Hello, my name is Vicky and I am very newly diagnosed

Hi everyone! My name is Vicky and I am 52 years old. I have had a long 3 year journey which has brought me to this point in my life. I was diagnosed on Friday 12th January and am experiencing a rollercoaster of emotions at the minute.
My physical problems began almost 3 years ago after my first episode of Covid 19. I wasn’t hospitalised, and recovered what I thought was fully. However, little did I know the journey I was just beginning. Firstly, I began struggling with fatigue like nothing I had ever known before. I gave up cycling to work as I was having trouble lifting my right leg over the cross bar to get on my bike. I began taking the bus to work which meant I had a 5/10 minute walk to work. I began falling randomly but thought it was just me being clumsy. My legs seemed to be always weak and shaky, some days worse than others. In the summer of 2022 I had a really bad episode of Gastroenteritis like nothing I’d ever known. As I recovered from that I had 3 weeks where I felt like I had a tight band around my rib cage. It was awful but went as quickly as it came. The doctors thought it was related to the Gastroenteritis. Next I started with lower back aches which wouldn’t go no matter what I did. The doctors had nothing to say.
Whilst on holiday in August 2022 I woke up one morning with pins and needles and change of sensation in my left arm. I was diagnosed with a trapped nerve and referred for physio. This didn’t make any difference.
In November 2022 I saw a new doctor at my GP practice who suggested I be referred to the Long Covid clinic. This was done and last March I was diagnosed with Long Covid. My problems carried on but I thought I had Long Covid. By October last year I was so sick of all my symptoms I saw a GP with a list. He referred me for an MRI of my neck to identify which nerve was trapped. There wasn’t any trapped nerve, but the MRI showed a problem with the signals down my spinal cord. This led to a referral for Brain and full spine MRI with contrast which I had on 14th December. The results showed lesions on my brain and spinal cord, which tied in with my symptoms. I am now awaiting for a Lumbar Puncture, and referral to MS Nurses at my hospital, to commence fortnightly injections soon. I will have to have yearly MRI’s unless I begin with new symptoms.

Welcome Vicky,

Sounds like you have had a long journey. Had had my fill of MRIs since being diagnosed in September. Hope your lumbar puncture goes well was quite lucky in a way that after my mri’s was enough to diagnose me (Primary Progressive) though being shown the images scared the hell out of me.

Thank you Pete. My Neurologist said I’ve got MS from my symptoms and MRI but wanted to put me through the extra torture to cross the ‘t’ so to speak. I was lucky enough not to see my images as I had been told I would be shown them. Ignorance is bliss sometimes. My biggest fear is losing my independence as I have always lived alone and wouldn’t have it any other way.

I feel you there for the longest time I have always been the work horse donkey doing all the heavy lifting, fixing what needed to be fixed etc. But my walking and balance getting steadily worse has become something I can no longer be.

Hi Vicky. I was diagnosed when about your age and will be 70 in a few months time. I remember the shock and nightmare of being told my diagnosis and of thinking about what might happen to me. I’m pleased to say that 17 years later and although I am married, I think I would be able to carry on living independently. The MS has affected my right leg and I can’t walk for more than 15-20 mins. Also, I do get tired- fatigued these days. Sometimes my right arm feels a bit disconnected and uncontrollable as well but that hasn’t caused any problems (- so far). I’m guessing that your injections might be Pledigry? I have a weekly injection of Avonex - similar to Pledigry I think. The injection leaves me a bit jaded and washed out for the following day ( sometimes 2 days ) but it’s not too bad.

After all these years I can still get a bit down about the MS and what the future holds but in some strange way it’s become my new ‘norm’. I very much hope that you have many more years without limitations caused by MS - and that before too long re-myelination treatments become available. From my experience my only advice is that once you have overcome the shock then think about what you would like to do over the next years- what’s important in your life, what best enriches your life and do them

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Thank you for your positive message! My emotions swing from being ok to not ok at all. I have left arm numbness and tingling and right leg weakness. The more tired I get the worse my leg gets. I’m waiting for the MS nurses to contact me to start treatment- all I know is it’s a fortnightly injection that will make me feel like I’ve got a cold for a day.
I am still working although not full time, and intend on keeping my independence as long as possible