Is it Parkinson's or not ...?

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 razz

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