How long have you all waited before diagnosis??

Hi I’ve had symptoms for 30+ years but after inital tests 14yrs ago I haven’t done anything about them for a very long time as I was told I was suffered OCD and depression ( I was neither of these things) finally they decided I had fibromyalga. Thats were I left it but since then lost hearing in one ear and the pain and tiredness has increased. Has any one else has symptoms this long before diagnosis??

Hello, I have been suffering for 23 years mainly from debilitating fatigue. The last 6 years have seen things turning neurological. Looking back now, I really should have been taken seriously by the GP. I was just thrown on the anxious/depressed pile, which I am clearly not!! I was finally referred to a Neuro a few months back and I can honestly say I now have Sherlock Holmes on the case instead of Inspector Clouseau (as much as we all love him!) Keeping an open mind even though he found some abnormal signs during the clinical exam. Awaiting MRI results. Time will tell. Are you going to go back to your GP about your current symptoms? Sam x

The time it took me to get diagnosed is mostly my own fault: my first symptoms were when I was 19, but it wasn’t until I was 32 that I actually saw a GP about anything. I was diagnosed 15 months later (14 years ago).

Karen x

Thanks for replies. I have an appointment 27th December. I have requested my notes as I was told 14 yrs ago that mri was normal and nerve conduction test was atypical but what has set me off this time is the repeated reoccurance of symptoms pins needles, numbness, fatigue, pain, trembling, balance issues, bladder probs and most recently hearing loss also I went to see consultant about another unconnected isssue and he was looking through my notes and the first thing he said was I can see from your notes u have MS so its got me thinking again. I just dont want to fobbed off again and made to feel Im making a fuss.

Hi, well maybe you`ll get another MRI, seeing as your first was so long ago.

I hope your results paint a clearer picture.

I know how distressing it is to be left in the dark for a long time.

I have had problems since 1998. I was told I probably had PPMS for many years and in Oct, this year, was told it isnt MS afterall…but ISP, cause unknown!

luv Pollx

Horrible being in limbo my boss is getting cross because I can only tell him my symptoms not exactly what it is :frowning:

Don’t want it to be MS but do want to know what it is, soz they haven’t found out whats going on with you…