feeling alone and scared

New diagnosis and before diagnosis
1

I have yet to been diagnose and don’t normally do these kinds of things but my journey started over six months a go I started having painful pins and needles in my left foot that lasted several months I put it down to a break i had. They then spread into my tongue and lips and then the left side of my face. I then developed misty vision in my right eye and pain on movement thankfully it wasn’t optic neuritis.

Whist this was going on I development a really heavy and painful left arm. I also have had tremors and spasm in my right arm and leg which my husband has said I have for years but are now worse. I get tried very easily and some days do not want to get out of bed and was very dizzy during this time.

However the worse symptom that is over the last month I struggled to pass any urine and went into full retention last week and have now been catheterised and I have no idea what the plan with this is. I have my first appointment with neurology on the 30th. I am so worried that they will not take me seriously. What can I expect from the appointment.

Any advice would be amazing, Im only 30 and worried what the future holds.

2

Hi Stacey,

I’m sorry you feel alone and scared, it is worrying when our bodies throw up these things which may or may not have causes linked to neuro disorders!

I don’t have advice as such but can relate to some of what you mention. I visited my GP last year having developed altered sensations in my right arm, hand and foot which had been constant for 3 weeks at the time. Just prior to this I had been clumsy, dizzy and sometimes breathless at work which was in a kitchen in hot weather.

My GP ordered various bloods all of which came back normal and then referred me to Neuro.

Fast forward to this summer and I kept tripping on my right foot which I put down to not being good at walking in flip flops, for a week or two. I also noticed my weeing was very stop/start and taking more effort.

Suddenly one mid morning I hadn’t been to the loo since 9 the night before and went into A&E where they catheterized me after checking for infection etc. Sent me home on TWOC (trial without catheter) ie keep it in for 5 days then have it out to see if bladder function restored.

3 days later couldn’t balance or use right leg at all so back to A&E where I was admitted and given 2 MRI scans and a lumbar puncture, plus 3 days IV steroids.

Symptoms improved almost immediately!

My advice would be to think about any symptoms that may have a neurological cause and write them down in a timeline, how long they lasted, whether they have recurred etc. As you’re only 30 you don’t need to think back quite as far as me as I have a good 20 years on you…but I included as much as I could remember.

ie. - random short lived numbness/tingling; numerous vertigo episodes for a couple of days; burning ankles for a week or two; and so on.

Neuro (assuming this appt stems from the bladder retention??) will certainly appreciate as much orderly information as you can give and may do some simple reflex tests etc and refer for scans.

It may or may not comfort you to know that I was diagnosed recently with RRMS - but that I have probably had it for decades according to my Neuro. This means I have had 30 odd years of very mild if sometimes annoying symptoms which have only just started to have any real impact on me. I guess all this tells you is that * IF * MS is eventually diagnosed, you could very possibly still have years and years of little impact on you.

Please do let us know how you get on and maybe one of the other lovely folk on here can offer more advice

Minnie x

3

Hello Stacey

What Minnie has told you is excellent advice. Given that she’s very recently diagnosed, her thoughts and impressions are spot on.

Try to think back and write as complete a time line as you can, listing symptoms that ‘might’ be connected to report back to the doctors.

If you can manage it, try not to worry and panic too much. What will be, will be. And worrying changes nothing.

When you get to your neurology appointment, try to take someone with you to help you remember what is said to you. It’s very common to come out and not have a clue what was said and what happens next.

Best of luck.

Sue

4

Thanks for your advice… Im usually ok I was just having a moment and the advice that you have given me is great. I had been referred to the neuro team before the bladder issues started thankfully the GP was great and I wasn’t fobbed off.

I’m glad that I was on the right lines with the diary of symptoms and will bring my husband with me as I am so forgetful at present, I think on reflection I have had issues over the last 10 years but just put it down to being stressed or tried. I will let you know how I get on it is so nice to know I have support from people who understand I think its being in limbo is the worse thing at present.

Thanks

Stacey - 28124