Confused by symptoms/timescales etc

Hi everyone,

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 :confused:

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

hi minnie

take you neuro’s advice and write down all your symptoms with an approximate date of when they started.

also say if they changed - got milder or worse.

paint a picture in words of what it has been like for you.

this will help your neuro to build a picture of your illness.

have you got an ms nurse?

research the DMDs for when you go to the appointment.

it appears to be the procedure to have the ms nurse present and discuss DMDs when giving the diagnosis.

that is assuming that the postcode lottery doesn’t mean any different.

stay strong my lovely,

carole x

Hello Minnie

Carole is quite right. Write down a time line, noting when things happened and for how long. Do have a look at the potential disease modifying drugs (DMDs) so that if you are diagnosed with MS you have an idea about treatment options.

Your ongoing symptoms could be part of the last relapse you’ve had. It can take absolutely months for a relapse to get partial or complete remission. Often, you don’t realise the symptoms are improving until some time has passed and you remember ‘I couldn’t do that two weeks ago!’

A UTI is almost guaranteed (if you do in fact have MS) to bring on at least a mini flare up, if not a total relapse.

I suspect that your lumbar puncture results might be the clinching factor that makes the neurologist decide ‘yes it is’, or ‘maybe not’ MS.

Multiple Sclerosis is one of the most irritating, perplexing diseases, known to humankind. We may share some symptoms, we may have very similar disease patterns, but I think it’s fair to say that no two of us have an identical disease.

So, gradually, over time (20+ years in my case), you get to know some definitives, but there are still little surprises in my life. I will never feel that I know for sure what is going on.

But as we sometimes say, ‘don’t count any chickens until the neurologist has rounded them up, done a roll call, and tells you how many you have’! (We don’t really say that, I just made it up!) Until you are told it is or isn’t, MS, it’s not.


Thanks Carole & Sue for your comments :slight_smile:

I can’t remember specific dates /times etc as some years ago and never gave the symptoms a 2nd thought when I was a carefree 20/30 something!! As taken individually, none of them really seemed significant.

Which of course they may not be!!

So it’ll be a rough timeline allowing for the menopause brain on top of everything else :smiley: :smiley:

Still confused though - got burning, tearing calves today and slightly burry eyes, and have wee’d no less than 14 times so far!!

Although I can’t wee until I’ve been up at least an hour these days, but can wee twice in the night -Bonkers!!

I never thought I’d be casually discussing my toileting habits with a bunch of people I’ve never met before on a forum, but have to see the humour where possible I suppose!

Carole you made a comment on another post indicating that good response to IV steroids may make MS more likely cause??