Square one


#1

Hi. I just knew I'd end up back at square one. I've been waiting for a scan since June. The scanner in Oxford is broken. They don't know how many weeks it will take to fix so are not booking apts. They suggested the best thing to do is go back to the consultant and ask for a referral to another hospital (in my case London)
I'm not a happy camper. My anxiety is high and now I'm feeling depressed.


#2

Sorry, I wrote the above without any background. I was dx last June and have been waiting for this scan ever since. I have not been put on any medication in the meantime. I am having problems with the tremors and balance. I suffer anyway with anxiety and depression. The dx has left me feeling very frightened and alone. I don't know how it will progress but know I've had some of it for a couple of years.

I've been in touch with everyone I can think of and finally have been told that the machine is broken. With no idea when I will receive treatment or support  I'm trying to put together my own diet and exercise plans. Does anyone have any suggestions please?


#3

 

Sorry you've had this experience Maddie

I did look at the distance from oxford too addenbrookes when you said about looking at london for a scan but it's further 97 miles where i had my scan, i guess many of the scanners in our hosptitals were installed around the same time,  i remember a screw or something rolling inside the one at addenbrookes every time it turned the operator wasn't too fazed about it.

the only thing i can suggest is giving your Neuro a good push, yourself or someone like Pals you shouldn't be left in limbo without  treatment when you want and need it.


#4

Hi Maddie,


Sorry that you are feeling low at the moment. We have a number of publications on the website that might be of some help to you, including booklets to help you with information on diet, exercise, anxiety and depression.


Also our helpline is a good place to talk about your experiences, chat about how you are feeling, and will be able give you advice on your situation on 0808 800 0303.


Best wishes to you,


Min


Moderation Team.



#5

hi maddie,

sorry to hear about this my recommendation would be to ask to be refereed to another hospital and as you said London i recommend UCL over the road from warren street tube i had my dat scan there and they were very professional.

hears hoping you have some luck,

 

best wishes BB


#6

Thank you everyone. I'm hoping to hear before the end of this week what the consultant has decided to do. It's hard not to feel helpless and depressed, but I've signed up for a dance and a singing class. I'll go it alone for now if I have to and follow the advice on this site.

Is losing your sense of taste one of the symptoms? I'm only tasting really strong flavours.


#7

 

I think yes it could be a symptom, taste is on our tongue?. i make too little saliva,eating a meal with grandfather he says that tastes & smells loverly, i couldnt taste or smell much of anything, my dentist a couple of years ago before i knew i was ill pointed it out not making saliva(you cant taste without saliva apparently), and asked had i been screened for sjogrens disease?, but then i read people with pd make too much or too little.


#8

Is losing your sense of taste one of the symptoms? I'm only tasting really strong flavours.

 

I am afraid the answer to this is yes it can go both ways and can effect sense of smell as well mine went super strong as a reaction to the slow release pamipexole to the point my specialist ask if he could write a paper on it. Of course i agreed without us agreeing they would never learn enough to get rid of this condition.

 

bb xx


#9

I'm still waiting. No word about the scan from either the neurologist or my GP. No mention of trying any meds either.

I was trying to be really positive about this, but now I'm feeling depressed. I can't think of any way to find out what's happening. Anyone any  ideas please.

 


#10

Thanks for your response Bettyblue.


#11

Hi maddie23,

I'm sorry you're feeling anxious while you wait for news. If you call our Helpline on 0808 800 0303, I'm sure they'll be able to offer you some helpful advice about your situation.

Best wishes,

Edwina

Moderation Team


#12
Ring the neurology secretary and ask say you are not coping with not knowing bbcx

#13

 

 

 

Still no word on the scan and no new appointment with the consultant. His secretary is going to "chase it" AGAIN.  I've been doing everything I can think of to distract myself and stop the depression creeping in. I feel tired all the time but I can't just let myself retire to bed all day.

 I took the first step and have joined a singing group (to keep my vocal chords strong) and a movement group. I'll start both next week. I have someone to come to the singing group with me but I'll have to go alone to the other. Being agoraphobic going to them is a big step for me and my anxiety is increasing daily. I know I'll get to the singing one with my friend. I'm going to have to somehow overcome my fears to get to the movement one.

 


#14
You can call the helpline on this website for advice and support one other thing is the longer you wait for scan results the better pd cannot ne seen on any other scan than a dat scan do if u had a mti or ct scan it will only rule out other similar conditions xx

#15

 

Hi Maddie

While you are waiting perhaps you could contact your local support worker who will call on you to ease any anxiety you have if you have suspected parkinsons or you could visit a local parkinsons group, look under 'Support for you' on this website then scroll down to see where you put in your postcode, then that will tell you if there is a group near to you.

All the best Sheffy


#16

Still waiting. 

I've contacted my local support worker and she is coming to see me next week. I'm hoping she will have some news. I'm getting very depressed about this, so my symptoms are getting worse. Also now my throat feels tight and my voice is deeper. I lose words or stumble on them when I speak.

I've joined a Parkinson's singing group (pity the others). I have a Mental Health support worker who is going walks with me. She's going to introduce me to a gym.

Can anyone think of anything else I should be doing whilst I'm going it alone?


#17

Hello everyone I haven't been able to be on here for some time. I just caught up with some post. I hope everyone is coping with their daily lives as best they can. And alls well.

I have been reading your post Maddie23, i'm sorry your having such a difficult time & becoming so anxious. I too suffer with anxiety bad & panic attacks/agoraphobia, and have found the last few months quite tough too. I am sure your support worker will be helpful to you & give you some reassuring words. Unless you suffer from bad anxiety/panic attacks & agoraphobia its hard for people to understand how draining it is for you to cope with things. Its an extra burden to deal with & can make dealing with everything seem harder.  Parkinson's.com will be very supportive for you Maddie. Don't worry about calling them, i've found they have been very helpful, you feel comfortable to talk with them and they do understand about panic attacks etc. Having agroaphobia & panic attacks make it harder to join in with people & groups which we all need to do, but its a battle when having these problems. I have found that the hardest thing for me is finding people who understand what its like when you have panic & agoraphobia problems. Thank goodness Maddie it sounds like you have a good friend there that will be supporting you with your singing class, & i'm sure your support worker will help too.

I am always baffeled how my pd was diagnosed so quickly almost within 30mins, & i've had no dat scan. I was diagosed & put on medication straight away!?? It is a real concern for me when I keep hearing how everyone seems to be moinitered for a period of time before they have a dat scan or put on medication?? 

I keep being told by people I know & friends etc that it doesn't sound right to them, but i'm lost like you a bit Maddie, so I just do as i'm advised too & take what i'm told!  That's another thing about having panic & agroaphobia, for me anyway, I will just accept what i'm told & do as told rather then get into things to avoid more appointments & having to visit places alone. You feel very vunerable!!!

I hope you will receive your scan soon Maddie & i'm sure you have found nice helpful people on here to reassure you too. Your visit with your support workers will definitely be helpful, & do give Parkinson.com a call if you ever feel you need too, I have when i've felt desparate to talk with someone & they have been there.  Take care Maddie, & as I suffer with the same probs, i'd like to say a big well done to you for booking your singing & dancing classe's up that is really a great move forward. I know how difficult that must have been for you. Good on you & enjoy it. Your obviously a strong minded lady.  I have just started physio & I find that an ordeal. Plus i'm planning to move to a quieter area where hopefully my medical advice & support may! be better. Our nurse's & doctors work so hard & have such a lot to cope with. Best  wishes to you Maddie23 & everyone. xx  


#18

Dear Autumnleaves

thank you so much for your reply. Everyone on here has been very friendly and supportive but it helps to hear from someone who understands the panic and agoraphobia too.

I hope your move goes well and you get the medical advice you need.

Good luck. xx


#19

This is unacceptable.  I dont know where you live, but I would also suggest asking your GP to refer you to an alternative hospital.  I was diagnosed with PD without a DAT scan which is what I imagine you are waiting for.  They should be able to tell quite accurately whether or not it is PD - the scan was just confirmation.

I can see no reason why you shouldnt start trying meds.  I know it is difficult, but perhaps you need to insist that you see someone without further delay.  Is there anyone you could take along to your GP with you for moral support?

As you can see from my user name, I am from Oxford and have also had problems with the service.  Please do feel free to contact me if you would like - I am always happy to offer support.  I was diagnosed 12 years ago whilst still relatively young, but am still keeping going albeit it more wobbly now.


#20

Thank you Maddie, you take good care. I am sure you will find all the answers you need to help you. Parkinson.com is a great site.

Good luck to you too with your singing & dancing class that sounds fun. Enjoy it. xx