I’m new to the site. I’m just wondering how everyone’s symptoms manifested before diagnosis and if anyone had a “normal MRI” before diagnosis?
I’m a 37 year old mum of two, 2018 was my fittest, strongest and healthiest year after having my children, I felt great. January 2019 came along, I had a cold sore with tingling to the left hand side of my face, left arm and left leg. Periodic numbness in these areas and significant weakness. I went to the GP to be sure I didn’t have shingles because my boss is pregnant. The GP was concerned with the grip of my left hand being very weak, he got several different opinions from other Drs at the surgery and called a neurologist while I was there… I was baffled and said “so is it shingles?” nothing else had entered my head at all. I was given medication for the cold sore and a referral to the Neuro clinic at the local hospital. My symptoms eased a little, still not “normal” but enough for me to think I was wasting the consultant’s time, he carried out his examination… I had altered sensation on my left side, brisk reflexes and was referred for a MRI.
I had another bout of symptoms (going back to square 1) with a sore throat and period of feeling unwell. I then attended a MRI for brain and cervical spine with and without contrast, both came out “normal” and I was given the diagnosis of most likely Postherpetic Paraesthesia. I was relieved to have a normal scan result but then with no real diagnosis, plan or treatment I felt like a fraud! I went back to the GP and had a full set of blood tests and everything came back fine, so great… I try to get back to full strength. I was exercising again, changing gear in the car was ok, carrying the kids school bags ok most days and I could get through a body pump class (ish) using the lowest weight… brilliant I think things are looking up.
Last weekend I went to an exercise class and the following night, out for the evening to celebrate a friends 40th (unusual for me these days), no dancing, a little drinking. The next day utter fatigue, thought maybe because of the late night but I was home by 12pm and sober. The day after all my symptoms are back with a few added extras, left side of my mouth drooping when talking, make-up brush felt like needles, water felt like shards of glass when washing my face, electric shocks in my face… I felt utterly deflated. The day after that my arm and leg are weak again, feeling like jelly and I’m walking strange like the floor is soft, I go back to the GP and cry in his office!!! I felt ridiculous all the test results coming back are telling me I’m ok, there is nothing wrong!! But I can’t function like I used to.
He has referred me back to the hospital, I’m so scared at the moment! What if everything is ok and this is just me now, what if there is no label, I feel lazy and useless! I now have a burning sensation on my left forearm and I feel like insects are all over the left hand side of my face. I’m agitated with the children over the smallest of things and I can’t concentrate on my studying (I have an exam in 3 weeks), I feel like I’m in a fog and I’m screaming from the inside to get out but no-one can hear me!
Thank you if you have got this far and I’m sorry for the novel, I don’t like to burden my friends and family and without a name for my problems I think it’s hard for them to understand or believe!
I was wondering how many people have had a “normal” brain scan and go on to a MS diagnosis in later years?