Many thanks for reading first of all what is quite a long description - fair dues if you take the time, feel like I'm out of options if resorting to posting on internet, but anyway...
Back in 2007, after perhaps six months of putting up with a slight shakiness in my hands, and my growing tendency to be clumsy, I went to see a neurologist. She carried out an MRI and a series of electrical tests- all negative. Figured I was just someone with shakey (shaky) hands.
Fast forward four years. Around June 2011 I noticed an aching/seizing sensation in the muscles in my legs, generally only when walking downhill. Prior to this my hands had been getting wors. Saw my GP about this plus balance issues and again in August due to a noticeable deterioration.. On the same day after this visit (in which I was again referred to a neurologist) I found I could not stop my little toe (left foot) from twitching. This was followed by a sense of partial numbness in two toes (same foot) over the following days and general aching in my legs. I went to the A&E, and was given a basic response examination which apparently proved fine, though the doctor did identify the twitching as “fasciculations” but would not administer any more tests, explaining I needed to see a neurologist.
I have felt increasingly unsteady on my feet. At times I feel felt like I can’t stand up for very long and both legs have been quite painful at times in terms of aching.The twitching spread to both feet eventually, although this symptom at least has faded completely in the last month, but it did continue on and off for months on end, often only noticeable at night when lying in bed. I still find it difficult to balance on one leg.
I now feel weak constantly in my forearms - like it hurts slightly to keep them raised (e.g. talking on a phone for ten minutes can be a killer) and sometimes aches in both biceps when stationery. My finger tips feel a little numb when typing often, and my wrists sometimes quite immobile I have also had some aching in my joints. I occasionally get little twitches randomly. Lately I have just been in pain in all my limbs, on and off. Not strong enough to take painkillers usually, but just enough to remind me something is wrong.
Anyway my second visit to the neurologist yielded another MRI in September 2011, which came back clean and referral for Electromyography (EMG)- he carried out a surface version and then also a limited muscle one (needles were inserted) - all normal.
I am now due to go back to the original neurologist for review. All this would be fine and I guess I should take some consolation from the fact that I’ve been told two clean MRIs over 4 years likely rules out MS, and that a clean EMG indicates there is little likelihood of Motor Neurone Disease or Peripheral Neuropathy. However my major concern is that since October my eyesight has been off.
It started off as feeling as if I could not focus quickly enough and as if my peripheral vision was off. I put this down to lifestyle as I do a lot of computer work etc. I went to my optician twice for some basic tests (the second time when I freaked out due to a large increase in “floaters” in one eye) - eyes turned out to be fine physically. So I’ve been trying to reduce this over usage. However it all came to a head the week before Christmas. Prior to this a new symptom had been a feeling of “sea-sickness” when I followed something moving quickly with my eyes - it’s as if they need a second or two longer to adjust. I had noticed that my eyes were getting quiet sensitive to light and everything seemed a bit darker than usual. I went to visit a friend abroad the weekend after Christmas, and noticed in a panic that everything was a few levels too dark! To boot the aches and twitches in my arms and legs were in overdrive. Went to A&E where they examined me fully - my eyes again appeared physically fine. I did fail a few of the basic response tests (e.g. walking foot to opposite heel). I was told to return to my neurologist. On the plane home the light deterioration was frighteningly noticeable. At one stage I woke up and everything was so dim. I presumed cabin lights were dim. Then the voice over the intercom said “Lights dimming to land” and everything went down further again!
Went to my GP, who first sent me to my optician for the third time, rather than subjecting me to a long wait in casualty. Again eyes tested normally physically, but I was sent on to Eye Casualty for more precise tests. Again all normal. I asked them what I should do if everything continued to darken, and they agreed to book me in for a VEP (Visual Evoked Potential Test). I have this in about ten days. In the meantime everything is essentially far too dark most of the time and my eyes throb with pain now fairly regularly too; I have no problem in seeing reading/it’s just too dark compared to what is normal. But I’ve freaked myself out so much about it now; it’s hard to remember what was normal.
In terms of the normal blood tests etc. had these tested several times over past six months - all normal (though not tested for heavy metals). I also asked for acancthocytes to be tested for - normal. The neurologist also asked for the testing of a particular protein in the blood, which if present means muscle may be breaking down - normal. I take B-Vitamins, Omega supplements, etc. For the last week I’ve been taking supplements to boost eyesight (e.g. lutein, bilberries etc shot in the dark really).
In terms of lifestyle, I am a big drinker) and smoker, but have cut both out to see if this makes any difference. I am not on medication or a recreational drug user. I do have terrible trouble with sleep, have not slept proper 8 hours in what seems like years, my regular sleep would be 4-5 hours, or else crashing out at like 2/3 am when I switch off and sleeping for 10-12 hours but waking up feeling like crap. There is no history of neurological conditions, bar one person with Parkinson’s, but that was after 40 years of medication.
I do not know which worries me more - the upcoming VEP (which I may be putting too much faith in to diagnose anything not sure how precise it is anyway or is it just an indicator), or nobody finding anything and my still being stuck with all this and worsening. I am half crazed from worry, from thinking it is something very serious that is deteriorating (particularly eyesight!), to guessing at ME or some sort of immune condition or nutritional deficiency. Someone gave me some good advice as to what I can do in short-term, keep following these people up, stay off alcohol and cigarettes, and do something like swimming to relive stress so starting to do this.
Anyway I guess I want to ask what I should do next -is there anything else I should be doing or asking for, so I can be primed when I see neurologist? I have asked my GP for a referral to a consultant opthamologist also, waiting on this.
Also several people have pointed out how all this could be caused by hypochondria - I have been guilty of this in past and fully accept it is a possibility, but at same time it is difficult to see how it could be given the symptoms that are very physically real to me. If nothing else this let me get it off my chest a while!
Thanks for sticking with this and reading, any advice appreciated.