Hello! Been hanging around for a bit but never took the courage to introduce myself.
Nice to meet you all, my name is Maria and have been diagnosed with RRMS since July 2021.
I actually new something was wrong with me way long before, but alas I got the usual GPs that would ignore my pleas to test me properly and dismissed me and my worries.
One evening I just started having tinnitus in my left ear and vertigo.
In the morning my entire left side was paralyzed, eyes would not stop moving, could not swallow properly and right eye would not open.
Mind a week before had facial issues that worried NHS111 thinking is was a stroke. But once I went to A&E and being told there was 12 hours wait and no one person saw me, I decided to self discharge and go home as if it was a stroke it would have been too late anyway.
But then the relapse came and I had to go back to that same A&E through ambulance. I remember the doctor calling my name after waiting hours and wanted me to walk in the room… I could not walk. I was paralyzed. I told him that… He did look at me as I was lying.
I think the problem with me is that I am 36 but look 20. They look at me as if I am young and healthy. But believe me when I say I am not.
They admitted me for 8 days because each scan was always with no contrast and had to wait over an over again to redo the same scan after I told the radiographers the doctor wanted it with contrast. They ignored me saying that the doctor did not request the scan with contrast and carried on. Mind I am a radiographer… You can call the doctor there and then to change the request and in the meanwhile carry on with the proper scan after confirming with the doctor what they actually want. Nevertheless, I had to redo another scan later on, but this time with contrast, finally. And after that a spinal puncture to see inflammation.
They said… I may have MS. Emphasis on may. I said I wanted to go home. Had enough of them all. The consultant would not see me within allotted time, I was tired, could not sleep because of too many people around. I just went home.
They promised me an appointment with the consultant within two weeks. 3 months passed.
I went to the appointment and it was only to confirm I had MS… Waste of time in my opinion. They said we needed to start DMD immediately. They will book another appointment ASAP while I decide which meds I want. Nah, 4 months pass by.
I go to the appointment, again. My consultant is 2 hours late to see me. I am the last one on her list. I go in and tell her which meds I want. Mind that previously I called my MS nurse to ask for help to decide the meds. I wanted kesimpta. Not allowed, why? My RRMS is not at that point yet. So what are my options? Avonex.
They want my MS to get worse before I can get a better option. Thanks…
Going back to the 2 hours late appointment I ask some questions to the consultant. All dismissed. I was not listened to because she was already late and had no time for me. I say the drug I want. But she had another opinion. Had enough, I want that drug end of. She said unwillingly ok and put the order through. How long will it be? 4 weeks - Maybe. I am still here with no treatment and symptoms which are out of control and are constantly dismissed. 4 weeks have gone by already and nothing.
So this is my story of how I was diagnosed with MS. A bit of a rant I know but this is my reality unfortunately and have no money to go private. I want to let people know that you are not alone going through stressful and horrible time because of horrible management from your doctors. I asked my GP to see another neurologist possibly from Barts as I really do not like my current neurologist. Will get to see them in May.
And here I am hoping to meet many of you and hopefully see my situation a bit brighter in the oncoming future. Nice to meet you all!
but he was right wishing you the very best on your ms journey
tried Tecfidera but ended up having a big relapse a couple of months later so I am on Gilenya now but they think I have progressed will only know at my next appointment in August.