Have only posted a couple of times since being in hospital in July following acute neuro symptoms of total bladder retention and unable to use right leg/spasticity/weakness which came on insidiously slowly over about 2 weeks. Prior to this was on waiting list for neuro appt anyway due to weird loss of sensation/tingling/overactive sensations in right arm, wrist, sole of foot and underarm about 10 months ago, which lasted until about Feb.
Then had major surgery and had nerve pain around abdomen and hips and thighs which I put down to the op.
Since leaving hospital after brain/spine mri (2 lesions spinal cord, one enhancing one on enhancing) and 3 days IV steroids which sorted the leg out, and to a point the bladder, I am now waiting to hear from neuro about LP results.
Where I’m getting confused is this: none of my July symptoms have gone completely, and have had during this whole timeframe odd burning on shins and back of knees and ankles, plus ‘new’ ones developing/coming/going
Since July have also had ‘hot’ sensations in left leg and foot which I still have
Last few days, right arm and hand are both really tingly/burny (like the painful bit of pins and needles when it’s first wearing off?) plus have a tingly ‘electric’ feeling in lips and head coming and going. Also some spasticity in both legs but only mild.
And painful eyeballs coming and going!
Have had one uti recently and bladder still very on and off.
Am quite clumsy and misjudging distance a bit and lurching a bit.
IF I get a dx of MS, are the partial return of old symptoms likely to be ‘relapsing’ symptoms - ie and old lesion flaring up?? And if symptoms are in the same area of the body are they ‘new’??
As you can all tell I really have not much idea what I’m talking about!! My neuro said I would be seen again 3 months after hospital discharge in July and to write down everything I can recall which might be neuro.
I can recall 6-7 episodes of vertigo over last 25 years, burning ankles 8 years ago for 2 weeks, odd tingly patches in shin , back and face which would come and go over last 20 years and 2 episodes of what my GP said at the time was migraine without the headache - where my vision went patchy and dark for a few hours about 25 and 15 years ago.
Also itchy burny hives and painful swelling on fingers for about 5 months every year for 20 years.(investigated for lupus a few years ago - negative) since my son was born.
So I’m well and truly in limboland…and probably driving you all mad! So my apologies. I know the criteria looks for evidence in 2 parts of CNS and possiby evidence of activity/damage at different times, so assume that 2 spinal cord lesions and no brain lesions probably puts me in the watch and wait category
I have actually made peace with the idea of MS, due partly to reading some of the experiences of you lovely people here have shared which have shown me that it may not necessarily be immediately disabling.
What I want now is to KNOW!!! So I can get on with dealing with it and hopefully treatment if anything suitable.
Thank you so much for reading - it feels so much better to explain all this to people who ‘get it’ ! xx