Hello astoriasis new flower,
i am afraid making a nuisance of your self from what i have seen does seem to be the answer.
You have made me very curious now " which hospital are you being referred to????
Best wishes BB.
Hi BB
Making a nuisance of myself is appearing to be working. The Gp telephoned me stating she had written to the neurologist/secretary personally, so hopefully in the not too distant future I may have a response.
With all due respects I would prefer not to mention which particular hospital it was. You do not know who else tunes in with the site. I would be prefer to do it to you personally on the site if you allow it.
All the best
Astoriasis
Hi Astoriasis,
I see your point feel free to send me a private message if I can help in any way I am happy to do so.
Kind Regards BB x
Hi BB, Astoriasis and Twinks
Firstly Twinks please accept my sincere condolences for the loss of your Dad :( I hope you're doing ok.
Sorry all, not been logging on. Saw the neurologist on 7th Oct and he said he still can't give me a diagnosis of Parkinson's as he said some of the symptoms I am presenting with are not consistent with PD (I'm getting lots of muscle twitching in my right leg) but he said he "can't rule out a serious neurological condition" From what I've read I do understand that it is a lengthy process but I do find this frustrating. At the moment my head and neck feel like they're in a vice and I feel like my had is being blown up from the inside, making my tinnitus worse due to the pressure in my ears. I'm just discovering that this, too, may be attributable to PD, but who knows!? He's sending me for an EMG test on my muscles on 28th Nov and then 'come back in a year if that doesn't produce any results!" Does this sound familiar to anyone?
Thanks for the update on the Mucuna, Twinks. It makes interesting reading.
xx
It does sound familiar but I cannot understand the length of time it is taking. I do not know what area of the UK you live in songbird but if you are anywhere near Lincoln Prof Sharma is a PD specialist and he is based at Lincoln County some people do not like this hospital but I cannot fault them. I was dx within 3 months and that is unpresented.
Hope this helps xx
HI BB
I'm near Birmingham so not local to Lincs.
I think it may be because the DAT scan was inconclusive; it wasn't entirely normal but not abnormal enough to definitely be PD. Oh well. Just have to wait and see.
Hope you're doing ok :)
SB
Hello Songbird
You are displaying all the early signs of PD, sorry, but all is not lost there are many meds out there which will allow a normal life for weeks,, sorry I will put my silly head away now and lock in the seroius one,, ahh thats better I have donated my brain to the brain bank only when I am totally finished with it mind, though by then there wont be much to look at me thinks, as I was saying the drugs will smooth your road ahead for as long as you need really, the team looking after me eventually obtained Duodopa for me and its very good though I feel I am becoming tolerant of the system , and the tubes have to be changed every 3yrs or so which I am having in a couple of weeks ,, its a small but weighty pump that delivers a dose of a precise amount to my small intestine immediately so no waiting for the drugs to be absorbed through my tum etc., wellcome to PDFI wish you well in the years ahead.
FED
Hi songbird and all
Its a little time since I have sent a post but I wish you all that you wish for yourselves - if that makes sense. I'm doing Ok, went to see the orthopaedic surgeon today with a bad hip. When I arrived the gp had referred me for a bad knee and when I saw the surgeon he said he didnt know if it was my hip or my back - now then work that one out! As for the Parkies it is three and a half years since my diagnosis and I have never had a scan at all. My diagnosis has been made on the signs and the symptoms I present. BUT following asking for a second opinion and waiting for eight months I have finally got an appointment with a neurologist on the 5th December. After this afternoons experience I don't know what to expect. The only conclusion I can reach that as you get older you seem to get a different diagnosis of disease every time a medic examines you. It's just as well I am not depressed cos life and health are a bit of a mystery to me these days. Does anyone feel the same? However reading the posts some of us do!
Keep smiling and as my son used to sing, (do you remember the song) BE HAPPY 
My wife sometimes wonders if its Parkies or MSA she has !!! She was on sinemet since dx then tried madopar for a short while and it made her even worse so went back to sinemet. The sinemet stopped a tremor in her right hand, swallowing, an inner tremor and some involuntary movement also in her right hand. She has tried Rasegaline and Ropinerole seperately with her sinemet and they don't work nothing yet has helped her stiffness,fatigue balance or jaw ache and pins and needles in he gums, seeing PD nurse Wednesday to see what next. Her jaw caused her unbearable pain on Saturday night so we decided to take sinemet every 3 hours instead of four. Oh to find something that can help her.
Billy
I overHello Billy
I know only too well the worry and pain you are both enduring , finding the right meds is vital and believe it or not I have tried every known anti PD drug,and bl???y hell Billy the side effcts of some were horrific, I became a sex maniac overnight, I went to bed the same old FED, and was awakened by the most shocking dream, I wont go into details but it involved by dear lady L and a group of teenage thugs, we will leave it there as its effect on me was horrific instead of my normal reaction which would be to turn over and hug my wife , well lets just say ,, yes I turned over but not to hug her and as it had been about two months since any form of passion shall we say, well her reaction was positive, and so thing progressed , instead of once every two months it became twice per week, then four times pw and more to the point I would not take no for a answer , now you dont know me Billy, but I am not a sex predator or rapist, yet I would carry out what can only be described as fantasy sex marathons and as I SAID earlier L went along with it and Ioverheard her chatting to her friend on the phone (landline) I WAS upstairs and picked the phone up as it had rang for at least 3mins and she always beats me to answer it but as I picked it up I heard her say ( oh I dont know whats happening with FEDexy,, he cant keep his hands off me , I am FEDUP (NO PUN INTENDED) Would you like to chat to him and ask if he can slow down a bit,, I am not getting any sleep and he is becoming ver y rough), this conversation made me think and so I investigated the drugs I was taking at that time, one was called CABERGOLINE and the other Entacapone I will have to leave it there as my wife is going shopping and we have a agreement that I wont use the laptop when she is not here ??? SO WATCH THIS SPACE
BFNFED
Thanks for the reply FED and thanks for the warnings about the meds. We have just returned from seeing the PD nurse and she said we did the right thing coming off the ropinirole and reducing the sinemet times. Taking the sinemet every 3 hours has helped although the shoulder jaw and problems are there, they are not as bad as before. The nurse said to stay with what we are doing until the ropinirole is out of her system ( about for weeks ) she is going to write to the consultant to see if Amantadine can be tried next .
all the best to you and your wife.....Billy
Yes take care when taking new meds as your wife may react badly a guy in Newcastle was found not guilty whe the effects of the drugs were read out, he had raped his neighbour, now I never attempted anything like that all my lust was directed at my poor wife, any way we are ok now I have Ddopa which works for me.
Regards to you both FED
In a previous post i said that my wife has pins and needles in her gums, her jaw line feels bruised to touch and has been very painful, her lips feel taut and also she the feeling that her mouth is full of saliva, but isn't Has anyone experienced these symptoms or is it Parkinsons or not ?
Billy
Hello Billy and Lady Wizz
Last night I was watching YOU TUBE ont telly when I suddenly realised I couldnt move my tongue, it was very securely stuck to the top of my mouth and any attempt to unstick it was very painfull ,also the left side of my face was also imobile and painfull if any attempt made to loosen it I thought it was stroke,, more on this later as goin out.
BFNOWFED
I take a bottle of water everywhere now as my mouth siezes up on regular occasions which glues my lower jaw to my upper and it hurts, water cures it instantly
Best wishes FED
The mrs laughed at being called Lady whizz Fed
Hi billywize I have the excess saliva problem expect you can't see it. So I would be inclined to answer yes.
Hope your both doing ok???
BB xx
Doctor thinks my wife has Burning mouth syndrome. Oh the joy of it all on top of Parkies !! We are getting on with it as yo have to. Thanks BB.
Billy
Has your dear wife every had option of DBS Billywize?
Hi BB is DBS for people that have a tremor ? My wife doesn't really have a tremor she has the bradykinesia type of PD,mostly slowness of movement, Fatigue,stiffness and balance problems. She takes 5x sinemet 100/25 and 2x amantadine daily. The sinemet helps because she gets the off period if she forgets to take it not sure about the amantadine though, shes not been on it that long.
Ah well off to our Parkinsons support group later...Billy