A little Advice


#1

Hi All

I was diagnosed a few months ago after just a few visits to My Neuro which i thought was rather a quick conclusion , my symptoms were not totally unbearable but there was something definitely going on And my Family were noticing definite changes. After my MRI and Bloods came back OK and after my movement assessment i was started on the meds , low dose of 4 x sinemet plus for the first month then added resageline 1 x a day. I responded well to the meds with no real side effects observed.I of course still didn't believe the diagnosis and started to test myself in not taking meds for a day here and there. My original symptoms came back..

My Neuro was pleased with the obvious response of the meds and sent me for a dat scan in early December. By this time i was reading more and more about dat scans being inconclusive and some Neurologists do not trust them. We went down the private route with work insurance, 

After reading some of the trials some have been through with their diagnosis with young onset pd i was wondering if the dat scan returns normal or inconclusive then is that it you definitely do not have the condition and everything stops ie meds etc. Or do the Doctors go more on the treatment history.

Many Thanks 

 


#2

Hi Riggs 70

  Iv not had a dat scan myself and was dx on my first Neuro visit  , as I understand it there in no definitive test and if the drugs work then it's pd , I believe sinemet is only used to treat pd so if it works you have it .

  It takes some time to accept the dx and everyone thinks it's wrong at first I think , I was dx about a year ago and think even now I don't fully believe it , though to be honest it's now pretty obvious I do.

 Live well.  Cc


#3

 

Hi Riggs70..........When I was diagnosed they sent me for an MRI head scan, the result being that I had parkinsons and It also showed that I had had a mild stroke, I often wonder if this could have triggered the parkinsons. The shock of discovering both took time to sink in, and I refused medication for the first 12 months. Taking it all in and accepting the diagnosis , thinking all different things,especially if they where right in their diagnosis, but I soon realised I needed the medication, that helped me accept the prognosis. I am taking Ropinirole and have done for six years now, as I said it does take a little while to accept what you have, and it's a long journey.

Take it in your stride and  all the best - Sheffy


#4

Hi  riggs 70 I have never been tested for PD but I would not fancy not taking my meds. apparently it only can  be conclusively found post-mortem . Don`t be in such a hurry it`s early days  you will wake up one morning and forget you have it     for a few seconds remember  the feeling it gets long . After 10 yrs I have to remind myself I have it sometimes  It is not all consuming it`s not ease but you are in it . don`t get trailed behind it get in front let the medication give you space to think calmly .      good luck


#5

Hi Guys

i had my Dat scan results back in Jan , the Neuro said it was normal , but after another movement test he stated he was looking at DRD which is a genetic distonia condition which is treated with sinemet. he wanted me to come of all meds for a month and return for an assessment , after 2 weeks my Wife wanted to see him again as the symptoms came back with a vengance. It was like seeing another doctor when we returned he said it was 95 percent PD and asked if i wanted slow release sinemt , to be honest i was very rude as i had had enough of test etc. i decided to come of the meds completely and try to manage it myself with training in the morning even through the stiffness. this isnt working by the way and have been back on the sinemet when its a little too difficult. Are these dat scans conclusive ?. i must sadly be on the diagnosis wheel that so many others must have faced, and frustrated at with the lack of a conclusion


#6

There is no test yet that gives a 100% accuracy in diagnosing PD. Only a post mortem would give you the defiinite answer.A DAT scan, however, comes close, and any doubts either way will be resolved in due course as the symptoms of the disease,if it is present, will increase over time.


#7
Steve I found your post via a search for 'abseil' as I've developed quite a taste for it. More on that later. This reply is long so here goes Diagnosis There's a saying 'if it looks like a duck, waddles, swims and quacks like a duck, it's a duck'. Add in something more surreal, but supposedly definitive like does it answer when you call it Daffy and suddenly it may not be a duck, but actually a Disney cartoon(ist). Now, what the eck has that to do with PD? Well, PD is a condition usually 'diagnosed' by a person experienced in observing symptoms and the reaction to outside influence, be it manipulation of limbs or drugs. Typical PD symptoms begin to become noticeable when it is thought at least 70% of the brain cells that produce Dopamine have either died or ceased functioning correctly. These cells are contained within the Putamen area of the brain and once cut open the PD diagnosis is final, literally. QED, the PD duck test. MRI and DAT scans aren't definitive in PD diagnosis but could reveal brain irregularities that relate to your symptoms. Weakness on one side, facial expression as typical Stroke evidence. There is a PET scan using a radioactive isotope that does show up the activity of Dopamine producing cells but they take 2 hours laying as still as you can, NO breaks in the narrow tube style machine but NO noise above the gentle cooling fans. They are Torture if you have PD as you have to be off meds for them. Cost around £10,000 each I'm told. I've had 2 as part of the GDNF CED trial. I knew I had PD when those were done. When to Medicate Check you're doing all you can to be as healthy a person you can be who also has PD. Brains and bodies are in essence an ageing machine. It will break down but you can influence the route if not the destination. Staying healthy is more a state of mind than many give credit to. No point being perfect this or that if you're stressed out by what you eat or do. Life is a balance between living and existing. If you have PD the medications available help you live not simply exist. An initial level of medication will require increasing in most cases, as and when more brain cells stop working, not because you began them too soon My theory is that the link to Dopamine production may be why some people have young onset. In my theory, excluding traumatic damage, the brain cells die at roughly the same rate for all but young onset people are simply more sensitive to the reduction in dopamine production dropping. They may not have lost 70% and could benefit most from any treatment that can slow, pause, stop or even reverse the cell loss. Treatment / Stages 1, 2, 3..... Observe, medicate, evaluate, review medication, observe, tweak, increase. Manage symptoms on a 'fire fighting' basis. This is where everyone needs to do their bit in taking responsibility for keeping your specialist and support team up to date on your symptoms pre and post meds, your dietary and activity schedule plus ANY suspected reactions. The symptoms of PD are many and varied, drugs that work for one person may not work for others with the same symptoms. You can view diagnosis as the end. For me, It was more like knowing I'm not going to win the marathon of longest life. Yes, it's a shock, unwanted and is going to affect everyone and everything I know. It was an opportunity to take a different route. To quote Parkinson's UK: CHANGE ATTITUDES This simple but powerful approach gives you as much control as you want or need. I don't have wings but the view as I stepped out onto the abseil platform of the Spinnaker Tower was one those Matrix moments https://youtu.be/lpG9PmEhhFM Now for the non Matrix fans. I never ever thought I'd quote Keith Harris I wish I could fly............but I can't, You can https://youtu.be/TGnuMxFnc1k Orville is a duck.......