Hi,
I could do with some guidance, please.
2008 - had a number of symptoms, including: awful fatigue, muscle pain, visual disturbance, and occasional nerve pain. The GP said it was CFS, and so I was put under a CFS clinic, at my local hospital. These symptoms came and went, new problems were introduced, and along with medication (amitriptyline, Gabapenten) I plodded through the next five years, gradually feeling worse, with new and old symptoms visiting every 10 to 14 months. I was unable to work consistently.
At the end of 2014, I felt bloody awful, worse than normal, so I was referred back to a neurologist, who did a blood test, and confirmed that I had a b12 deficiency/Pernicious Anaemia, and discharged me from the clinic. I had many b12 injections (and still do) and thought this would be the end of the bad times as far as my fluctuating health was concerned.
2015, I felt good, with the occasional heat intolerance, leg cramping, and fatigue, but I felt good. Under the guidance of my GP, I reduced and came off the medication. The summer of 2015, I had a scan of my brain and neck for something unrelated. Whilst looking at the scan image, I noticed and enquired about, the white blemish that sat on the spinal cord near the base of the skull. The consultant I was with, said, “speak to you GP”, and he carried on, getting back on track.
The start of this year, 2016, I felt my world closing in on me. The beginning of January, my left leg became numb. I went to the GP, who did a blood test, and told me to take it easy. Blood test was fine. Like I have had before, I felt my balance going off kilter. I was walking like a drunk, falling onto things, misjudging corners and distance. Then fatigue. Then the most horrific nerve pain I have ever had, that touched just about every part of me. The heat intolerance became worse, my skin was crawling. The leg muscles, especially the lower limbs, would randomly tighten and cause pain. My eyes couldn’t focus properly, and my balance was terrible. All of the aforementioned had visited me at some point in the past, but never as vicious as this time round. And if that wasn’t enough, I had new problems to deal with: numb fingers which caused a lot of fumbling, extra difficulty having a pee, and this weird vibrating motion that run down the centre of my back, and sometimes the right side of my back. Oh, and I almost forgot this heavy pressure that occasional sat on the left side of my sternum.
i tried to work on three consecutive days, but only managed an hour or two on each. I went to work on the fourth day, and was told that I looked like death, and to take some time off. I went straight to the GP, who echoed my work colleagues comment, after which she referred me back to the neurologist I had seen previously, marking me as a priority case. As my luck would have it, the request form was lost in the system several times, and as such, I am yet to have the appointment, though I do have a date for the end of June. After three weeks off work, and feeling 85% better, I returned to work on a half-shift basis.
And so here I am, six or seven weeks out of an eight week flare-up. I am once again loaded with amytriptiline and pregabelin, which seem to have calmed the nerve pain significantly. That said, I’m still lingering at 85% on the health meter and can’t seem to shake the balance issues, the intermittent peeing, pins/needle/numb fingers, and muscle pains. All random, and nasty.
Im feeling exhausted with it. At its peak, it just felt like my body wanted to shut down. I sat in the car, outside a&e, several times, but never went in for fear of wasting valuable NHS resources.
if you’ve read this far, thank you.
The reason for all of the above? Well, I’m convinced that what I have is ms. Its been roughly 8 years since I first went to my doctor with various symptoms, then told it was CFS. The symptoms came and went, and I never knew what to expect each time I had a flare-up. Each time slightly different in symptoms, and each time I felt slightly more pain, more fatigued, more unwell. There seems to be a cooling off period between flare-up’s which lasts between 10 to 14 months, before its back again, slightly worse than before, slightly different, As mentioned, I am back to the neurologist in June, and can’t even entertain the idea that he will send me home without some sort of progress. Should I just ask him straight? Do I have ms? The meds I am taking seem to control the nerve pain, but my body is in need of some extra help - and need it soon.
when I think way back (which is easier then trying to remember 30 minutes ago) I’ve been suffering with little telltale signs since my mid-20’s (I’m 49 now). The Fatigue, the trouble with vision, the pain, and more fatigue, it was all there, way back when.
Ultimately, this short story has been about one thing - should I ask the neurologist straight? Do I have ms?
Thanks for reading,
Tim