Hi, l have PD and not happy with my present neurologist. I am not on right medication for my condition yet. Also, feeling worse then at the beginning. My doctor doesn't have a real interest to help me.
I need a second opinion from a top neurologist specialising at PD, movement disorders.
Can anyone recommend a doctor ( hospital ) who is outstanding and can make a real difference.
I don't mind going privately. Live in London.
Many thanks.
Are you aware that no current Pd medication slows down or stops the progression of Pd? Bearing that in mind, is medication the right way to go? I have been able to overcome meany of the symptoms of Pd and I am coming to England in September to talk to people with Pd and show them how to go about overcoming many of their symptoms, without spending one single penny. I will be giving a talk in Wanstead on the 6th of September and will show people how to walk properly, even those in wheelchairs.
My profile will tell you more about what I do.
Wrong! A recent study has shown Azilect for one does slow progression. And a number of us have had minimal to no progression (including me) with Azilect.
It clearly may not help everyone but you are not doing anyone a service by telling them in essence not to take it or not to believe
As some of you may know, I have been telling people about Selegiline and Azilect for over ten years.
Believe it or not, some people don't like the idea of us getting better!
Huh?!
You said "Are you aware that no current Pd medication slows down or stops the progression of Pd?"
I responded that I am aware that Azilect does slows down or stops the progression of Pd.
Confused by your response... What are you saying now?
Such claims of slowing PD progression for Azilect were attempted to be proven but were denied by the FDA, from what I read.
Selegiline has been around long time and much cheaper than Azilect and MAO B also. Has been tried as an "antiaging" in lower than PD doses.
Can not see a MAO B that works on Dopamine slow progression , but who knows, with another mechanism maybe.
John Pepper is a fan of exercise and it worked for him, not that easy for all of us though. Specific exercises do increase endogenous neurotrophic factors in the brain. I would rather pop a pill ashamed to say !
Obsessed with Nilotinib ( Tasigna ) at the moment and willing to try it, but the price is astronomical. Very frustrating to know there is something in the drug store shelf that can help you and you can not try it.
It was denied by the FDA because it wasn't a double blind or something like that. A more recent test showed an average 20% reduction in progression. That was the average meaning it worked better for some and less so for others.
I am on a train to NYC (I am in my 70's and work 5 days a week) so I don't have time to look up the study. Will try later.
ALSO, Azilect is now generic and cost me about 70 cents (less than a dollar a day).
My message to John Pepper, to you and others is DON'T MAKE ABSOLUTE STATEMENTS THAT THERE IS NO PROOF. THERE IS. Those of you who are taking Azilect or any drug that is working for you should keep believing. I am luckier than most. I have had little if any progression on Azilect. Not I also take L/C for my symptoms. I take Azilect solely to stop progression.
Moreover, if you have just been diagnosed, I would strongly recommend you ask your neurologist to prescribe it. Which way do you want to be wring: Taking something that may not work for you or not taking something that would have.
Most importantly, exercise if you can but at very least, keep moving.
The FDA non approval of MAOB inhibitors as a PD modifying drug was quite a few years ago.
This new study suggests that MAO-B inhibitors are slowing PD progression... michaeljfox.org/foundation/...
Marina. I cant help about a good neurologist. If you give y our date of diagnosis and current meds.this may enable more helpful comments from others here .It can take a long time to hit on the right combination of drugs for some people. One thing that I would point out is that you can get the same ( or worse!) symptoms when over-medicated as when under medicated. Also make sure you get a neurologist specialising in movement disorders
Marina11. I'm sorry to hear about your condition,there will be a Parkingsons nurse in your area(P D association will help you find the nearest).you don't have to be referred,Mine visited the house,things will get better ,don't delay,they will help you.good luck.
As paddyfield's says you need a Neuro who specialises in PD and movement disorders.
My first Neuro was outside my health authority so could offer me nothing but medication (Azelect) and advice to excercise . My GP agreed to re-refer me to a Neuro within my area. Thus I was able to access a PD Nurse (home visit), neuro occupational therapist and neuro physiotherapist. Advice from these people has been very helpful. Might be worth investigating your local hospital websites to see which might have a good Neuro team.
Also look up PD Warrior (Australia). UK some private Physios and a few NHS Physios are using this programme.
Also Beats Medical (Ireland) if you like 'phone apps.
Yes ! Contact Georgetown University Neurology Dept. in Washington, D.C. Just realized you live in London. Make appointment anyway. Doctors see you every 3 months, more if needed. They are the supermen of Parkinson's . Good luck ! Pam
I find that the best Neuros are those who admit they do not understand Parkinson's. In stead of just giving you sinemet they will take there time, test physical, mental and relationship. Also the patient has to be totally honest with the Dr. I find that if they are open they will try to get as much info from you as possible to make an educated guess, and that is all it is. So be truth full and share every little detail no matter how embarrassing, or insignificant you think it is. DO YOU HAVE DEPRESSION OR ANXIETY? . It is the difference between drugs and can make all the difference.
Mariana, have you tried asking on Facebook? I can give you a link to one group which has a high proportion of UK members who might have a good recommendation.
I am fully sympathetic. Many neurologists are both researchers and practitioners and in my experience (5 years since diagnosis), most prefer the research to the bread and butter stuff - interacting with those of us who actually have PD - which I suppose can seem a bit trivial to them. I have had Andrew Lees recommended to me, but haven't taken up the recommendation myself, yet. He is based in London. I think he has officially retired, but if you look online, his profile is there. He also did the original small trial on Mucuna pruriens in 2004 which showed it worked more quickly, was as effective and participants had no side effects. Direct message me if you can't find him. Also Queen Square in London has a good reputation. Good luck.
My current neuro is Dr. Romi Saha at King's College Hospital, south east London. seems pretty good. Also new Parkinson's nurse starting there soon.
Good News - Drugs to address chronic inflammation and PD - NodThera
Official Letter to my neurologist
IS DYSKINESIA PART OF PD?
Requested help for further training of neurologist
