Long journey

Just feel I need to put down in writing my long long journey and possible diagnosis next week.

It all started 11 years ago, I was having seizures at the time and I was 23 years old. I saw a neurologist and had an MRI etc which at the time was told it was clear. I started medication which never helped but thankfully within 2 years my seizures stopped.

Until 2022 I had several things happen to me first was urology issues, I have now been in retention over 40 times with no cause or explanation. I had sepsis twice after bowel adhersions and was in ITU and nearly lost my life. This caused a heart issues so have damage of my heart now.

2021 they had a look at my bladder and once woken from the operation I stopped breathing and was in ITU for a few days.

2022 I ended up in hospital with full left sided weakness and was told possibly a stroke. MRI scan revealed 6 lesions on my brain. Neurology said they believed I had a one off neurological episode.

Only when I complained that I felt nothing was being done to help me has Iv had varies unexplained things over a decade. The neurologist stated they didn’t ‘know’ I had a scan 10 years prior so reviewed the scan only to reveal that the previous ‘clear’ scan was not actually clear and was reported wrong. They found 2 lesions on the previous scan.

Even after all of this they still said they were not sure I had MS as years previous I did not have a positive LP.
Anyway I had another LP December just gone and Iv seen the results already and it is positive for MS and I have an appointment in Addenbrookes next week.

Though part of me believes I still won’t get my diagnosis I think I have just lost trust in the NHS now. Throughout all of this I have been treated poorly for years labelled as someone who is ‘dramatic’ or making things up.

I struggle everyday with my cognitive function and mobility but I just get on believing I will never get any help.
I keep thinking if that scan was reported right over 10 years ago my life would be so different and I would likely been on treatment years ago. Just trying not to dwell on that but it’s hard.

Anyway thanks for reading

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I am sorry that you are having such a tough time and for so long. I hope you get some clarity soon. You are right about the ‘what if?’ questions. I have one of two of my own, and it does not do me good to dwell upon them.

So I got my diagnosis of MS yesterday and was a little shocked at how it went. Just said they would scan me in a year’s time and that’s it. My partner is a little upset as no information was given about the condition or medication discussed. The appointment was less then 5 minutes to give that diagnosis