No Longer Looking For Diagnosis

Hi Everyone

I first asked a GP about my symptoms back in the late 80s and he told me he suspected a central nervous system disorder after doing the usual neurological tests GPs can do. He referred me to a neurologist.

The neurology appointment and consultation arrived early 1991 and he repeated the same tests the GP had done then said he was all for sending me for further investigations. He then asked me to wait in his side room while he took a look at my medical notes in case he missed something.

After 10 minutes or so he told me that after reading my notes he had decided that since all my symptoms were most likely due to mental health issues (anxiety because I was mum to 2 children with special needs),he felt further investigations weren’t needed. I would no doubt get the same response now as I am currently caring for my husband who is terminally ill.

In the 30+years since, all of those symptoms have got a lot more noticeable and others have been added.My current GP knows about the new symptoms but I’m still know nearer getting a diagnosis than I was 30 years ago.

I have had friends accuse me of malingering as I have no diagnosis (dumped friends now) and when I was in a coma following a cardiac arrest four years ago, hospital staff told my husband and my son on different occasions that they thought I was a hypochondriac. I can only assume that this is on my medical records as I hadn’t talked to any staff at that point.

I am currently working from home as a writer and also run a bunch of on-line stores so it’s not like I am just a lazy so and so.

I’m really posting to say that acceptance without fighting for a diagnosis has simplified my life so much and I am a much calmer and happier person for doing this.

hi nancy

what a shocking experience you have had.

it appears that you have to fight for the treatment you need.

i was very lucky because 10 years ago i had the most wonderful neuro who is based at the main neurological hospital in Greater Manchester and does outreach clinics.

so glad that you dumped those friends. i dropped a lot because they left me stressed.

avoid stress, make sure you have something to look forward to, treat yourself to whatever floats your boat (Wine, Gin, Chocolate etc)

Carole x

Hi Nancy, I think the way you were treated back then was utterly appalling!

I cant imagine for one minute that you feigned a heart attack and was in a coma!

If you`re still having symptoms but feel in a happier place, then good for you sweetheart.

I searched for a diagnosis for many years, was misdiagnosed and then finally did get that proper diagnosis of Spinal PPMS in March…22 years from onset!

Take care of yourself and your hubby.

Boudsx

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