Multiple sclerosis - please help!

[purplerain37]

Evening all.

Please could I ask for those who have MS, what your first symptoms were? I know everyone is different, but just want to see it i can see any similarities in my current circumstances.

I'm currently experiencing some strange symptoms and am about to have some tests to see if it's MS or transverse myelitis. I'm really petrified. Like really really petrified.

Just thought I'd add to this thread as I've just been through something similar and I always look on Mumsnet for reassurance! I had about 6 weeks of neurological symptoms - pins and needles in hands and feet, worse on right, nerve pain in legs and arm, burning feet, all kinds of twitching and an overactive bladder. A v weird cocktail of symptoms! Obviously thought it was MS ... but after a clear MRI, the neurologist said a lot of people have unexplained neurological symptoms that aren't MS or anything else serious.
I also had an eye issue at the same time (cue major worrying!) which turns out to be glaucoma. Not great but something else entirely.
I hope this helps someone down the line.

To all going through this.
please contact MS Society on their helpline 0808 800 8000 and ask for your local branch.
you’ll find lots of support and advice.

@Hats79 thank you for writing this.

My symptoms are back again and I just don't know what to do after neurology did all the tests and pretty much said what you're said. It's pretty miserable!! Are you still getting your symptoms?

@purplerain37 so sorry for slow reply. So it did get better, then it's returned with a vengeance. This time leg pain is the worst, with a bit of tingling etc. I am seeing neurologist privately next week as my first NHS appointment isn't til end of March and I just get really anxious! Not sure what he'll say but will update. Not sure how to pm on Mumsnet but feel free to if this is still going on for you

@purplerain37 and let me know how you are

Just posting to add I’m going through similar. Numbness, pins and needles in my legs. Was initially my left leg but now my right leg too. My left leg started 5 years ago. It comes and goes. I have bad days where i can barely walk and days where i feel ok. I’ve fallen over a few times as my right foot can go so numb. I’ve to,d the gp im worried it was ms and he said it wont be as i have no eye symptoms. But then I read not everyone with ms has eye symptoms. 🤷‍♀️

I am thinking of seeing someone privately. Is a neurologist the person I need? Not sure I can afford a private mri though.

Hi @FeegleFrenzy
Your GP is wrong. Lots of people with MS have no issues with their eyes at all. Is there another GP in your practice who you could talk to? Ask for a neurology referral.

You might not have it at all, but the symptoms you have need investigating in any case.

If you are in UK, shift.ms is a good online resource. The MS Society too.

I am in Ireland, on the off chance you are here, feel free to PM me. I can send you some info on the Irish system.

Take care. It can be scary and lonely truing to figure out what's going on, but I found that once I knew what I was dealing with, it became a but easier.

@Hats79 let me know how you get on please and what they say.

So a few weeks after I started twitching. Like all over. Constantly, it hasn't stopped since. I was certain I had ALS and went down a complete rabbit hole. However, neurologist then diagnosed me with something called benign fasciculation syndrome - which can include sensory symptoms too. I've been put on a couple of medications to help relax the nerves / muscles - but I'm still twitching away!

@purplerain37 ohhh I'm glad to hear the word benign but I am familiar with the rabbit hole you went down so my sympathies! Did they say whether it would resolve in time?
I saw the neurologist this morning who said still doesn't think it's MS, probably something "functional" and to enjoy Christmas in short! In one way that's nice, but it's crap dealing with symptoms like nerve pain and having no answers isn't it!
Anyway I'll try to post back here if I have any further updates and wishing you the best.

@FeegleFrenzy Sorry to hear you're going through the same. It's horrid! I think if you see a private neuro they could then write to your GP and ask them to refer you perhaps? MRI would be pricey. All the best to you too

If you have tingling numbness issues rule out B12 deficiency. This can affect bladder bowel too.

When you have blood tests ask for a copy so you can have a good look as if your reading is right at the bottom of the healthy range it might still cause you issues but you will be told that everything is in range.

If you have stomach absorption problems you can need B12 injections rather than supplements so of your B12 is low and you supplement follow up with further tests to check your levels rise.