Hi, I am new to this forum and I am getting frustrated with what is wrong with me. In some ways because I do not have a diagnosis I feel some what of a fraud even being on this site - though to date this is the closest disease I have found that fits the symptoms that I have been suffering from over the last 4 years.
I started with visual problems - mostly blurred vision though sometime I have strange twinkly lights to my peripheral vision. ( Not a migraine as I do get migraines with auras which is completely different.) I have bladder problems…twice I have gone into complete retention and have had to be hospitalised. In recent months I have begun to have bowel issues - whilst at work recently my bowel spontaneously emptied - which was mortifying. Most of the time it is OK, but I don’t know when these attacks will happen. I get odd sensations, including numbness, pins & needles and the feeling of water running down the front of my legs. Suffer too with restless leg syndrome. I have muscle stiffness in my legs and have begun to fall over more and more often. In the recent heat I have fallen three times - my legs just go from under me.( Today my doctor has told me that I will need to walk with a cane and will right an urgent letter back to my GP). I also get fairly frequently a tight constriction around my chest - very frightening when it first happened though I seem to be getting used to it now that I know I am not having a heart attack. (Have been twice rushed to hospital because work colleagues thought I was having a hear attack - apparantly I turn a very strange colour.) Along with all of that I continually feel exhausted.
I have been referred to a neurologist - have had two brain MRI’s which have shown one left frontal lesion that has not changed. I have had evoked potentials - which has come back normal. I have had a spinal MRI but have not received the results back yet. My neuro exam shows that I have hyperreflexia and babinski reflex in my left foot. So I don’t fit the criteria of having MS. So what now, I don’t know.
I am a single mum (43yrs) of two trying to work as much as I can and am fed up with feeling continually guilty about being unwell as often as I am without a firm diagnosis of any particular condition.
Has anyone else had a similar experience or can offer advice to what I should do next.
Thank you for reading. x
