Afternoon gang!

Hi everyone. How`s everyone doing? Hope you are as well as poss.

I got 2 appointments in the post for my follow ups, after the farcical one last week.

They are for April 13th…yes, its a Friday....someones having a laff at my expense! And one for October.

I suppose April is acceptable, after that numpty neuro asked me to give her 3 months to see what she can do about my multi-diagnoses!

I have a new name for the local neuro dept…the Joke Shop!!! Seems about right with their tossing me from MS to HSP to MS again.

For those who havent followed my pantomine of a journey, heres a short run-down.

1999 - PPMS suspected, .due to examination findings, but…all tests normal…3 MRIs/LP/EMG/VEP/bloods. using stick, walker and wheelie part time

2003 - 95% dx PPMS

2004 - using wheelie full time

2008 - MRI…3 blobs in neck region…BUT MISSED!

2010 - HSP

2011 - different neuro said PPMS - was told that the 2008 MRI looked like MS and the missed blobs were discussed

2012 - different neuro said HSP

I have seen 13 different neuros in as many years.

Innit chuffing marvelous, eh? You couldn`t make it up!!

luv Pollx

Hi Poll Hope you’re as well as can be expected. It would be so good to put this saga to bed wouldn’t it? It makes you lose faith in the medical profession which is dangerous as we need to feel that we can rely on them. How is hubby getting on with giving up smoking? Keep on keeping on and don’t give up! Take care, Teresa xx

Hi Poll,

It begs belief just looking at your long list of appointments/diagnosis/non diagnosis/more appointments etc,etc,etc. The medics really should get their acts togather. I mean, I am not delirious that I have got MS, but I am grateful that at least I know what I have got because then I know what I am up against - ‘forewarned is forearmed’ and all that. I just hope that you very soon get the correct information and then you can move on from that point.

Very good luck to you for 2012,


Hi Teresa, cheers for your reply.

Hubby`s doing really well…9 weeks now and no cravings.

He actually walked past a smoker in the street and he got a face full of her smoke and said it was disgusting…never thought that would happen!

Yes, it would be good to be able to put this never ending saga to bed.

i will see what occurs in April and then probably ask for the referral to Leeds and MS specialist.

luv Pollx

Hi Moira, thanks for your reply.

I know what you mean about having a definite dx. No, it is horrible having MS, but I`d rather it be MS than HSP, as that carries a 50% chance that my kids and grandkids could develop it. Bummer!

luv Pollx

Hi dido, ta ever so for your support and kind words.

I had to chuckle when you typed HPS (ta for correction too). I thought perhaps i got something else again!

luv Pollx

Hi Mel, thanks for your replies. Yes, it often gets mis dx`d as MS, as the mobilty, bladder and bowel are affected.

As far as I am aware, certain genes mutate and cause these problems.

As well as being passed down, a person can suddenly have a mutation happen. If I do have it, it is more likely that mine have decided to misbehave…big time! Not nice!

luv Pollxx