Hi everyone,
I could really do with some advise on what to do next if anyone has the time and energy to help at all.
It will probably help if I give you a brief background and then go from there.
I was diagnosed with cfs/m.e over 7 years ago after suffering with debiliating fatigue, adverse reaction to exercise, joint and muscle pain and flu like symptoms. Since then I have had a range of other symptoms and cannot get back on track no matter how hard i try. Over 14 months ago, I started with severe headaches which effected my right eye. It became slightly droopy and would flicker and close if I turned my head in any direction or pressed my face or head. I also had dizzy episodes. They initially thought I might of had a tumour , but an mri and a ct came back negative. I was then told I probably had hemifacial spasms. These symptoms lasted for around two months and then went so i was discharged by the neurologist. Since then, I have started with twitching all over my body which can be seen or be internal. They have been tremor like and also my thumb will flicker on its own and i get burning, dragging pains in my legs. They often feel like a mobile phone in my body. I also still have fatigue, severe pain in my left ear/jaw that will just appear and then go minutes later and I have had a week of tremors after trying to exercise. I also have joint pain in certain areas. I did however have a iron infusion two weeks ago and my twitching and buzzing has lessened since then.
.I did wonder if I could have had Lyme as symptoms are also very similar but doc has dismissed this and refused to test me. I have now been back to see the neurologist who has sent me for an EEG and nerve conduction studies, which were normal and I am having an ambulatory EEG shortly. ( apologies for long explanation)
My question is, should I ask the neuro if I could have an mri on my spine as my head was only ever checked or if he does not mention anything, just leave it and get on with the symptoms as it could not be MS. He said that it could be benign fasciculation syndrome.
I am currently in uni and work a few hours a week as if I do too much, I relapse and end up on the couch for days.
I am starting to wonder if I am focussing on it all to much and just need to suck it up and get on with things.
Any advise would be gratefully received,
Thanks,