Finally got my lumbar puncture results after chasing - they show there is a “high number” of oligoclonal bands, so combined with my “several lesions” on my MRI its looking pretty sure. I have another MRI on 5th July to check on my meningioma so that will show up if there are any new lesions. Next neuro appointment on the 12th july.
Meantime no new symptoms so its a bit surreal, and that worry its all going to suddenly go hideously wrong.
Just needed to share with people who understand, and ask, what happens next??
Hi, well as you suspect, a diagnosis isnt far off now.
I expect you`ll see the neuro to discuss the diagnosis. Dont forget to ask which type of ms it is and if dmds are appropriate.
If you dont already have an ms nurse, ask about that too.
Give yourself time to absorb all the info. it might be useful to take someone with you to all appointments as a 2nd pair of ears.
We`re all here for you.
Hi Ali, if you don’t mind me asking, when did you first experience symptoms and how long have you been waiting for a diagnosis? Sounds like you well on the way to getting some answers which i imagine is a relief. Wishing you all the best x
Hi, no I don’t mind you asking at all. Saw my GP early Jan as had gone numb down one side, couldn’t feel the pin he put in my leg at all. We know him quite well, which helps I think, as my daughter has some health problems. He had just been on a CPD event where a neurologist had told them about the importance of getting a quick diagnosis. So he referred me to the neurologist, long waiting list so I paid for a private first appointment (and then transferred back). Neuro said it was 50/50 and referred me for an MRI. That showed some lesions and a possible meningioma, so invited back for 2nd mri with contrast to see if it was a meningioma. It is one but thought to be benign, having another mri next month to check if its grown any. no new lesions or symptoms so referred for L/P which doesnt look great.
I know in many ways I’m lucky, low level symptoms at the mo and quick diagnosis. But our life was already complicated enough - our daughter has a rare condition and we were told she would die soom after birth. She is now 2 and a half but there have been some scary moments, meanwhile trying to protect her older brother (aged 6) from too much worrying.
aapologies if any typos, typing one handed x
I am sorry that you are suspended in limbo at the moment. It must feel like a long wait until July 12, but it will come round fast enough, and the neurologist willl have your latest scan by then as well, so will have more information than there is now.
The feeling of it all being a bit surreal is one that will ring bells with many of us. I do not think there is any easy way of dealing with it, TBH - just keeping going and doing what you need to do with family and work is the best I can suggest, and try to occupy yourself with nice things when you have any time to spare.
I think Poll’s suggestion that you take someone to the neurologist appt is a good one. Many of us like to have our significant other with us at those kind of appointments and that is something you might consider, if such a thing it can be arranged in your busy household.
Good luck with it all.