure what the difference between a Parkinsons Specialist and a Neurologist is. As the Unit I attend comes under Department for the Elderly, I do not think of myself as elderly, but I appreciate that I am, I wonder whether I should ask for a referral.

I have never been offered any scans. I was diagnosed by methods such as touching finger to my nose. walking, tremor etc. I know I have Parkinsons, but wonder whether I am getting the best care available. How do I find a good Neurologist, but more to the point is is worth it?

[Dennis]

Do I understand you have not had a brain scan, brain mri, or the other test dealing with your brain and body. Do you live near a major clinic like Mayo?

if all was done to you were the simple finger, nose, feet touching, walking, then if it were me I would dig a little deeper in the knowledge and examinations concerning PD. ~Dennis

[Court in reply to Dennis]

No, I live in the UK. There is a Neurology Centre but it is quite away from where I live.

[drew410]

I see a neurologist who specialises in Parkinson's. I don't think it matters who you see as long as they are getting it right. After all, they are just labels which may vary from area to area. Do you feel you should feel better/different? I have had CT, MRI and DAT scans and I think the only reason for that was that I was perhaps borderline PD at the start. Not all hospitals have the facilities though. A bit of a lottery. My unit is called Medicine for The Elderly. I'm sure they could have come up with a better name! Shakey Wakey? Mmmm.....

[Court in reply to drew410]

Yes, Medicine for the Elderly does not actually inspire one does it? I don't know what I expect to gain for seeing a Neurologist, just wondered if I may be offered scans - but doubt they would provide any better treatment.

[Hikoi in reply to Court]

I am afraid it wont make any difference to your treatment Court, its just diagnostic. ( I was reading today that a scan is about 3000 dollars. The injection alone is 1500. But at a talk i attended recently much higher figures were quoted ). If you are ok on your current medication that is good. Long may it last!

[Owenbob in reply to drew410]

Yes. My PD specialist is a neurologist, but specializes is Parkinsons

[wordworks2001]

Until the DATSCAN was approved to diagnose PD, there was no definitive test for the disease. Some doctors don't even agree it is a disease, they call it a syndrome. When I was diagnosed in 1998, my primary care physician knew I had PD but sent me to a neurologist who specialized in PD to verify it. The neurologist did an EEG. I never had a brain scan or MRI. Since I always responded well to the medication (Sinemet) I was prescribed, until the past couple of years when the wearing off problem began, I assumed I have PD. My current neurologist keeps up to date and is very thorough when he examines me. I am happy with him and that is the main reason I keep him.

[Court in reply to wordworks2001]

I am not sure what to expect from my consultation which seems to consist of a general chat no examination. Always asked how I am coping but do not come away feeling the visit has achieved much. Maybe I expect too much.

[lmbanni]

This answer is from my husband.

I have seen several doctors because I was in disblief.I have been to a professor from a University who is a nerologist & specializes in movement disorders. He did not do an MRI and was able to diagnose me, with PD. He told me, "if nothing shows up in the MRI then you have PD because PD does not show signs on the brain. If something does show up than there is another type of problem." I also have been to another nerogogist which gave the same diagnosis. I have been to another DR who was a movement disorder specialist who did the MRI, EMG and physical exam. He also stated I have PD. I went to another professor and movement disorder specalist and he also said I had PD, He did an MRI, cat scan and exam.

They can only make you comfortable and not much else. Instead of only making us feel comfortable with medication. I wish they would get together and find a cure for this horrible disease! It has stolen my life away! I will not let it take more with out a fight! They need to find a cure now! If you have another movement disorder other then PD Sinemet will not work on your symptoms. I was told this by most of the doctors I have seen. If you feel better with the sinemet then you are having the best treatment that can be done for you. When this stops working then they will want to do DBS.

[jeaniegal]

I was diagnosed with PD through physical examination and never had any particular brain tests. When I googled PD I could see that I was the poster child, I did not need a doctor tell me. I investigated on the web decided I wanted to start with Azilect rather than levodopa carbidopa, and I'm doing okay. I think you have to be your own best advocate. I belong to an HMO and they do not cover Azilect because of the expense. They wanted to use levodopa carbidopa because it is cheap . There isn't really much that can be done for PD. Medications to control the symptoms and then deep brain stimulation when they stop working.

I would recommend looking at the Michael J Fox website and joining a study. I am in the pioglitazone study, about an hour and a half from my house. But the study gets me around other people with Parkinson's and other experts in the field. Maybe the pioglitazone will help me but maybe I'm on the placebo. I get a massage, see an acupuncturist, workout with a trainer, attend a support group and hang out with you guys on the web. I cut my work back to part-time. I try to keep a positive attitude, and I try to make my life count by doing something good for someone else every day.

[Court in reply to jeaniegal]

Thanks for both the above. I am not in denial about having Parkinsons. Quite the opposite, in fact. I just want to be sure I am getting the best treatment available. At the moment Stalevo and Requip seem to be suiting me. So many people seem to see a Neurologist, I just wondered how different one was from the Specialist, or usually other member of team, I see.

[Court in reply to Court]

I have just completed survey with 23andme and will await response to this. Will look further at the Michael J Fox site. By the way I live in the UK.

[shasha in reply to Court]

so have i court - and i now await my spit test kit

[cabbagecottage]

We are under the Care of the Elderly who is interested in Parkinsons ?????

[emswife]

I see a PD Specilaist nurse who is really accesible. She talks things thru rather than just scriblling nonsense on a pad. My neurologist is ok, Ive seen him twice in 2 and a half years. But the Specilaist nurse is really good at anwering questions in my layman's language. She's a prescribing nurse & advises me on medication. She has time to listen. She's a gem who even took me seriously when I said I wanted to go on a tobogan on my 60th birthday! She uppped my meds,(but sadly it didnt snow)

[hollyb2]

I was being seen by a neurologist for my migrains but when the pd began they refered me to a tremor specialist I am 46 and I asked him why the change in doctors he stated that there really was no difference other then the fact that he only cares for patients with tremor disorders, which as you know pd is one of those . The most important thing is that you like and trust your doctor.

[michaela13]

I believe a pd specialist must first be a neurologist, then specializes in movement disorder, no? I was given a dat scan and my neurologist saw the lack of dopamine. But i think if you are responding to med, thats good.