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worried

hi all

Im a runner and i started falling in alot my doctor when in went to her shrugged her shoulders and said what would you like me to do so she sent me to the falls specialist in the hospital

#bit of background

my sister has progressive MS and is in a nursing she was diagnosed when she was 21 and is now 43

they sent me for a mri scan and it came back with markers similarities to MS, i was then sent for am urgent Lumbar puncher and ended up in hospital for 7 more days as i had a reaction to the LP and my fluid wouldn’t return back to the brain so 13.000 iv fluids later and medication i was allowed home after having the most horrendous pain live ever had in my life

i saw a neurologist in the hospital who said not all the information has come through but one of the proteins was positive… however it doesn’t mean you have it ill wait till your own consultant calls for you

i then had a letter on the 2nd april saying i am on the waiting list so i phoned to update my mobile number and she had a look and says your down as URGENT and u have been on the waiting list for 2 weeks and so you’ve just got another 11 to go as the waiting list is at 13 weeks

so then on Friday i had another letter stating my appointment is on the 1st of may on one of the big hospitals in Cardiff

im worried and panicking and im really scared

jo

Hello Jo

I can understand why you’re scared and in a bit of a panic. Being told you have many more weeks to wait for an appointment, then getting one fairly quickly would put the wind up you. But that doesn’t mean you have a big problem ahead of you. It’s possible that the consultant just made an extra clinic available.

You should be aware as well that although your sister has progressive MS, it does not mean that you are more likely to have MS, let alone the progressive variety.

Second guessing what will occur at the appointment isn’t going to help and will give you two weeks of utter hell. Try to relax about it. Whatever happens, will happen, and you’ll deal with it. That’s what we do, just manage to deal with whatever hits us.

It sounds like you had a very nasty experience with the lumbar puncture. It sounds utterly dreadful. And very unexpected, to have a test that leads to such serious problems and pain. That will probably be the worst pain you suffer. I do hope so anyway.

Keep talking to us here, we do understand what you are living through and will try to help and support you.

Sue

Thank you for your reply and yes I totally agree with you I’m going to try and stay positive and see what she says on the 1st I’m returning back to work next Sunday so that will help as I’ve been of for 4 weeks because of the complications from the LP so fingers crossed and thanks again

Jo