Hi again.
September is only 7 weeks away, so don't panic. Don't forget it's the holiday period, too.
It sounds to me like you have PD, but they can't give you PD drugs until they're certain, or you could end up even worse! Your GP can't be expected to be an expert in every specialty he comes into contact with; his job is to correctly identify which consultant you need to see (in this case the consultant neurologist) and arrange for a consultation. Th GP will subsequently prescribe the medication which the neurologist recommends, following completion of the diagnosis process.
Scans are notoriously difficult to understand and interpret, and consultants frequently discuss specific cases amongst themselves before final diagnosis.
Hang on in there!
Ray.
Hi Terri,
I do feel for you. I went through all this eight years ago. Because of the long wait for a scan on the NHS I went privately and, of course, got the result and disgnosis within a week. The consultant then sggested I see him on the NHS for subsequent appointments. However, I have only seen him twice sinc then. My main support is from a fantastic Parkinsons specialist nurse who I see twice a year at the hospital. I think its terrible that you have to wait until sept. It might be worth seeing if your neuro sees patients privately. As you have already had he scan the actual consultation shouldn't be too expensive. Good luck
Janey
I do feel for you. I went through all this eight years ago. Because of the long wait for a scan on the NHS I went privately and, of course, got the result and disgnosis within a week. The consultant then sggested I see him on the NHS for subsequent appointments. However, I have only seen him twice sinc then. My main support is from a fantastic Parkinsons specialist nurse who I see twice a year at the hospital. I think its terrible that you have to wait until sept. It might be worth seeing if your neuro sees patients privately. As you have already had he scan the actual consultation shouldn't be too expensive. Good luck
Janey
hi ray of sunshine thanks for youre help but seen a neuro told me i had pd but wanted me to have scan as i was having other problems so wanted to rule them out does this seem normal practise to you its all getting out of controll thats what i feel like cant move hardley constant pain stiff as a board hand hand tremor falling over wanting to weeeee all the time my eyes keep watering and running forgetting thing all the time even my kids name feel so fed up just wish it was sorted once and forall my hand keeps spasming up why o why does it take so long[ any way thanks ray of sunshine for letting me rant
hi janey i thought of going private my gp told me not to but might consider it now so fed up thanks
MY first few consultations were private, then I switched to the NHS, with the same consultant.
Seemed like a good route, & worked out all right.
Seemed like a good route, & worked out all right.
HI TERRI just a quick meesage to let you know your not alone i too only sleep a few hours here and there (cat napping).Has the doc given you sleeping tabs they usually give me 4 hours uninterupted sleep but feel like %$£" the rest of the day but no more than usual
going private had enough all this messing around had enough
Thinking of you Terri - know exactly what you are going through - keep us posted. Remember we have all been there. When is your appointment?
Janey
Janey
Hi Terri,
I was diagnosed two & a half years ago,went to the GP with a scuffing foot it took about 9 months to get a decision. Have you tried getting in touch with the neurologist his secretary will try to block, but I threatened to just turn up if I did not get a call back - it worked. Also remember you need to ask questions, write a list of questions. I left spaces asked for and got the consultant to write the answers then you can not forget. Also involve you partner I left a letter allowing my wife access to any info about my PD.
Good Luck I know it is tough but I'm sure you can be tougher.
Warlock
I was diagnosed two & a half years ago,went to the GP with a scuffing foot it took about 9 months to get a decision. Have you tried getting in touch with the neurologist his secretary will try to block, but I threatened to just turn up if I did not get a call back - it worked. Also remember you need to ask questions, write a list of questions. I left spaces asked for and got the consultant to write the answers then you can not forget. Also involve you partner I left a letter allowing my wife access to any info about my PD.
Good Luck I know it is tough but I'm sure you can be tougher.
Warlock
we must have a very good health service in cumbria as i got my dx the same day i was seen by the consultant he could tell from a physical examination, then he sent me for a scan not on the same day but i did,nt wait long this was just to rule out other causes, then my pd nurse visted me at home the following week and i see her every 4-6 months, i see the consultant once a year, the treatment you have had terri is disgusting a experianced neuro consultant should be able to tell you the same day, and any drugs they said they were going to give you, you should have got right away if my pd nurse alters my meds she just contacts the gp who writes a prescription right away i dont have to wait 7 weeks i dont understand why you have to wait so long for a dx i think i would be asking a lot of questions as to why you have no dx yet, stick in there terri chin up things will sort them selves out sue.
hi janey appointment next thursday cant wait need answers been on to the original neuro secutary today to get scan results not ready yet but she was very helpfull told me to see him private get quicker answer so now seeing him at his private clinic think it disgusting seeing him by paying gets me the answers quicker but never mind needs be lol thanks for youre helpxx
lilly thinking the same it is disgusting i am now going to pay the same neuro in a private clinic to get my answer quicker but hopefully it will work out they say u have early pd but dont wont to do anything till they have mri scan surrly they should have got it all worked out by now u only have to look at me to see it even my gp say theres no dowt but no still have to pay then go back to him on the nhs its a joke
Hi Teri,
I agree, its disgusting. When I was going through it I was told nine week wait for a scan. 'What if I am prepared to pay?' 'Oh, you could come tomorrow'!!!! This was a hospital in Suffolk (Not sure if I am alowed to give details). When I did finally get confimation that it was PD, I asked the consultant where do I go from here. He said go away and get on with your life. That proved to be the best advise he could have given.
Will be thinking of you next Thursday. If ever you want to 'chat' things over privately you can e-mail me.
Janey
I agree, its disgusting. When I was going through it I was told nine week wait for a scan. 'What if I am prepared to pay?' 'Oh, you could come tomorrow'!!!! This was a hospital in Suffolk (Not sure if I am alowed to give details). When I did finally get confimation that it was PD, I asked the consultant where do I go from here. He said go away and get on with your life. That proved to be the best advise he could have given.
Will be thinking of you next Thursday. If ever you want to 'chat' things over privately you can e-mail me.
Janey
Dear terri
Just seen this. I am very sorry to hear of the slowness you have experienced in being prescribed medication when your symptoms seem so disabling. My consultant persuaded me to try Azilect asap, as it can prevent worsening and why suffer if a drug can help. You should not have to go private, ask your NHS consultant should advise your GP to prescribe something to help you and get a whole NHS programme of support in place, ask for referral to neuro physio, OT, parkinson's nurse, etc, too.
I do hope you get the treatment you need asap.
Tilly2
Just seen this. I am very sorry to hear of the slowness you have experienced in being prescribed medication when your symptoms seem so disabling. My consultant persuaded me to try Azilect asap, as it can prevent worsening and why suffer if a drug can help. You should not have to go private, ask your NHS consultant should advise your GP to prescribe something to help you and get a whole NHS programme of support in place, ask for referral to neuro physio, OT, parkinson's nurse, etc, too.
I do hope you get the treatment you need asap.
Tilly2
Think it is today you see the consultant.This is just to wish you the best.
It has been a long week and I am ahead of myself.Best wishes for tomorrow.
hi english country dancer thank for your best wishes cant wait to get there had 4 falls this week hope to come out of there as much sorted as possible hope youre week is going ok xxx
hi lilly hoping to get sorted tomorrow here in london everything goes at snail pace so going private or i will go mad but then back to the same doctor on the nhs hope ur ok xx
Hi Terri, judging by the previous postings today is the big one for you.....hope things went ok. I too had to go private to speed up my dx, a referral from my Gp resulted in an appointment nine months away and I saw the same neuro within the week,just because I paid. To add insult to injury, I seen him privately for my first 6 months, every month and then when I changed over to NHS his whole attitude changed. No longer Mr nice guy oh no he became a tyrant, obnoxious, self important and generally didn't listen to anything I said. My appointments to see him lasted all of 5 minutes, very different to the 30-40 minutes, cup of coffee and a bicky when I was private. It shouldn't happen, but of course it does...who said that money don't talk?????
I understand the pain that your experiencing and its horrid, you might feel better when you get some drug regime sorted out. Don't forget though, sometimes it can take some time for them to kick in and take full effect. Also pd is notorious for being an individual condition so you may need your drugs tweeking until you find the right potion for you.
Hope all goes well, do let us know the outcome.
regards
Glenchass
I understand the pain that your experiencing and its horrid, you might feel better when you get some drug regime sorted out. Don't forget though, sometimes it can take some time for them to kick in and take full effect. Also pd is notorious for being an individual condition so you may need your drugs tweeking until you find the right potion for you.
Hope all goes well, do let us know the outcome.
regards
Glenchass
Thinking of you today.Hope all goes well.Do n't forget,however much you are expecting it, it still comes like a punch in the stomach.There is life after diagnosis,not the life you planned or expected but it can be a good life.