Dat scan results

I had abnorma/positive results on my DAT scan but I think that some people can have false negative sometimes too. I have a question and will be very happy if someone can help me. I take 5mg selegiline and it doesn't help me at all; my hand tremor is bad now. My neurologist sugested to start taking something with levodopa? But I am only 36 if I start it now what will help me in the future? He said something that another option it to take maripexin or something similar but was worried about compulsive behaviour with me because I used to spend lots of money before I was married. What should I choose? Help

Thanks Lexi, I appreciate your reply.

Tony

Hi krzyiek 98, I am 51 and was immediately put on Madopar 100mg/25mg x 3 per day and rasagiline 1mg x 1 per day and the effect has been miraculous. Symptoms subsided within days and I only struggle when I am tired or stressed. I am a believer in quality of life rather than quantity and to find that within 1 month I am back running and training has done wonders for my sanity. I have an 8 month old grandaughter and to hold her without worry of dropping her is fabulous. Good luck

 

Tony

Hi krzyiek 98

My usual response is the same as Top Cat's - gimmie the drugs, jam today let tomorrow take care of itself. But I understand that most neuros are indeed reluctant to prescribe levodopa at an early age because of the possibility of side effects later on?

But as you say you're in a bind. I understand (and again I'm not a dr) Rasagiline/Selegiline do little for tremor. Pramipexole (Mirapexin is a brand) +/- Selegiline can work v well (it does for me) but if you're prone to impulsive/compulsive behaviour anyway this may not be a good choice.

I'd say: read the drugs booklets on this site to get a better idea of the risks and benefits. Talk to your Parkinsons nurse as well as your neuro to get the best range of advice.

And good luck!

Semele

Hi, krzyek 98,

I agree with Semele: read,read, read on the subject. Knowledge is indeed power.

I too understood that it is best to start on one of the dopa-agonists, rather than levodopa, as patients can be well maintained for a very long time on them and levodopa can be saved for later on..

I am still trying to get well informed on the subject of the pros and cons of all the different drugs, as I have not started on any yet. However, I am seeing the Parkinson's nurse next week and I presume we'll talk about possible medication.

The neurologist had prescribed Rasagiline, but it made me rather ill when I happened to eat some food rich in Thyramine, as it pushed my blood pressure up. So I stopped it immediately. Also, Rasagiline ( Azilect) does nothing for Parkinson's symptoms.

Do take care. All the best. 

redpoppy

Hi Redpoppy, sounds like you were unlucky. The NICE guidelines clearly say that selegiline and  rasagiline don't cause a reaction after consumption of tyramine-rich foods. But they do improve motor symptoms, improve activities of daily living, and delay the need for levodopa.

Ah well, with PD, what works for one . . .

Semele

i thought rasagiline slows the progression of pd,made my arms feel week when i took it ! suppose whats good  for one cannnot be good for someone else.

Hi, Semele,

You are clearly so well informed in all matters to do with this disease. That is excellent, as it is very important to be well informed so that you can help yourself ( and others, in your case !).

As far as tyramine-rich foods  and MAO-B inhibitors are concerned, I did follow the link you kindly provided sometime ago, but the article was focussing on Selegiline rather than Rasagiline. Indeed, apparently with Selegiline the reaction is not too bad and the danger is negligible up to 6 mgs per day of the medication.

However, it is interesting to note that obviously you and others here are taking Rasagiline quite successfully, presumably without excluding tyramine-rich foods such as cheeses, yeasts, figs, broad beans etc. I, on the contrary, as you know, I had a bad reaction when I ate some figs after taking Rasagiline and felt really ill with a much higher blood pressure than normal. Of course, at the time, I did not know about a possible adverse reaction. I also note that Gus was not suited to Rasagiline.

I have actually since read about this possible negative reaction in one of my books from the " American Academy of Neurology books". Its title is " Navigating LIfe with Parkinson's Disease" by Sotirios. It is quite a comprehensive book, which I would recommend.

I know that Seleginine and Rasagiline are presumed to slow down the progression of Parkinson's, but doubts remain and certainly my neurologist does not believe it does. He only prescribed me Rasagiline because I insisted.

However, I do hope that Rasagiline does indeed work for everyone, even though I personally cannot benefit from it, as I am not prepared to modify my diet.

Take care and thank you for your interest as always.

Redpoppy

Hi Redpoppy

It would help us, wouldn't it, if science were a bit more certain. At least, not contradictory! My understanding of the so-called cheese effect is the other way round to yours - rasagiline is less of a problem than selegiline. And for deffo the NICE guidelines don't distinguish the two. And yet, you had a clearly nasty reaction.

I'm a vegetarian, so like you I couldn't change my diet and indeed declined my PD nurse's advice to take rasagiline until I read the opposite advice to you. Cor, luckily it was correct for me.

As to neuroprotectivity, the initial studies have certainly not been borne out. In the Q&A on drugs here recently http://www.parkinsons.org.uk/forum/thread/59549 Janine Barnes ruled out any likelihood that R. was neuroprotective, boo-hoo, and so do the NICE guidelines. And yet my neuro prescribes them for me specifically for this effect! Do they work? Of course I can tell: you can't do a doubleblind RCT on a sample of one that's yourself. . . .But I'm here and so far my PD is slow-moving. 

Good to talk with you

Best wishes

Semele

Hi All,

 

As I understand it when they did the trials, they anticipated a  problem with tyrosine rich foods but in practice  the problem did not arise.    1 mg is enough to knock out the enzyme which is busy mopping up excess dopamine in the normal person as part of the amazing checks and balances in our body, whereas of course we need to keep as much as we can    There is no added advantage in taking 2 mg although I believe  when rasageline first came out  people were given this.    I felt a subtle but definite effect sort of more normal.  I wonder whether it is more effective with levodopa preparations than d.a.'s or vice versa

Hi; I agree with top cat, semele & redpoppy. I and my neurologist looked at pros and cons of different medications. We decided that because of possible compulsive behavior that I start to take Sinemet 12.5mg\50 mg 3 times a day. I feel much better now and hope it was a good choice.

My husband has had PD for 19 years. Yesterday he saw a new specialist who has arranged for him to have a DAT scat to confirm it is PD, why,after 19 years surely it must be PD.

that sounds terrible !

Hi i had a dat scan recently and have just received a letter from my neurologist saying there is a dopermine reduction on left side basal ganglia. Does anyone know if this means its almost certain to be pd? .i have to wait for an appointment to discuss with him now but really trying to gathed as much info as i can, i have several pd symptoms. Thanks for any input x

Hi Shelly1971,

I also had a dat scan which showed a dopamine reduction in my case both sides showed a reduction,this was to confirm the diagnosis of PD.

Hope this information helps.

Cheers Anne 29

Thanks anne29 I was thinking it probably was to confirm as im only having symptoms on my right side so letter says the result is consistent with my symptoms. Just have to wait to see my neurologist now to discuss so im expecting a pd diagnosis. Although im worried for the future im also relieved that ive finally got a diagnosis as this started nearly 2 years ago with what i thought was frozen shoulder!
Hi Shelly1971, I started out getting checked for a neck problem. Then finally went for a scan to reveal reduced dopamine on one side. I have weakness on my right side only. You've got the right attitude to the diagnosis as knowing what is wrong can cut out some of the worry. It does take time to come to terms with any diagnosis so be good to yourself and accept all support.
Thankyou DivineR I think it helps to try stay positive! Even though the letter from the neurologist doesnt actually say pd he did explain what the datscan was for when he booked the appointment and the potential outcome so i guess when i go and see him again it will just be confirmation. I have a meeting with my boss tomorrow so will at last be able to explain in part what is going on which is also a relief! Shelly1971
Hi Shelly1971, Yes I think letting people know what's happening can help you in a way. It's less stressful than trying to hide symptoms. As you'll see from alot of posts here, you've got years of good living to do. Everyone progresses differently so do what you feel is good for you. Try exercising and diet tips and keep what works for you. It's a constant work in progress.
DivineR Yeah ive been told to stay as active as i can, which is good as i enjoy running so am keeping that going while i feel i can plus i walk my dog everyday so at least im trying to keep mobile. Had a chat with my boss who was very understanding, if a little shocked but has promised as much support as i need. I think the worst thing for me at the moment apart from waiting on the neurologist appointment is the stiffness and aching on my right side and cramp in my right foot, it can be so painful!