Edited by aquariusgirl1971, 20 October 2012 - 11:17 AM.
How long does it take to diagnose
Posted 20 October 2012 - 11:15 AM
Posted 20 October 2012 - 03:08 PM
Posted 20 October 2012 - 03:17 PM
Posted 20 October 2012 - 03:19 PM
Good luck and keep us posted.
Posted 20 October 2012 - 04:27 PM
Posted 20 October 2012 - 07:23 PM
If it doesn't seem right continue to seek answers. You are you own best advocate.
Caution. I sat in my MDSs office and said "yes, I knew I was right!" Immediately followed by "Sh##, I have PD"
Posted 20 October 2012 - 08:05 PM
Posted 20 October 2012 - 08:25 PM
I switched doctors to find one that listened to everything I said, believed me, and started asking the right questions and running the right tests. I only wish I'd done that sooner!
Posted 20 October 2012 - 08:25 PM
aquariousgirl, i know how much you want a diagnosis. we've all been there and felt the same. but remember you may as well have something else, much more "benign" than PD. you should welcome any diagnosis-not necessarily of PD-leading to appropriate treatment.
Posted 20 October 2012 - 09:01 PM
Posted 20 October 2012 - 10:29 PM
I got tired of them adding a drug and it would have warnings about using with everything I was already on. I now act as my own doctor I listen to what they suggest then do my own research. I then tell them what meds I want and in what dosage. It gives me control, something us PDers seem to have little of at times.
My current med issue I need to resolve is that the one I take to make swallowing/talking easier works too well. So now I swallow air and get acid reflux. Their answer is add another drug. Nexum isn't going to fix the problem it will only half treat a symptom. My answer try to lower dosage of one causing problem or to try another one to replace it. Face it there are many of us on here that know more about PD than docs do. We have a vested interest in it.
Posted 22 October 2012 - 03:07 PM
Regardless of what your diagnosis is or will be, one thing is for sure....NO Dr or their employess should be making you feel uncomfortable and unapproachable. My advice is that no matter what happens, find a different, more approachable Dr that will listen. I would find a neurologist who is a Movement Disorder Specialist (MDS) in your area that you can express your concerns to openly.
Edited by Kristakj78, 22 October 2012 - 03:09 PM.
Posted 24 October 2012 - 08:11 AM
Posted 24 October 2012 - 08:41 AM
Finding the right doctor can be half of the battle and some people get lucky the first time. If you are like me it will take up to 8 different doctors before someone actually tries hard enough to figure it out. If you think being diagnosed takes a long time wait till you apply for disability.......
Posted 24 October 2012 - 12:23 PM
My hubs (the one with PD) first went to his internal medicine doc with some strange symptoms. The doc was alarmed enough with some of the symptoms that hubs presented that he promptly ordered up some MRIs - these were to rule out the grapefruit-sized brain tumor that the doc was worried about. From there, we were on to a neuro. He thought essential tremor (ET) at first and had hubs start on some blood pressure meds that also help with tremor. Hubs tried these for probably 6 to 9 months and tremor and other issues were just getting worse. The neuro noticed some asymmetry in the tremor and ordered up a DAT Scan. The DAT scan showed irregularity in dopamine transport and we had ourselves a diagnosis. From the visit with the internal med doc to the diagnosis was less than a year. This, I understand, is pretty quick - some folks take years to get a diagnosis.
After the diagnosis visit and a followup visit, reading posts on this site and others about MDS, and reading a scholarly paper about care differences/care outcomes between MDS, neuro, and general MD, I knew we needed a MDS. (The paper by the way is available at: http://www.movementd...eng article.pdf) The neuro, I'm sure, was super smart, but lacked specific, day to day experience in movement disorders and besides his bedside manner was absolutely atrocious - I swear he was catching up on reports concerning my hubs for the first few minutes of every appointment - what's with that?! Like he couldn't remember us from the last visit or take a few minutes before our appointment to get refreshed on our case?! We let the neuro know that we were going to seek another opinion and his response was something along the lines of 'every doc will have their own opinion' - as if we were going to waste our time seeing someone else. WHATEVER!! I don't want to sound preachy, but one thing to remember is that it is YOUR appointment, YOUR money, and YOUR life!! You have to do what you have to do for YOU!
I feel like we were/are lucky in that we live in a city that has a NPF Center of Excellence facility. We now have a MDS that my hubs fully appreciates and respects and I think she feels the same about him.
You may have to work at finding just the right doctor, as others have noted too, but I think it is a worthwhile expenditure of your time. Especially since it will likely be a relationship that you will have for a long time - barring misfortune or, conversely, the jackpot - a cure. Good luck!
Posted 25 October 2012 - 07:45 PM
They say that about 80% of your dopamine producing cells have died by the time symptoms start to really become noticeable. Like Williamg said he noticed that looking back he can remember symptoms from long before he was diagnosed, years.
I was 32 when they diagnosed me and I had seen Psychiatrists, Neurologists, GP's, Chiropractors, and what ever other kind of doctor there was available. And I came upon the Fear me I am God types ( I hate to say it but they were both Neurologists) Anyway finally I went to another local neurologist and he said I think you have Parkinsons. Gave me the little yellow pill and 20 minutes after I took it...It was a Miracle ALL my symptoms were gone!!! Until 3 hours later...
Anyway yes go to a MDS if you haven't already. They would be your best bet! And there are nice ones out there.
The road ahead is not an easy one whatever the diagnoses is but just remember to take it a day at a time and start to enjoy the things you haven't in a while because you've been running...things will be better. There will be good days and bad. Or we can pretty much say good moments and bad moments. But it is a journey...not a destination...
God Bless you and your children, our children are our blessing and can really be helpful to us. But we have to remember to treat them good. We have the pain, they don't know. So be gentle and loving. And tell them "Mom is not doing good at the moment and go to a place where you can be alone." So that you don't "take it out on them".
I'm not trying to tell you what to do or how to be...I am just speaking out of Love and Experience and knowing what I have done wrong in this journey. And trying to spare you some of the $^&*#@.
Posted 29 October 2012 - 05:47 PM
Posted 29 October 2012 - 06:26 PM
Once my primary care doc sent my records to the MDS, he reviewed them and agreed to see me. I did not know this step took place until much later. I then waited for the next available appointment. From time of referral to appointment 4 months.
The MDS's office called me on a Friday afternoon and said they had an opening on Monday. If I didn't accept appointment, it would be another month or two.
Please be patient. It may be longer than you are expecting, but it's worth the wait!
Posted 29 October 2012 - 08:58 PM
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users