I'm feeling absolutely desperate and don't know what to do.
I had my first neurology appointment on March 12th. In the last minute of the appointment the neurologist dropped the bombshell that he thought I had some form of parkinsonism and arranged for me to have a DATscan. No information or assurance, other than the fact that it was treatable was given to me and I was told that I would get a follow-up appointment in June. I had the DATscan on 23rd April. At the end of May I still didn't have a date for the follow-up appointment so I contacted PALs, who managed to get me an appointment for 8th July (I got the letter last Saturday). Today (a week later) I've got a letter cancelling the appointment with no date for an appointment - just saying that I'm back on the waiting list.
I feel totally desperate - I'm not getting any treatment, I don't know whether it is parkinsonism or not or if it isn't then what the hell is it? I'm 43, trying to hold down a job (teaching), be a mother to 2 youngish children and I'm becoming increasingly disabled. My GP doesn't have any idea of what the findings of the scan are - they've had a letter saying that the blood tests were within normal range but they were to rule out other conditions. My walking pace is now down to about 1 minute per 10 metres and I struggle to get 20 metres on crutches. My neck and right shoulder are giving me constant pain and it is affecting my breathing and swallowing - I'm living on muscle relaxants and strong co-codomol and my writing has become painful and tiny and I have got constant muscle twitches and cramps. It is also affecting my eyesight, sleep, temperature control and various other things.
If it wasn't for my children I would just take the rest of the tablets that I have and get some peace - I can't go on like this - It is 2 years since I initially started being bounced from one consultant to another and things have deteriorated so much in that time. I really don't know what to do.
I'm really sorry to hear what's going on. It is a surprise to hear that after PALS got on the case, the appointment was cancelled yet again with no explanation. It's understandable that you're feeling the way you do.
Tomorrow morning both our helpline and PALS should be available to talk to you. It would be worth giving a ring to both to see how you can move this process on.
Hopefully, you'll be able to get the attention you're entitled to soon.
I've emailed PALs so I'm hoping that they will be able to do something. I can't manage to get to the phone at work and I need to keep going and can't take time off - my employers have been a nightmare and I don't want to give them any more excuses to put pressure on. I've also left a complaint on the hospital website. PALs have been great but it seems that the admin system appear to be complying and then immediately cancel - I really need answers and treatment - I've been doing everything I can - doing the physio, been to several osteopaths, keeping moving as much as I can and seeing a private psychologist to deal with the stress but the overall effects are getting steadily worse and I'm frightened about how quickly I've gone from being VERY fit and active to not being able to get further than 20m on my own. My occupational therapist (the one department I have dealt with who have been fantastic) wants me to go for a wheelchair assessment and I've been putting it off as the appointment was within sight but it looks like I'm going to have to give in and go for it - I don't know whether I am pinning too much hope on the treatment making a big difference or not - I'm hoping that I'm going to get close to being back to normal, for a few years anyway. Every time I get really optimistic I get knocked back again - a week after the DATscan I had a really good day and could walk almost normally again and I thought that I was going to be OK - the next day I was back to being rigid again and I haven't had a good day since. The effects are slightly different every day and also at different times during the day so I don't know what is going to happen. This is at the same time as trying to teach teenagers - sometimes all day. I love teaching but I don't know how much longer I'm going to be able to carry on if I don't get something that helps. I'm having to take more an more muscle relaxants as my chest muscles seize up and I find it difficult to breathe and my GP won't amend the prescription until I see the consultant.
Major long whinge there - sorry, I just needed to get that off my chest.
You are being treated apallingly!Perhaps if going through the right channels doesnt work you should go and sit in A&E (on a weekend so you don't miss work!)and not shift until you see a neuro.....not the correct way to do it but your degree of increasing disability deserves priority attention.
Very good wishes.....
I could have posted the same comment as Sallymac. Shocking treatment or rather lack of. If it is of any comfort, they prefer to diagnose people in an unmedicated state but common compassion demands that your situation be given some priority or at least some explanation of the delay which you can give to your employer who is bound by law to make adjustments to the workplace (schools included) However, others could advise you better than I on the workplace. See the thread on this forum for Employment issues at the bottom of the Forum home page. I was seen within six weeks of referral for right sided tremor although there were other signs I had not told the doctor about.
The following is lifted from the NHS NICE guidelines for the diagnosis and treatment of PD from the time when PD is suspected
: The Guideline Development Group considered that people with suspected mild PD should be seen within 6 weeks but
new referrals in later disease with more complex problems require an appointment within 2 weeks
Although you are not new exactly and not nec.in later disease, I would have thought that the wording above indicates what they feel are decent timescales for people with troublesomd neurological symptoms and that you are not expecting too much to be seen sooner rather than later with the symptoms you describe many of which I recognise as commmon PD symptoms although I hasten to add my only qualification is that I am a PWP myself
This link takes you to the short version of the NICE guidelines and if you google you can also get hold of the long version http://www.nice.org.uk/nicemedia/live/10984/30085/30085.pdf
Do also use the Helpline as Ezinda said. They deal with clinical and welfare issues and are very helpful.
Thank you very much. I now have an appointment for a week later - the moderator of the NHS choices site and PALs and the medical secretary of my GP practice have all got involved and sorted it - it is still a month to wait though but at least I know when it will be. Apparently it got cancelled because the consultant has decided to take leave that week!
I need to decide whether or not to ask for the wheelchair assessment - if it is definitely PD (not much of a tremor, except when I'm very stressed but I have really bad bradykinesia, rigidity and dystonias and the prelim diagnosis was based on my handwriting becoming tiny) then how effective is the medication in reversing symptoms? Am I likely to need a wheelchair when I start on medication? At the moment I am really struggling to walk, even with crutches but I'm hoping that will go back to normal. I'm fairly ambidextrous so I can write reasonably well with my left hand and that is normal size - why does that happen - I just don't understand what is happening to me. If it isn't PD then what on earth is it? I have so many questions and they are all reliant on a diagnosis.
I have had the union involved at work and every time they ease up on one thing, they put pressure on in another way - it is really rather wearing but I'm determined not to let it beat me - I get the feeling that I'm trying too hard at the moment and it isn't leaving me with any energy to actually teach and deal with some of the more difficult kids that I have.
Thanks again to everyone - I will ring the helpline as soon as I get time - I have a full timetable and a parents' evening this week. It's also a bit difficult to know what to say when I don't have a definite diagnosis.
If the diagnosis is PD, there is an excellent chance that medication will improve your symptoms, although it can take several weeks to take full effect.
Please let us know how you get on.
Very best wishes
Sorry to here about your problems, seems that PD services are a bit of a lottery, my consultant rang me within 10 days of having the scan. Lets hope you get an answer soon, not knowing is more stressful that knowing.
........and here we go again, yet another victim of the so called professionals!! i am so sorry to read your post, please be strong. It seems this is becoming the norm why oh why? younger people do not get the right help, support or advice. come on PD.org help us to help each other.
oh and I do know the issues because i have been there and to some extent still am.
my heart goes out to you, best wishes and hoping things finally get sorted
My GP rang me today - the DATscan was normal so I'm back to square one in the hunt for a diagnosis - the consultant seemed so sure it was PD. The hope that they had found the answer and that I would get some treatment was keeping me going - I now don't know what to do, I feel so hopeless. The lack of diagnosis isn't stopping the symptoms progressing and I've got a bad feeling that work will continue to ramp up the pressure now that there isn't going to be a solution any time soon. It also means that I don't have a support network as I don't know what's wrong with me.
To the best of my knowledge a datscan is used as an aid to clinical diagnosis to rule out
other possibilities. The diagnosis of PD is based on clinical observation. They are still searching for an early definitive test for PD.
If the symptoms seem to indicate PD they sometimes try Sinemet plus (whatver age you are) and if your symptoms improve that's another pointer. Is your neurologist a specialist in movement disorders? This is not always possible but given the information you have provided you might want to check out his credentials, or perhaps your GP might do this for you?
See PD UK information sheet which you can download http://www.parkinsons.org.uk/advice/publications/about_parkinsons/diagnosing_parkinsons.aspx
I've just read your post again and it seems that it is your GP who has drawn the conclusion that a clear datscan means no PD. Most GP's will admit to knowing little about PD as they do not come across enough patients day to day.
So you might be hearing from the neurology dept. or you could even ring the neuro's secretary and see if a letter is in the post to put your mind at ease. It can take weeks for letters to be processed from the neuro's even if it is much needed changes in medication
The consultant that the GP referred me to is a movement disorder specialist - the one the hospital allocated isn't and I only got to see a registrar and and a locum consultant when I went. The letter that the GP read to me from the hospital said that the scan indicated that it wasn't PD but I won't know any more until my appointment. I'm really not coping with this very well at the moment - I had to go home from work after the phonecall as I was in pieces - every time I get optimistic that they've found the answer I get the rug pulled out from under me and they aren't giving me any information about where we go now.
I`m really sorry you are having such a dreadful time. I`ve checked back through your posts and can`t see whether you have decided to go for the wheelchair assessment.
I think you really need a chair now. If you could have a wheelchair now and return it when you no longer need it would that be your choice? Well, that is the position we are in through social services. They have given my OH a suitable wheelchair for free for as long as he needs it. Then we can return it and have it replaced by something more suitable or just hand it back and say thank you very much. Social services arrange servicing and repairs, there is no charge to us.
I hope this is some help.
Hi Emilyisobel, sorry you're having such an awful time of it. What a worry and frustration for you. I had my DaT scan in March this year at 45 yrs old. My neuro (who is a PD specialist) told me that it is the only "test" available for PD, BUT it is not always accurate. He said both false positives and false negative results occur with the DaT scan. Mine did conclude a PD result, however, if it hadn't on clinical examination alone he would have gone onto do a trial of levodopa to aid further dx. ie if symptoms improve on l-dopa that proves an ideopathic PD dx (or possibly a PD plus dx though these don't always respond as well to l-dopa, if my memory serves me correctly.) I never got to the l-dopa trial stage and am being treated with an MAO inhibitor and a DA so far but I think this l-dopa trial is a question you should have at your next appointment when you finally see your neuro. I presume you've already had a head (and neck) MRI to eliminate other possible causes? Good luck.
Hi and thank you,
Only just over 2 weeks to the appointment now - just a few days and it seems so much more manageable a wait.
I have decided to go for the wheelchair assessment - work are kicking off about my speed around the school (or one member of management) so it would be more practical - not sure how wheelchair friendly the school is though - there are 2 sets of stairs to get to the disabled toilet in the building I work in and I'm not sure if I will be able to get through some doors.
It's kind of comforting to think that the DATscan can be wrong - it's getting to the point where the list of progressive things with the same symptoms is shrinking and MND is still on there, which is scary (this is one time where being a mathematician and understanding probability is a real disadvantage!).
I need to pin them down to some answers or at least a plan of action now - I am willing to give anything a go in the hope that it will improve things. I don't know what the blood tests they did were for - I wonder if they have tested for Lyme disease (although I have no recollection of getting bitten by a tick), someone has also suggested that it could be Isaac syndrome as I have very strong muscle fasciculations in my legs and sometimes other areas (anything but MND please!) I really need the MND one laying to rest, I think I can cope with anything else. It was a shock but also almost a relief when the doc seemed so sure it was PD.
I am just completely confused by the whole thing, nothing makes sense - I spent some time this morning trying to write without looking in the hope that it would increase the size of the writing - no dice. I also realised yesterday that trying to walk and do something else at the same time is silly - I was looking at my daughter's finger (splinter) while walking her into the light and nearly went flat on my face - my brain is still expecting me to take full sized steps and I feel like I should be able to do full sized steps but they just don't happen - luckily the exercise bike was there to break the fall.