Appointment tomorrow and help needed please
Hi everyone 👋.. Im so sorry for the long post but really in need of some advice. I'm not diagnosed with ms but have a diagnosis of fibromyalgia but I'm being kept in the ms clinic. In September I had a planned stay in hospital which didn't go great. The Dr who admitted me had said I would most likely have another mri and lumbar puncture done but 3 days went on and nothing was happening I was only getting bloods done and then they finally came round and apologised to me and said they had forgot about me, after that all that was done was I had junior doctors practicing their physical exams on me and after a week I was told I had fibromyalgia, chronic migraine and significant weakness. I had a spinal tap done in May 2022 showing matching oligoclonal bands, and mri with periventricular and subcortical lesions. The last 3 years iv had an array of symptoms affecting my day to day life and all this happened after I got my 2nd covid vaccine, before this I was fit and healthy working in a hospital as a carer on a palitive and rehab ward and I loved it. But in the last 3 years iv had pain all over but the majority of my symptoms affect my left side the worst. Iv had tingling in my lips,numbness from my face down to my toes, which afterwards left me with a weak left side this has happened 3 times in total round the same time of year and the most recent was 4 weeks ago now. I have horrible fatigue nearly everyday and wake up feeling like I have a hangover everyday but I don't drink. Left sided burning, pins and needles, sharp stabbing pains that take me by suprise and really hurt and I never know when they will appear, squeezing pain around my ribs, fasiculations that I can visibly see, I'm always in pain everyday and a tremor in my left hand and poor short term memory. Also when I have to use the stairs my left leg shakes. I have my appointment tomorrow in the ms clinic but what I need to know is should I suggest another lumbar puncture and mri if she dosent?? Thank you so much if you got this far reading this, I would be very grateful for any advice please..❤️💙
Make sure your Neuro is an MS specialist. if you are still not happy you are entitled to seek a second opinion.
I would say you need definite diagnosis. MS is diagnosed using the McDonald criteria. This involves showing lesions on the brain in space and time. Plus ruling out anything else. There are good YouTube videos about it. If it is MS then getting on a Disease modifying therapy (DMT) is super important for long term outcomes. Going through diagnosis is challenging. All the best.