diagnosis

[Inactive_User]

@cinderellaslipper

Hi Poll

Know how you feel am in the same boat. I can trace symptoms back 40 years to when I was 10 years old but have only been going to docs with all this for 25 years and am about ready to thump one of them.

I cannot wait to say ‘I told you so’ and perhaps make an official complaint to the GMC about my GP’s lack of knowledge. Probably won’t do any good but it will make me feel better.

Don’t know about you but I won’t get any peace of mind until I get a diagnosis. I honestly believe that I will feel so much better once I am believed and ‘it’ has a name. It really is a living nightmare. I have not been offered a LP or even blood tests so those are my next fight.

All the best Poll, thinking of you. Dianne x

Hi Dianne, 40 yrs…25 yrs? My goddness! No, like you, I wont find peace of mind until I get my dx. During all the years and all the different neuros Ive seen, I did have peace of mind from 2003 - 2010, when I was given a 95%dx of PPMS. Then that total waste of good skin neuro, who decided I had HSP (and then changed his mind, didnt tell me) skulked off to another hospital, to turn someone elses world inside out.

i am trying to find out if Ive had a test for Lymes desease. It is caused by an animal tick which burrows into your skin. In later years it can cause all sorts of neurological problems. Guess what? A tick got me when I was 5!!!

Arrrggghh…ready? Join me in a loud aaaarrrggghhh!!!

luv Pollx

[Inactive_User]

@skippysprite

Hi Poll

I wish these numpty neuros would understand just how frustrating

this must be for you, beyond a joke now.

Do you have to wait until October to get the results of your LP,

surely they could write to you before then?

Sending you some (((((((((((hugs)))))))))) and flowers to

help cheer you up.

Pam x

Hu buddy, reading my replies on this post reveals how bad all those like me without a dx, are feeling.

I may get a letter before the Oct appt. I was told it takes 6-8 weeks to get the resutls. I just hope it is there when I go or I will FUME!

Your continued support is soooo appreciated love.

luv Pollx

[Inactive_User]

@Samantha72

Hi Poll, I really understand how you feel, like we all do. The last time I felt ‘well’ was when I was about 17, that was 23 years ago. I am beyond sick and tired of being just that. It upsets me so much that you have had to wait too long for someone to tell you what is wrong. I know this area of medicine is complex but surely, 14 years?!! I am only 6 years into having Neuro symptoms and I am already so nervous about my first appointment with a Neuro. I am petrified that it will follow the pattern of medical fob offs I have received my whole adult life. I know my little rant is of no use, sorry, I just wanted to say that I truly hope you get answers soon. Sam x

Thanks Sam, for your support…it does help you know.

How come you`re only seeing a neuro after 6 years now? Have you got a date yet? Good luck when it comes.

luv Pollx

[Inactive_User]

Hi Poll, when I saw this post in the new diagnosed section my heart missed a beat because I thought you finally had a positive diagnosis . I have only been ill since January this year and it’s doing my head in, so can’t image how you must be feeling!! What on earth are they playing at. Even if your tests are coming back negative can’t they diagnose based upon symptoms and frequency?? Maybe I am being totally ignorant on this but to leave you in limbo for so long can’t be doing you health any good on top of the symptoms you have. Sending lots of love from a fellow limbolander (a newby at that!) xxx

[Inactive_User]

@Kirstie N

Hi Poll, when I saw this post in the new diagnosed section my heart missed a beat because I thought you finally had a positive diagnosis . I have only been ill since January this year and it’s doing my head in, so can’t image how you must be feeling!! What on earth are they playing at. Even if your tests are coming back negative can’t they diagnose based upon symptoms and frequency?? Maybe I am being totally ignorant on this but to leave you in limbo for so long can’t be doing you health any good on top of the symptoms you have. Sending lots of love from a fellow limbolander (a newby at that!) xxx

Thanks Kirstie. Yeh, I know, it must be scary for newbies like yourself, to read how I and many others are still in limbo after many years.

I was dxd, well a 95% dx, with PPMS between 2003 - 2010. Oh how i wish theyd have left it at that. My hubby is sick of hearing it, but he`s not as sick as I am of having it…whatever it is!

Hope your wait isn`t anything like as long love.

luv Pollx

[Inactive_User]

Our time will come soon poll!