Last reply 2 weeks ago
Symptoms and feeling anxious

I’ve been experiencing new symptoms from that which I had in 2014 when I had 2 mri’s that showed lesions but I didn’t have a 3rd scan which showed active lesions so I was told back then they couldn’t officially diagnose ms as they needed all 3 scans to show active lesions. Now 2018 and my balance is terrible, I stand on my feet all day in pharmacy and feel like I’m swaying, tingly and pins and needles in my forehead and my face went numb the other day. I get pheriperal nerve pain and I have damaged nerves. I also have autonomic neuropathy. I haven’t followed up on symptoms from 2014 as I was so tired and drained, Have I been irresponsible with having some lesions there? I’m going to see the old neuro in a couple of months. What were/are your symptoms? I think my type is relapse remitting? Thanks

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spangle
3 weeks ago

@shan80 Hi, diagnosis can be a long and stressful process. Took 2 years of testing before I got mine, as didn’t meet the classic criteria.
I had a lot of problems with balance/ dizziness, sometimes felt like the floor was moving. Had severe pain in my back and neck (neuropathic). Lots of numbness/tingling in hands and feet. My main issue was fatigue, felt like I was wearing a suit of armour, everything was so heavy walking was difficult.

Stick with the neurologists though they’ll get to the diagnosis eventually. Since mine I’ve been given pregabalin for my neuropathic pain which has really helped. Plus when you go onto a DMT it can really help (RRMS only though). My symptoms are still there but much reduced now.


stumbler
3 weeks ago

Hi @shan80 and welcome.

A diagnosis of MS has to satisfy the McDonald criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria).

It’s good that you will be seeing your Neuro shortly. A further MRI should be able to allow for a diagnosis, then you’ll be able to discuss how best to manage going forward.

Let us know how you get on.


grandma
3 weeks ago

Hi @shan80 and welcome. As Stumbler says it’s good that you are seeing your neuro soon. You are in what we have termed ‘limboland’ worse place in the world to be. We’re know what it’s like, but we’re always here for a natter, a moan, a celebration, a cry. We don’t judge, we all know what it’s like and remember there is no such thing as a silly question if you do get the ms diagnosis.😍


jolea
3 weeks ago

Good luck.
You need to attend appointments. Make sure they do a LP and further brain and full spinal cord MMR scan with contrast.
🙅‍♀️


shan80
2 weeks ago

Thanks everyone for the welcome and replies. I have repeat form for MRI brain and MRI spine, I’m nervous to read about lumbar puncture and spinal fluid sample. But I guess if that’s what’s required to get a diagnosis then it has to be done. What were your symptoms that you dealt with leading up to diagnosis? How are you all now you have treatment plans and are on medication? Thanks again


stumbler
2 weeks ago

@shan80 , don’t worry about possible procedures in the future. Otherwise, you can spend your entire life worrying about things that may never happen.

Hopefully another MRI will formalise things for you.

What were our symptoms and how we are will provide nothing useful for you. MS is an unpredictable condition, which is different for every one of us….


grandma
2 weeks ago

We’re all so different that I agree with Stumbler that all of us giving you this info isn’t necessary at the moment and will lead to info overload. If and when you get you diagnosis we’ll still be here and you can ask all you like. We’re here for a natter, a moan, a celebration, a cry, a rant, we don’t care we’ve all done it before and we don’t judge. If it does turn out to be ms, remember there us no such thing as a silly question😍


hels
2 weeks ago

@shan80 I was really worried about LP but it was nothing to worry about, honestly wasn’t. If you message I’ll talk you through my LP x

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