What's wrong with me?

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


Hi Wilbeth and welcome,

You are not a fraud for coming on the site, MS has so many variables and different symptoms that Dr Google quite oftten diagnosis MS for lots of things! So sorry to hear you have been suffering for such a long time, it can’t be easy especially with children to look after. I have two young children and can empathise completley how hard it is to stay positive when you feel unwell.

When are you getting the the spine MRI results? Have you an appt to see the neuro? If not i would ring the secretary and ask. You know your body better than anyone else and if you know something is wrong then push the doctors to find out exactly what is going on, even if it turns out not to be neurological, where are they going to refer you next? Don’t give up, you should not have to suffer, you deserve answers, you may have a long wait to find out for sure, but nothing stays hidden forever.


Laura :slight_smile: