I’ve not been on here for a while as I have been plodding along as best I can, burying my head in the sand, trying to stay positive by ignoring my health issues. I am thankfully back at work following a long five month absence but things still are not quite right.
My ‘journey’ began back in June 2011 when I suddenly and for no apparent reason developed double vision and numbness across the right side of my face, neck and down my right arm into my hand (the double vision remains to this day – corrected with prism glasses).
To cut a long story short, I’ve had a whole host of ‘neurological’ type symptoms ever since and there have been a few ‘secondary’ type diagnoses along the way (confirmed Diplopia, Reflux, O.B.S., Sciatica and Raynaud’s Phenomenon). Yep, I’ve also had all the usual culprits including essential tremor, muscle twitching, heat intolerance, shooting electric shock type pain, fatigue, heavy limbs, stinging and light sensitive eyes, mobility issues and other weird and wonderful sensations including bubbling, popping, burning and crawling / creeping under my skin.
As I suspect many others on here may have experienced, when I first started seeing my GP there was a lot of discussion about anxiety. I accepted that this was an issue at the time albeit secondary to my initial symptoms, which were by that time causing problems at work. This topic is no longer discussed – I have made it clear that I am happy to attend for ‘psychological’ help or C.B.T. but am told that this is not necessary in my case.
Prior to all of this, I had experienced a number of health issues over the years which seemed insignificant at the time. First up was a severe illness when I was in my 20’s which led to hospitalization for over a week. A biopsy was taken and the illness was later put down to Epstein Barr although Hodgkin's was suspected initially. I have also been taken into hospital on a number of occasions over the years with severe chest pain / tightness (heart attack ruled out every time but no other conclusion made as far as I was made aware).
Anyway, my dilemma is this. Now 39, I have no ‘overall’ diagnosis as such yet have been taking a vast array of medicines long-term upon direction to help alleviate my symptoms (Movicol, Omeprazole, Codeine, Mirtazapine, Amitriptyline, Pregabalin, Propranolol and other OTC painkillers....).
Things just don’t seem to add up. Why am I on all this stuff if the experts can find nothing wrong with me? Conversely, why, if there is nothing ‘physically’ wrong with me am I not being offered ‘psychological’ treatment? I feel totally in the dark with so many unanswered questions. Ever feel like you are a nuisance to the medical profession or a hypochondriac?
When I last saw my GP and upon being pressed, it was admitted that MS cannot be ruled out. I was told that I must be patient 'as physical signs may not show up in tests until 10-20 years down the line'. It transpires that I have not been discharged by the Neurologist who I have seen twice (I’ve had an MRI, EEG, EMG, NCV).There was a slight issue with the NCV apparently (impaired sensory conduction) but 'nothing to worry about'.
Does anyone know what the doctor’s might be waiting for before taking things to the next level? What lies ahead I wonder?
Is there anyone else out there in my predicament? How are you coping with the uncertainty?
No one seems to understand that a diagnosis, whatever it be, will enable me to move forward by providing that missing link I need to seek 'self-help' specific to whatever 'condition' it is that I have....