New to this site.

New to here. I don’t have a diagnosis of ms. But I have been showing signs. Had mri it showed lesions on my brain couple years ago. Last year went on for a lumber punch unfortunately couldn’t be done. Just had another under X-ray guidance which was successful.
I’ve started showing signs of dizziness when standing.also originally went to my consault because of a diagnosis of trigiminal neuralgia (5years now)
My question is what we’re the early signs you had before diagnosis or after just being diagnosed

Hello and welcome! :grinning:. I know it’s not the most ideal of situations but I hope my answer might somewhat help?

Here’s my story. I

I got diagnosed 31st Dec 2019 (I’m a 25 year old female)

In Oct of 2016 and 2018, I had a relapse and was hospitalised (not knowing what it was of course).

Leading up to Oct 2016, I ate some bad food (expired) and I felt extremely weak, couldn’t eat and a few symptoms of food positioning. Few days later I got pins and needles in my feet, after 3 days worked it’s way up to my legs and lower back. Instantly new something wasn’t right. I dragged my self to A&E and got admitted that night. They did MRIs and a few tests etc. left with some drugs to take it went away , thought nothing of it.

Oct 2018, dumb me should’ve learned to read the expiry date on some plumbs, same thing again, the fruit has a use by date of let’s say today and I ate it the next day. Exactly the same symptoms , pins and needles in all of the lower part of my body. Same thing went to a&e got my drugs via the drip this time. Went home and was okay.

After that did lumbar punctures, MRIs, test etc even got a second opinion and yea turns out I’ve got relapsing remitting MS.

After diagnosis I get the following

  • what’s known as an MS HUG
  • pins and needles (only when sitting in certain positions).
  • I feel a lot more fatigue (don’t think pandemic helped) .

One thing that definitely helped me is getting a second opinion, I got this through my employer and this guy was an expert in his field! That helped me to then fully understand the condition I have; what I need to do to take care of myself etc

Sorry for the long answer and feel free to ask any questions :slight_smile:

Thank you for replying.
I haven’t been diagnosed as I’m waiting to results of lumber punch.
I went to dentist back in 2017. I was 28 pregnant with my youngest.I had to have my wisdom tooth out it didn’t go well dentist cracked my tooth next to it and ended up having that out week later.
So I was a dental nurse back in my hay day. I knew the day after when I woke up I was in so much pain it was abnormal. I couldn’t speak or open my mouth. Kept getting fobbed off by dentist. I decided to take it further and get a referral to someone at hospital can’t remember if was a dental surgeon. About 6 months pass on medication I get diagnosed with trigiminal neuralgia. The last two years it’s come and gone and when it comes back it’s much more painful then before. So I started taken a diary and notes of how long it lasts how long it goes away etc.
I honestly could write a book so I’m gonna keep it shortish.
I’ve started having pins and needles in my right hand. I’ve experienced dizziness a lot in last 2 months. My memory is so bad I forget peoples names who I’ve known for years. It’s getting progressively worse to point I’m very worried that it is ms. In beginning I totally fobbed it off because it was my jaw that was causing pain. Now I’m almost certain it’s ms. It’s been 5 years I’ve been struggling and now I’m taking it more seriously I’m so sure I have it.
But part of me feels stupid to think it. I honestly just wanted to know peoples experience with getting diagnosed and how there early symptoms started.

Hi Gemha,

It can be hard waiting for a diagnosis. I lost the vision in my left eye which ended up being optical neuritis. I also had fatigue and pain in my arm too. I was diagnosed within a year, after 2 mri scans, which I think is pretty fast for MS. I really hope you will get some answers soon.

Anna :slight_smile:

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Aww I’m so sorry to hear about that, I know how it feels to have to rely on the NHS and it can be really slow.

Have you ever heard of something called NICE guidelines? I know the MS society spoke to me about this regarding Ms. I just googled “NICE trigeminal neuralgia“. If you’re wondering what NICE is, go on there “What we do “ page (not sure if I can insert links. This may help in getting taken more seriously.

Well if I think about 2016/2017,2018,2019 took me 3 years to get a diagnosis. For me the trigger was both food based and since always checking my food, I haven’t had relapse since 2018.

I know it can be frustrating waiting but just do everything you can to press further and keep yourself healthy too.

For me if I didn’t go to A&E both times when I noticed pins and needles didn’t leave, I probably would’ve been worse off and I wouldn’t hesitate to go to A&E again even if it meant waiting over 10+ Hours.

Hope it helps.

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Thank you I will do that. I’ve noticed a lot of numbness and pins and needles in my left arm making it feel quite heavy also changes to my left leg. But it goes after a while.

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