Awaiting appt with Neuro - urologist said I have MS!

New diagnosis and before diagnosis
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Hi everyone, been lurking for a few weeks but finally got the courage to share my ?MS story.

In 2011 I ruptured discs in my lumbar spine, which have been causing back pain and sciatica for years. The opiates given for this gave me side effects of being a bit forgetful and dopey.

Fast forward to 2014, and I have an episode of sharp pain and blindness in my right eye. I was sick and terrified I was having a stroke, it was so painful. GP diagnosed migraine and gave me sumatriptan, which didn’t help. A few weeks after this my left leg collapsed under me causing me to fall. This was attributed to my ruptured discs.

Ive since had the right eye pain a few times a year. The left leg weakness comes and goes and my GP attributes it to the disc problems.

In summer 2015 I was diagnosed with Chronic Fatigue syndrome following 8 months of bouts of fatigue, which flares up now and again. Vit D and B12 are fine.

In November 2015 I developed bladder problems with incontinence and have been recently diagnosed with neurogenic overactive bladder. The urologist I’ve been seeing looked at my medical history, commented on the CFS and asked if I has ever been tested for MS. She then told me that several of her MS patients presented the same way as me and have similar symptoms. A referral to a neurologist was made in March 2015.

From the end of April this year I have also had:

  • constant fatigue, bedbound most days

  • random facial numbness

  • an odd vibrating feeling in my fingers (left hand)

  • forgetfulness, particularly forgetting words for things. I was holding an apple the other day and had clue what it was called.

  • dizziness and clumsiness, tripping over my own feet

  • an odd strobe light effect of my right eye

  • twitching which over the last two weeks has progressed to violent jerks, spasms of my legs and arms, some times my torso. It’s so strong that I can be lifted off the bed, my husband calls it my earthquakes!

Following these recent new symptoms my GP has asked for my referral to be prioritised.

I’m now thinking that all the symptoms I’ve had for years which have been diagnosed as other things may be connected to the symptoms I’m having now. Does this sound likely? Do my current symptoms sound like I could have MS? I have been trying to stay away from Dr Google and thought a forum was the best way to connect with people in similar situations.

Best wishes to all, and thanks for reading.

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Crumbs, you have been having a rotten time.

It’s just ‘wait and see’, I’m afraid - but you know that already, of course!

To prepare for the consultation with the neurologist, you might find it useful to do a summary time-line of what (as far as you can recall) was happening when in terms of your symptoms and difficulties. When things have been going on for a little while, it can be helpful to have a short overview of the highlights, so to speak. Whether there are any underlying connections is something only the neurologist can take a view on - but you can certainly help by thinking through what has been happening and being ready to answer questions and help him/her build up a history.

For what it’s worth, I would be a bit surprised if the neurologist didn’t want to post you into the MRI scanner to see what could be learned from that. But it could be a long road, getting to the bottom of things. Whatever is the matter (if indeed there is some sort of unifying disease process at work) it clearly isn’t one that is easy to pin down!

Good luck.

Alison

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Thanks for your kind reply Alison. That’s good advice, I was unsure as how to best prepare for the appointment but that’s given me a good structure to follow. I guess it’s trying to get things across clear when my brain is all fuzzy and I keep forgetting words. Definitely going to write everything down and take it with me.

I should have have mentioned also, I walk with two crutches and use a wheelchair for distances. My legs have just got weaker and weaker as time has gone on, but I’m hoping that’s my discs causing that as opposed to anything neurological.

Its all so new and bewildering, you just don’t expect to see someone about your bladder then have them tell you they think you have MS. She seemed so certain!

Anyway you’re right, wait and see is all I can do, I just thought I’d ask for a bit of help making sense of it all. Really appreciate it.

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