I'm new to the forum though I have been reading snippets of posts over the last 6 months. I'm just looking for some advice and to share the emotional struggle that I'm sure many of you have been through in finding a diagnosis.
My story starts October last year - it had been a difficult few months as my partners mother and brother passed away within the space of a few weeks and I was trying to support him as best as possible whilst he was in Denmark. I guess I was really worn out travelling back and forth, worrying about him and still in shock myself over the deaths.
My first obvious symptoms started with pins and needles on the left half of my lip which at first I thought may be related to physio treatment I'd had for my neck 2 days prior. Anyway the pins and needles gradually worsened down my fingers, my foot began to feel numb on my left and get pins and needles too and I was getting stabbing pain in my L eye and armpit. My GP quite rightly referred me to a neurologist and I was seen to in a month.
At this point I'd noticed my symptoms were much worse when I came out of the bath, I felt tired and my L butt cheek had also gone numb. I saw the neuro who arranged for blood tests (vit B/D, ANA, thyroid, liver, kidney, FBC etc), EMG and spinal & Brain MRI with contrast.
I was reviewd again end of december by which point I felt a bit off balance though looking at me nobody would see anything, my L leg felt tired and stiff when I was walking and I couldn't run, I was experiencing intermittent bouts of pain in it also as well as bowel problems. None of my tests showed anything bar slightly reduced vitamin D and a few white spots on the MRI brain. The neuro said the white spots could be normal but theres a few more than he's happy with. He then turned to my partner and said how anxious is she? My partner knowing me said she's probably 3/5 she's logicaly worried but not over anxious. The neuro knowing I was a health professional said I know you've been very anxious and worrying and writing all these symptoms down etc etc maybe that isn't helping and you need to not focus on the symptoms (implying it's anxiety). He then said I can't say this is or isn't MS though I don't think it's likely but if you're very worried I can send you for LP and EVP it's up to you.
I walked out of the neuro office five minutes later feeling upset and nowhere closer. He'd left me with some time to think whether I wanted the tests. Over the next 2 months I decided to give the 'anxiety' theory the benfit of the doubt and didn't talk about symptoms, write them down and I asked everyone who knew not to ask me. I tried to carry on as normally as i could. By mid-feb I got to a point where I had to admit though the pins and needles had gone I still had bowel issues, swallowing issues, still sensitive to hot water, vibrations and pain which is terrible some days and almost normal on others.
I now have a review in 1 week with the neuro and I'm dreading it. I don't want him to just brush aside my symptoms - I don't look terrible but there are some days that i do feel really bad. I could go for an LP but he's already said even if it was MS he wouldn't put me on any treatment so i feel like what's the point. I could still have MS even if my LP was normal anyway. Looking back even before the first obvious symtpoms started I'd noticed some strange problems with my l leg and had had neck spasm which I'd not really thought too much about. I'm so confused: something in my head keeps telling me all my symptoms sound like MS. But then this neuro who is an MS specialist says he doesn't think I have MS - then whats causing all of this, I'm certainly not hallucinating.
Any advice is helpful. Sorry about the essay - thanking you in advance