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Utterly amazed!

Having seen the Neuro at the beginning of August after a 5 month wait and being told she was 99 per cent certain it was MS but wanted me to see an MS specialist to dot the I’s and cross the t’s, I got an appointment through for the end of March. Nearly eight months after the Neuro’s one! I was so gutted that I had to wait so long.

Anyway, I have just had a 'phone call from the hospital to say that someone had cancelled and could I make it at 9 am tomorrow? Too right I will. I am so happy that I may finally get to the bottom of this. Hurrah!

Having said that it will probably be a massive anti-climax. Well, I just wanted to share.

Teresa xx

Hi Teresa,

I'm very glad you unexpectedly got an appointment so much earlier than scheduled.

However, I'm very cautious, too, about the impression your other neuro gave, that all that was needed was to "rubber stamp" the diagnosis.

Reading the many personal accounts here, it's clear an MS diagnosis is very rarely a matter of "rubber stamping".  The new neuro may want to commission his/her own further tests and investigations.

Even my own neuro, who was pretty sure I had MS from the very start, couldn't/wouldn't "rubber stamp" his own assessment, until we'd waited six months and had another set of scans, to prove it really was "ongoing", and not some kind of fluke.  The diagnostic criteria are intentionally strict, because it's a tough diagnosis to make, and the consequences of getting it wrong are potentially serious.

Tina

x

Hi Tina

Thanks for your comments. I think the new guy may well want send me for further tests. However I had a positive LP, positive EP.s and an inconclusive CT scan. The situation is ongoing as I have had this for more than 5 years and have got steadily worse. The first Neuro thinks it is PPMS. I didn’t have an MRI as I am really claustrophobic but if he thinks I should have one I will take a sedative.

I am aware that I should not get my hopes up too much regarding this appointment but my symptoms are progressing and I need to get some closure.

Teresa xx

Yes you’re right Claire- well remembered! Thanks.

Teresa xx

That's great news Teresa happy2

 

GOOD LUCK!!!!

 

Karen x

 

[quote=“rizzo”]

That’s great news Teresa

GOOD LUCK!!!

Karen x

[/quote] Thanks Karen I’m just hoping I won’t end up feeling like it’s been a massive let down by this time tomorrow! Teresa xx

Good luck Teresa, will you let us know how you get on x

 

[quote=“Chis”]

Good luck Teresa, will you let us know how you get on x

[/quote] Will do Teresa xx

THat's great that you got a cancellation, even if you don't get a full diagnosis at least something is happening and you are not just waiting, you can go on to the next stage. I got my diagnosis on the spot from arriving at hosp not thinking anything was wrong, so it does happen.

 

Take care and let us know how you get on x

[quote=“Lindilou”]

Hi T,

Just read your post good luck tomorrow. Like you it appears to be a waiting game. I have an appointment with eye doctor tomorrow quite nervous as I have now got inflammation in my eye. Crap !

Then neuro in January what a wait ! just cant wait to find out if I have MS or not.

good luck x

[/quote] Thanks Lindilou I have been today and been dx with MS and PPMS in particular. Just trying to get my head round it. Good Luck in January Teresa xx

Good Luck for tomorrow xxx

 

PPMS is primary progressive MS which there is currently no treatment for. If you look under the heading ‘what is MS?’ on this site, you will find it explains the different types.

Hth

Teresa xx

Hi Teresa

Welcome to our "special club", its always a big shock but at least it is a relief to know why you have such symptoms and that you not going mad.

I have had this a long time now, and although my life has been different to what I had mapped out, it still has been ok, so I just want you to know there is still life after this diagnosis, allbeit  different one.

Take care

Pamhappyflower

[quote=“emmae”]

Really sorry to hear your news but also glad you now have a dx after such a long time. Sending best wishes xxxx

[/quote] Thanks for your kind thoughts Emma. It wasn’t unexpected, so it will not be too tough to get my head round it. Just feeling sad. Teresa xx