Hi. I'm a newbie, very confused and a little worried.
I have had various symptoms, on and off for at least 3 years that I can remember. In the early days, it was fatigue accompanied by pain in my left arm which varied in intensity. After a few months, the symptoms would subside.
My last 'relapse' started around October 2010. I began by feeling extreme fatigue. To begin with I brushed it off as being the time of year and kept going.
At Christmas, I got a nasty ear infection and was off work for a couple of weeks whilst I recuperated. The fatigue grew worse and was relentless. I told my GP who suggested routine blood tests - FBC, renal, liver, thyroid, CRP. All were normal.
By March/April, I was beginning to really struggle at work with the fatigue. It would just grip me around 2 in the afternoon and I was barely able to function. Yet I kept fighting on. I was referred by my GP for a scan on my face due to a lump (results found that I have enlarged lymph nodes, nothing more sinister than that). Around the same time, I started to get strong tingling sensations down my spine from my neck to around the middle of my thoracic spine and then about a five inch horizontal line across to the right. This symptom became relentless and distressing. My GP referred me for an MRI which other than mild stenosis (typical for a 38 yr old), it showed nothing abnormal.
I was then referred to a neurologist whom I saw in August. By this time, I was struggling to walk. After about 50 yards of relatively normal walking, I suffer severe pain in both legs - they feel as though I am dragging lumps of steel along the ground. I also have twitching in both legs and arms whenever I am at rest. When I saw the neurologist, I explained my symptoms - particularly focusing on the fatigue, difficulty in walking and the spine tingling. He examined me including my reflexes. He said he found all my reflexes to be normal and said that as I do not appear to have abnormal reflexes or l'hermittes sign - he felt that my condition was not MS (as suggested by my GP) and that it was most likely that I have M.E./CFS. I was then discharged from his care.
Since then, I have had to take long term sick leave from work - having been to occupational health at work who were very concerned at my ability to continue with my symptoms. My work colleagues were devastated watching me deteriorate each day. I have been back to my GP and requested a referral to an ME specialist in London as there is no provision whatsoever in my area. My GP has to request funding from the PCT for the referral. I am being signed off from work a month at a time until I am well enough to return.
Since seeing the neurologist, my walking ability has decreased further. I need to use a stick to walk out of doors. A few weeks ago, I used a wheelchair for a family day out as there was no way I could have managed otherwise. Over the past month or so, I have felt pins and needles constantly in my left shin/calf. In the last few days I have noticed a sensation like a tight elastic band or sock around my left shin/calf. This is worse when I'm standing but I can now feel it all the time.
In hindsight, I wonder should the neurologist have been so quick to dismiss me as having M.E. especially without a brain MRI? My GP thinks a brain MRI should have been arranged - unfortunately GP's are not allowed to request one. So my hope now is that I get referred to the CFS specialist in London and see what they say.
I feel rather scared and concerned. Of course I would prefer a diagnosis of CFS which could improve in time and hopefully even give me a complete recovery so that I can return to the job that I love! However, there is this constant nagging doubt that my symptoms may be more than that. :roll:
What are other people's experiences? Any ideas other than what I'm doing in regards to getting the right help?
Many thanks
Sarah x
