Completely in limbo after Neurology appointment

Hi all,

I’m new here. I’m completely in limbo at the minute and don’t know where to turn.

Starting from the beginning, 4th November 2018 I was at a garden centre with my Husband and our 2 daughters (I’d been feeling a bit off for a couple of days but had an infection in a piercing so had put it down to that) all of a sudden I went very hot and felt like I was going to collapse. I linked my Husband’s arm and we managed to get back to the car but my legs didn’t seem to want to work properly and I felt completely and utterly worn out. The next day I ended up at A&E as my legs still weren’t working properly (I was struggling to walk and felt like every time I stood up, I was going to lose my balance) After being examined they also put it down to the infected piercing (which I had taken out by then) and prescribed me antibiotics. After a few days the infection had cleared up but the leg/balance problem hadn’t. I went to see my GP, he diagnosed Labrynthitis (without even looking in my ears) and prescribed me some tablets (I can’t remember what these were) a week later, still no change so went back to see a different doctor, she diagnosed Vertigo, prescribed me Betahistine and sent me for a blood test. 10th December 2018, she phoned with with the news that I had Type 2 Diabetes (and also high blood pressure when I went in for an appointment) I was prescribed Metformin and Ramipril and a week later I returned to work and was feeling better (I’d had 6 weeks off) so I just put it down to the Diabetes. After all of this I felt completely fatigued constantly, falling asleep as soon as I got in from work (I only work 5 hours a day as a TA) I phoned the doctor who put it down to the medication I was on and the fact that my body was adjusting. 24th May this year, 11am, I was at work when all of a sudden I felt exactly the same as I had in November, legs went weak and just felt generally ‘ill’ I tested my blood which was slightly low so put it down to that, I had an apple and sat down for an hour but didn’t start feeling any better. I ended up going home just after 12, phoned my doctor but couldn’t get in that day (Friday) and it was bank holiday the following Monday so I phoned 111, I was put through to a paramedic who advised me to got to A&E within the hour. I seen a doctor there, who suspected MS and admitted me to the Medical Decisions Unit. They did all sorts of tests (blood, reflexes, vision etc) and eventually narrowed it down to either PoTS or MS. They ruled out PoTS there and then by doing my blood pressure and pulse while standing and sitting. The consultant I saw was pretty sure that I have MS and referred me for an MRI. Fast forward to Wednesday just gone (10th July) I had my MRI followed by my first Neurology appointment the next day. I still have the walking/balance problems which have now been going on for 8 weeks. The Neurology appointment seemed very rushed, he checked my reflexes etc (literally 5 minutes at the most for all his checks) then said he’d had a look at my MRI, he couldn’t see anything obvious on there ‘but he’s not an expert on MRIs’ and that I need to wait for the Radiologist’s report as he will scrutinise it and may find something that isn’t obvious. He’s going to refer me to a Neuro physio and said he will be in touch with either good news or updated news on my MRI.

Stupidly, I’d gone to that appointment hoping for answers but got nothing and now feel more in limbo than ever just waiting for that phone call. I’m stuck at home day in day out and can’t do much or get around as easily as I used to (although my legs feel better than they did when it first happened but my brain feels like it’s been taken out, shook vigorously and put back in) I’m worried that if the MRI results do come back clear then what’s going on with me? Why am I feeling like this?

Thanks for reading, sorry it’s long,


Hang in there Gemma I have my first neurologist app in two weeks can’t bend my knee when walking and can’t move my arms and have pins and needles everywhere feel like I have been stuck in limbo for the last 5 months. Michelle