New and Confused


#1
Hi everyone
I'm new to this whole thing about a year ago i went to my doctor with a twitch im my thumb that i had a while, after two weeks i was back there with a whole hand shaking and my leg twitching.
My GP was very concerned and sent me to see a neurologist after first tests and checks he was 98% sure i had but didn't want to say for sure due to my age (35)
I've had all the tests MIR CAT and the big one DATScan
the Datscan showed all normal but the Dr said that it isn't infallible
due to my stiffness , tremor and short steps he started me off on Azilect which seemed to work, 5 months after starting it my symptoms have got worse
I now shuffle and even find it very hard to get out of bed sometimes I'm always tires and really struggle with simple tasks, I struggle with my balance and my wife says I slur my words sometimes
My Neurologist is thinking now the Datscan is very accurate and some of my symptoms are strange like when I move my left hand the tremor is disturbed in the right hand
All my blood tests and scans have all come back clear
this is beginning to worry me and if it isn't Parkinsons what could it be ??
The Neurologist wants me to go into hospital so he can observe me
I asked how long but he wouldn't tell me a time scale just said as long as it takes
has anyone else had the hospital observation and how long did it last
The only answers I get from the Dr are shrugging of shoulders and if i ask him what he thinks it is he asks me what i think it is
i hope someone can help I feel like i am loosing my mind

#2
I was told if the drugs aliviate symptoms then you have PD.......as yours did at the beginning. I think you need to up your medication and again will get relief from your symptoms. I can't understand why they need to observe you in hospital. Good luck. Perhaps ask to see another neurologist.

#3
the Neuro says he is conserned about the syptoms i have as they are not the norm for parkinsons
some are and some arn't
my tremor is not "the standard for parkisons" his words not mine
they want to observe me as i tell him things that are happening to me but he doesnt see them as he only sees me for 20 minutes every 3 months
the main worry for him is the Datscan being clear ???

#4
Hi Stew 224

I have only recently been dx with PD. When I saw the Neuro for the first time in Dec 2011 she was concerned that whilst some of my were parkinsonian others were not. I was referred for a MRI and Datscan both of which came back abnormal. She told me that the Datscan would show for certain if the Dopamine was normal or not and that if it was normal then the symptoms were something other than PD and that is maybe the case for you. However nothing is infallible and in my case she says that it is 95% positive of being PD and I am still undergoing further tests. If it helps, my tremor is not typical either.

It is a horrible thing to be in this limbo of knowing something is wrong, but not being able to put a name to it. All I can do is say keep asking questions and wish you good luck. In my case I am just trying to be positive that it is PD because the other possibility is not at all nice.

Best Wishes and stay positive

Topsy

#5
Hello. I'm in limbo too with my neuro not convinced it's PD because my tremor is wrong too. MY MRI's are clear. I was trialled on sinemet to rule out dopa-responsive dystonia but that was ruled out because I did not respond enough but my tremor did stop on the low dose so I was allowed to continue with it. Sinemet has been increased and it helps so much when I'm dosed up (it lasts about 3 hours before it wears off). I can write, walk quicker, turn around and talk properly.Without it I freeze, struggle to get up and struggle to do normal things like make a cup of tea. I wonder if it's not PD what is it? I hate limbo. I see him on Thurs to see what he thinks. He has also considered putting me under observation for a week but instead I have taken video on my phone of walking before pills and after. I have also written out a typical day. I'm hoping it will help to show him what it is like. I hope you get answers soon.

#6
Hi Snowflake
that sounds just like my symptoms
i have not been on sinemet though just azilect wich is still helping but not as much as it was
i was told while in hospital he is going to take the azilect away and see how i respond i read somewhere that it takes 2 weeks to come out of your system hope this isnt true i would hate to be in there longer than that
he also said he would try me on other drugs to see the results

#7
Hello Stew224,

Welcome to the forum, I haven't got pd but my husband has had it for thirty years and we have been involved with many many people over this time, My best advice to you is go into hospital and let them observe you over time and then at least you and they have every opportunity to see how things are, then if they need to try you on a drug they will then be able to see how effective they are, if you do this from clinic appointments it will take longer and they don't get the whole picture. I know nobody wants to go into hospital but if you keep a diary yourself as well you will be able to make some sense of it all.
I hope your consultant is good and that they sort something out soon,
best wishes and good luck
vivian

#8
Hi
There are other conditions that respond to PD drugs so that is not a surefire way of diagnosing unfortunately.
Azilect leaves the body relatively quickly but before that it has knackered (technical term) the MAO-b enzymes and it takes several weeks before these are replaced. However, when I stopped taking it the effect seemed quicker than that, I think it depends on how fast your enzyme replacement works. Also they may not have to wait for them to be completely replaced, the two weeks is more of a safety gap for drug interactions and so it probably has a safety margin.

hope your diagnosis turns out well.

#9
My main concern is how long i will be in hospital for
how long after taking me off the azilect will they see a change id hate to be in there for 2 weeks just sitting around waiting for the effects of the azilect to ware off then how ever long after that to find out if it is parkinsons
i have 3 kids and a good job that up to present have been good about any time off I've needed but any time away from my kids I hate

#10
i know how you feel about being away from the kids, sometimes they drive me up the wall but you are always glad to see them if you've been separated.
i can't say how long you will be in hospital but knowing the prsessure on nhs beds I doubt it will be one day longer than absolutely necessary. i doubt if your doctors know how long but they wont just be hanging around waiting for the azilect to wear off and it should wear of in terms of symptom relief in a lot less than 2 weeks. I am afraid that uncertainty is unavoidable. it can be very difficult to diagnose and a wrong diagnosis can have consequencies. i my experience its normal for doctors to keep patients in the dark until they are certain to avoid unnecessary worry. Of course that doesn't work.

#11
Hello. Just a quick update. I saw my neuro and it seems I probably have dopa responsive dystonia and reading other people's experiences about it (theire is a facebook page on it), it all fits. It is so nice to have a diagnosis even if it is just probable at the moment. More blood tests are needed. It's rare especially in adults.
Stew224, have you had a sinemit trial or did you go straight on azilect. From what i've read dopa-responsive dystonia responds to levodopa but does not work so well with other parkinson's drugs. It maybe worth looking into as it can look like PD but not quite.
Not sure whether that helps but good luck and keep looking.

#12
I just went on to the Azilect with great results. It helped with the stiffness and cramps even help with the tremor
the funny thing is it has had very little effect this past month but now it seems to be doing its job again, not as well but better than last week
I mentioned this to my local GP when I saw him and he said it could be I had a viral infection that could have been effecting me and making things worse
after all my wife and son have just got over hooping cough so I wonder ????
Still waiting for my Hospital visit
and still worried about coming of the azilect and how long before it wears off and how I react with that
nothing to do but see what happens (fingers crossed)