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Topic picking our Doc Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2013.11.27 20:09
You or a loved one has Parkinson's Disease so Who do We pick to threat Us/Them? A Regular Neurologist or a Movement Disorder Specialist? Movement Disorder seems to be the popular Doctor and many say you need one. That is the patients choice and right to choose who they feel comfortable with. A good argument can be made for the MDS as they specialize in problems and diseases that impaired movement, are thought to be atop their field esp at teaching hospitals. What's to choose you may say. Sounds like they're the one's. A case for a regular Neurologist is they if current, they may view the disease as more than just movement disorder. Many make cases for the MDS so I'm just going to give some other gifts Parkinson's bestows upon Us that don't rank as motor symptoms.
Neuropsychiatric Symptoms; Depression, Anxiety, Apathy, Hallucination, delusions, illusions, delirium(may be drug induced), Dopaminergic dysregulation syndrome, Impulse control disorders.
Sleep disorders; REM sleep behaviour disorder(possibly per-motor symptom), excess daytime somnolence, narcolepsy type "sleep attacks", restless leg syndrome, periodic leg movements, insomnia, sleep disorder breathing, non-REM parasomnias(confused wandering).
Fatigue; central fatigue, peripheral fatigue,
Sensory Symptoms; pain, olfactory disturbance, hyposmia, functional anosmia, visual disturbance (blurred vision, diplopiimpaired contrast-sensitivity.
Autonomic dysfunction; bladder dysfunction(urgency, frequency, nocturia), sexual dysfunction(might be drug related), sweating abnormalities (hyperhydrosis), orthostatic hypotension.
Gastrointestinal Symptoms; dribbling of siliva, dysphagia-swallowing issues, agueusia-loss of taste, constipation, nausea, vomiting.
Dopaminergic Drug induced Behaviour; Hallucinations, psycosis, delusions, dopamine dysregulation syndrome, impulse control dysorder,
Dopaminergic drug induced other; ankle swelling, dyspnea-breathlessness, skin reactions, subcutaneous noduals, erythermatous skin problems.
Nonmotor Fluctuations; dysautonomia, cognitive?psychiatric, sensory/pain, visual blurring.
Other symptoms; weight loss, weight gain.

Again MDS deal with movement so they might not take the whole package into view or treatment I mean Their view is You came to them the get help with movement and that is the main concern right? It is difficult to pick either. Question the MDS, you are interviewing them to see if you want them taking care of you right? If they seem disinterested if you bring up a couple or non motor symptoms do you feel comfortable with entrusting them with your well being? Question the Neurologist about movement along with non-movement. Just tossing this out to better arm those changing Doctors or seeking a specialist. In the end it is up to you what you do with the information, ignore it, use it or toss it in the circular file. Just try to keep in mind they are lucky to have informed patients and caregivers to keep them on their toes and question things. But in the end it is truly Your choice! Take care, best of luck and hang in there

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By olpilot On 2013.11.28 00:08
Before my diagnosis I went to the top MDS at the university teaching hospital here. It was a truly wasted trip.I was at the time being treated for depression, and at the time unknown to me I had a cervical spinal stenosis, a pretty severe one. That caused a gate problem all its own, so that when I saw the MDS I didn't walk like a pwp is.supposed to walk, so that despite all the other pd symptoms, some still movement related, stiffness, slowness, depression was all I had. Her diagnosis was based on three steps in each direction. I did have some fasiculations so she sent me to an ALS specialist, he is the one who found the stenosis, sent me to the spinal surgical specialist who took care of that.

Six months of pt where the balance problems really shown themselves, getting worse not better they suggested I give up. No mention to the doctor I was way of balance, and falling. On a walking test I was rated as in danger of falling. We finally got a general neurologists at the clinic. I got in to see him, he did a couple of retests, .after a couple visits he sat my wife and I down and told us it wasn't MS, or ALS, my wife said what we thought it was, he said lets try sinimet, it worked, FINALLY WE KNEW, SOMEONE LISTENED. Ever since we have been seeing him. Found out after a year his father in law had Parkinson's, he was very familiar with the whole disease not just the way you moved.

Just like in meds, what works for one just isn't the same for another.

By jcoff012 On 2013.11.28 19:22
Carl is very excited to be changing to a new doctor, a neurologist who specializes in Parkinson's. We are going to be going to UCSF, to the Parkinson's Center there, on December 11. Why?

Well, since his diagnosis, he has seen two neurologists...one was very good, listened, but Carl and I moved two hundred miles to the south of our old home. He searched out a new neurologist in this area and found one who was supposed to be excellent. HOWEVER, in the past two years this February, he has seen Carl ONCE...he prescribed Requip and said he would monitor the dosage...He has as of this writing, not answered ANY of Carl's phone calls, has not seen him again...all he does is renew his prescription. Twice, Carl has been in severe back and shoulder pain...no solution, not even a callback. So...after trying to deal with this constant pain and non-monitoring of his health, Carl decided to seek another physician. We went to a PD Conference in San Francisco, where we heard this amazing neurologist speak about PD and the patient's right to excellent care. We sat with a table of his patients who raved about him, his staff, and his PD knowledge. PD is all he does. So, Carl went through the "hoops" and had a local general practitioner give him a referral to this new neuro. We are both extremely pleased.

Do we expect miracles? Of course not. As I have said in other posts, we have dealt with PD through the 22 years his mom had it, so we truly know the "end game". We also know that having a good doctor, one you trust, one who answers emails or calls, is what Carl needs. Right now, he needs to know there is a neurologist who specializes in PD, because we live in an area that has few general practitioners, let alone neurologists...he has tried to stay local and has tried to accept his treatment...but, NO treatment is unacceptable.

I appreciate what you and Steve are saying. We agree that a MDS is very narrow in their scope of treatment. That is why we want a neurologist who has worked with PD, who understands the whole person, and who is around when/if we need him.

Thank you for your suggestions on what to say to this new doctor. We are not going into this blindly, but rather, we are expecting to feel some major relief in the hands of a doctor who is a good listener and good communicator. In this area of the world, we feel lucky to have been able to at least meet with this one. I will let everyone know how it goes. No miracles, just relief...and hopefully, a doctor with whom Carl has confidence and feels as important as he should. Hugs, Jane

By olpilot On 2013.11.29 00:01
I agree that it is most important to one trust you doctor, rwo he is knowledgeable about Parkinson's, and three he listens. My neurologist is young, at my age they are all young, but he had it in his family. He has delt with it for real, not just with a stranger who occasionally comes through the door. Your lucky to find someone with such a great reputation and have first hand experience with his patients. I strongly believe that it takes someone who looks at the whole person, all tbe symptoms. Not just a few steps

When you look at the list of symptoms, it's hard to believe any one dr can manage the whole person. When you read Al's thread and the list of symptoms it is amazing the true scope of this disease. My response was just our long aggravating journey to what will be a long aggravating life. Any good news in this life is a blessing, finding a good doctor is great news.


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