I’ve known, for the last month or so, that it’s very likely that I have MS.
Known, because my neurologist already thought I had RIS. At first I thought the whole idea was a bit bonkers. But now I have a symptom to go with it - the “insects crawling under skin” symptom, feels like maggots tunneling into a dead body, confined to my left hip, mainly nocturnal and, weirdly, goes if I lie on my back. Only, I sleep on my side. Slept. Haven’t slept properly for so long.
In the meantime, I have been waiting for nearly 2 months for the result of a lumbar puncture.
How do/did any of you cope with the uncertainty - of diagnosis, of MS itself?
My life was not in a great place anyway. I had been through so much and was just trying to pick myself up from the latest disaster. At this stage I really feel, if I have MS, I’m not sure I want to keep living. Sorry to be blunt.
I appreciate this will be different for others: the problem is not MS per se, but MS on top of everything else.
The thing I most fear is losing my mind, my mental capacity, brain atrophy. That, and the uncertainty about what the future holds.
For weeks now I have spent every spare moment reading about MS. Feel like I am trapped in an MS cage.
Don’t mistake how you feel now for what you will feel if/when diagnosis is in the past and you have taken time to get your head around it (not a quick process in my experience). The period leading up to and just after diagnosis are notoriously not fun, but we are resilient creatures and (you know you are) and we find a way to deal with whatever comes along. I wish you well as you work through this difficult time. It won’t always feel this bad.
Dear Leonora, oh love…I really understand how you feel…honestly I do!
It took 22 years to get my diagnosis!
Even though I presented clinically with typical PPMS. No tests results ever showed any signs to prove it.
Test after test, neuro after neuro for all those years.
I finally went to a specialist neuro hospital in Liverpool…where I was an in patient for a week. I had every test going which causes paraplegia and hey presto! Eureka!!! PPMS!
2 years later, I came to wondering where I fitted in, how to carry on…I felt lost once more.
So what did I do next?
I asked God for help…he came to me 2 weeks later and saved me, sorted my head out. I became a born again Christian. I knew why Jesus was in my life.
Yeh, my disability is still with me, but I know I am not alone anymore.
The Lord can help you too…if you ask Him.
Bless you sweetheart. Please dont give up. You are worth so much more.
Much love, Boudsxxx
I am going to be very blunt and say, STOP reading about it! If you must carry on read the positives, all the new treatments, which were just ‘perhaps in the future’, when I was diagnosed, that future is NOW! If you are diagnosed,so much more is possible now,! and MS is not so much of a postcode lottery, that it used to be!
Thanks to all those of you who have replied.
I’ve finally got my letter, after endless begging. Bad news. Oligoclonal band positive.
I’m appalled by how little support there is, for everyone going through this.