Update


#1

Good and bad I suppose. I had a letter the other day that the neuro had sent to my GP basically saying from my consultation with him he thinks its psychogenic, I think cos he got notes from years ago from Kings when the paralysis got bad and they didnt seem to believe me back then. And then I got a letter saying my brain scan and blood tests results came back normal... so now I just feel crazy =( so doesnt look like theres much chance of me getting any help. I have been doing quite well lately though, Ive been able to get out and get dressed up and seen people Ive not seen for about 7 years!! I have people telling me I look great and stuff which is nice and Ive had a brave moment today and actually signed back up to a couple of modelling sites again, I did a little bit years ago and I thought Id see what happens, eek! Ive been going to the physio gym at work (I work in a hospital) once or twice a week just trying to use my legs really, I cant do much or proper exercise but Ill hopefully increase my strength, I get jelly legs very quickly though hehe! Hope everyone is doing ok x


#2

 

I wouldn't let that knock you down Suzy.

For year's my Girlfreind has been ill, they told her for year's she had migraine head ache's, and guess what every doctor read the first page  of her notes and didn't read any further than the word 'migraine'. i have sat in with her on many appointments in gp's, by her hosptital bed, whilst she fitted on the floor in my house and blue lighted in the back of a ambulance several times too a hospital. and it turned out too be Not headache's at all.

And guess what??.

My m.r.i came back normal too and the blood tests as well, just like many folks.

we have good day's dont we, we have bad days.

Stick at it Suzy and dont take that for a Answer.

 


#3

Thanks =) Yeah I had read that scans and blood tests dont always give a Parky diagnosis but just the fact I can be so ill yet the tests show nothing does make me feel crazy! If the neuro has got it in his head its psychogenic and the tests appear to back that up I dont know how helpful hes going to be! I know theres a chance it could be psychogenic but I feel more like theres a physical illness that is made worse by emotions etc. I can get paralysed or get awful muscle spasms when Im perfectly relaxed and happy and I dont know how I could have a tremor all the time! Thanks for your support x


#4

Hi Suzy, I am still undiagnosed with normal scans and it is so frustrating when you know that something is not right. On the letter that your neuro sent to your GP did it mention how to proceed further. At the end of mine she stated what she wanted to be done, memory clinic etc. flo


#5

No he didnt say anything, just that he would see me at my follow up appointment which is in february =(


#6

I know I only know you through your posts, Suzy, but I cannot believe your severe symptoms are of your mind's invention.  I agree with Sea Angler:  don't take that for an answer!

When my son was about seven years old, he began complaining of stomach pains.  The doctors, one after another, didn't believe him, thought he was trying to avoid school or had an emotional problem.  But I knew better and had faith in him.  He could get sudden pains even when he was in the midst of playing a game or reading peacefully.  It took months, but we finally got the answer at Stanford Children's Hospital in California.  He had abdominal migraines, something none of us had ever heard of before.  Fortunately, they are only a childhood affliction and disappear at puberty.  But there are many medical cases like his and possibly yours that require lots of time and lots of doctors to be resolved at last.

I wish you that resolution to your problem!  You may need to look further afield in the medical world to get an answer.

J


#7
Thank you all for your support, I really appreciate it :-) yeah it doesnt right to me and I know my body better than he does! I hate feeling like someone doesnt believe me though

#8

I am sure someone will correct me if i am wrong but  when my neurologist said he was more than certain i had parkinsons i was sent for blood tests   and a mri scan , my neurologist told me the blood test was to rule out wilsons disease which he was sure i did not have  , a mri cannot detect parkinsons  a mri is done to rule out other possible causes so the fact that your mri was normal  does not rule out parkinsons there are really no definative tests that can detect parkinsons if there is doubt usually a neurologist will do  a levodopa test , if you respond to levodopa then  a neurologist will suspect parkinsons

From what i believe the only scan that can help diagnose parkinsons is a dat scan


#9

Hi Suzy Shelly is right . Ask if you can have a dat scan . Could you get a second opinion ? Keep trying to get some answers . Best wishes 


#10

I had a dat scan

in the words of the neuro too 'confirm or deny' parkinsons as the cause of my tremor.

As it turned out it confirmed in both 'spheres' of my brain.

Before i had a scan i knew i could feel something was wrong.

A dat scan would and should be the next step for you suzy.


#11

I was never offered a dat scan , but my neurologist seemed more than certain i had pd , then  a few weeks after i was diagnosed  my mother also was diagnosed with pd my neuro then  put mine as familial parkinsons so i guess there was no point in having a dat scan when he was sure of his diagnosis


#12

I was referred for dat scan wasn't actually asked if I wanted the scan but when MRI came back clear neurologist said that was next step although he was pretty certain he knew what problem was from day one . I suppose they get to know the symptoms through experience . There is no one in my family with pd but my nan was very shaky couldn't write for years . My aunt and uncle same bloodline are the same . Maybe just not diagnosed . My neuro has suggested genetic testing . It must have been a very difficult time for you and your mum and family shelly . I am still trying to get my head around it all as its only been about six weeks . Find it really helpful talking to you all . Family and friends mean well but they can't understand like someone who's in same situation .