Hi I am pleased for you to Maddie. Good luck & take care, I hope you manage your panics too. Having an answer may help. When reading the description of being on a warm sunny beach with blue skies & hearing the sea thinking of the Seychelles that helped me & i'm just sitting on my sofa, but it relaxed me so hope it did you. In fact when I go for a walk I think of it & it helps me get to where i'm going.
This Dat scan? I don't know anything about it, its never been mentiioned to me. Can you ask for it or do you have to have certain symptons before your put forward for it? I am having a wretched time lately & I think it may help if I had one. I have had an MRI i'm assuming that is different!
I have recently noticed a tremor in my right eye & temple it seems to ebcom e worse when i'm tired or stressed which is a lot lately. My right arm is also really weak, yet another day it seems stronger??? I am so lost with it all.
I'm sure you'll get some feedback from other members. I just wanted to let you know that our Helpline may offer some insight into the new symptoms you're experiencing. They're available on 0808 800 0303 from Monday-Friday 9am-7pm and Saturday from 10am-2pm. Please feel free to call them if you need to.
hI, I am too waiting for a scan to confirm diagnosis. My dat scan should be at Addenbrooks but no date as yet. i can understand how you must be feeling. Waiting is so hard. We shouldn't have to keep chasing up but sometimes we have to. I really hope they get your scan sorted soon either in Oxford or an alternative. Meanwhile there is a lot of good advice on here I've found and I'm sure a lot of caring people. Good luck with the scan!
Oh dear I think I've lost the plot and replied to someone's post and not seen the updates. Apologies!!! So new to this. Maddi23 really pleased for you re scan. Good news. Goodness I hope I've got it right this time. sOmeone mentioned also that you can lose taste. I lost my taste and smell nearly 7 months ago and at the same time roughly experienced a tremor in left arm. Hoping scan date soon. I need it confirmed or not.
Thank you so much for your reply and helpful advice, I will definitely contact the help line for some advice, i'm sure they will help me understand more what's going on.
As someone waiting for confirmation of diagnosis I have been reading about other peoples symptoms. It surprised me at the difference in symptoms people have. Not everyone is the same. Can I ask if anyone has lost both taste and smell? i have had this and the tremor along with a few extras thrown in. Waiting for dat scan and Mri. I still work but am finding I am totally exhausted at times and find it hard getting going in the mornings. iM 56 and have a supportive hubby and family.
My wife has most of your symptoms, she lost her sense of smell 19 years ago and diagnosed 2 years ago. Her taste is fine, like you she is very tired most of the time she has just retired because of the Parkinsons. Lexi255 my wifes tremor settled down a lot after taking sinemet plus
Thank you both. I really appreciated your replies. Part of me feels her diagnosis may be wrong but I know there is still that possibility. Will certainly let you know once scans done. Found tonight at work that after a bit of stress my tremor seemed worse.crazy!!just have to wait now and see. Night everyone.
stress is the thing our condition cannot cope with my first experience of it with some idiot in the pub argued with me over a chair all of a sudden hubby cried Karen look at your arm!!!!!!!! off which the tremor had gone into overdrive.
Yes that's what I find. Trouble is it could be due to my shoulder problem. Will see outcome once dat scan done. No date yet. Thanks again for your help.
My hubby was originally told that he had a trapped nerve in his shoulder and that was causing the tremor but following a Datscan he has been confirmed with early onset Parkinsons, he is 44. If you are diagnosed it seems crazy but you will feel be scared but relieved and you will get support from the wonderful people on this forum. At this time last year we had no diagnosis and my hubby was quite poorly and desperate. One year on we have treatment, diagnosis and a returned sense of normality, although life has changed but not in a terrible way. We are learning to cope, take each day at a time and appreciate the positive things in life.
My hubby's tremor goes wild when he is annoyed, tonight we were watching homes for heroes and when the presenter said that the gentleman who had lost 3 limbs when he trod on a bomb wasn't supported by the army anymore my OH got so angry and his arm really began to shake, I said to him if I give you a set of knitting needles you will have done me a jumper before the end of the programme lol
hi BB haven't been in touch for a while hope you are well, we have first appointment with Parkinson's nurse (after much chasing) tomorrow, will keep you posted.
Hi I feel relieved to know I can ask for a Dat scan, (I do hope I won't be refused it) I am pretty down right now, suddenly things seem to be creeping up on me. I have been shopping today, & made a right fool of myself! I got in a muddle when paying, I couldn't get my card out my purse, & could hear people behind me tuttering & complaining about me. That seemed to really make me agitated & thumble even more. I guess I should organize myself more when going out, & get a larger purse now. I even found myself stumbling with my words! Talk about mumble jumble!! God what on earth is happening lately! I have never felt like this before when shopping. The lady moaning made me feel so bad! I heard one lady make a remark about what's wrong with her. "It quite upset me" I'm normally ok with shopping, just slow at packing & paying. But my speech is normally fine!! Perhaps its just today!
Thank you all on here for your advice, help, & support. Its so reassuring knowing we can learn from what is posted either in response to our post of others. & learn how others deal with situations & take it on board what to do. I have been under a lot of stress lately (due to family issues) & i've noticed since this my pd has felt worse. I've become flustered more, & tired, & as said earlier noticed this tremor in my eye? & temple & arm. I'm ok when calm. Can you really get tremors in the eye??? Or is it just a nerve??
I just can't get over how some people treat you just because you get confused or struggle to get things out your purse!!!
Thanks again & thanks BB for letting me know about the Dat scan & MRI. & that stress will make things worse.
I had a neuro appointment for the 7th Oct. but had a letter in August saying due to unforeseen circumstances it is being cancelled & they will send me out another one, i've not as yet had one, & haven't got one lined up as yet with my PD nurse either so this site & friends are a godsend. I think I will chase the neuro appt. as i'm scared I will be lost in the system, it won't be the first time it has happened to me.
One good thing I now know how to send private messages on here & if sent one receive it, so that's good.
Hoping alls well with you all & wishing you all the best. Take good care. xxx
The mri scan does not confirm a diagnosis,you need a datscan for that,an mri is used to rule out other things,I had an mri first followed by a datscan (its painless) Hope this helps Anne
Hello there, I have an mri in November and meant to have a datscan too. The lady I spoke to on the phone today in the ct dept hadn't even heard of dat scans!! Can I ask you who referred you to a pd nurse? The consultant didn't mention meds or pad nurse to me so perhaps she's waiting for scans. Who knows but I don't want to be worrying about it either till my Feb appt. like you I am finding this site so helpful.
Thank you Anne I wasn't totally sure and really don't know if she's referred me yet or not. Just need to know the outcome. Oh and do u know how to get my photo the right way up!!!!! Trust me to get it wrong.
If you mean your eyelid, it was one of my first symptoms and I knew it could be something neurological but could also imagine the reaction of the GP to this and other "funnies" that were going on. The same eye doesn't open for a while after I have been asleep. Getting flustered is certainly a common PD experience and seems to feed off itself like panic attacks so if you can adopt a "....you" attitude to these unkind people it may help. I'd love to know what exciting places these people are bound for who haven't a second to spare at the check out.
Hi Eileenpatricia,
Thanks for your reply, yes I know what you mean I thought the same thing when I could hear the mumbling behind me. Do they really need to be somewhere so quickly, I wasn't even taking that long, I was just flustered & knowing they were annoyed with me made me worse. My hands & fingers were shaking & I couldn't get my bag opened quick enough or my purse out fast enough. Thank god I didn't drop all my loose change that really would have gone down well. People today!!! I think now I have this pd & small symptons seem to be creeping in more I will need to toughen up & not let people worry me.
Yes I think it is my eyelid, although it feels like its my actual eye & I get it in the side of my head (my right temple) It seems to start when I get stressed, also my right leg & arm. I have been under a lot of stress, now I know that makes things worse I will concentrate on keeping calm. I have started to do some light yoga that seems to help.
When you read different post it seems everyones diagnosis is so differently handled. I guess it depends on where you live. I have never been offered a Datascan, its never even been mentioned to me. I have heard of people with PD symptons saying that they have been told by their consultant that their going to moiniter their conditions for at least 2 or 3months then do a scan then confirm a dx & then issue medication. & arrange for them to see a PD nurse. My dx was nothing like that. I wonder why PD seems to be so different to dx & sufferers seem to all be dealt with so differently. You would think there is a set procedure that the NHS follows for all.
Thanks again Eileenpatricia. Take care Rita.
