Hi! Looking for advice :)

New diagnosis and before diagnosis
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Hi I new here and looking for some advice.

A month ago I went to the optician with blurred vision and dizziness which I thought was being caused by my low heart rate and was found to have swollen optic nerves. I was admitted and had a lumbar puncture which was normal (suspected inter cranial pressure).

A couple weeks after I developed tingly weird feeling hands that has slowed moved to all over my body. My legs are heavy and I feel shaky like my organs are vibrating. I also have this strange tight sensation around my stomach. I feel cold and like I’ve had my hand and feet in the bath for days and my skin is sore.

I’ve had blood tests and only had low vitamin d even though my diet is good and I get outside loads.

I stupidly googled it and saw the possibility of ms but I wonder whether I had some damage from the lumbar puncture or even a delayed reaction to my C-section last year. I have lost a lot of weight in the last few months, totally intentional but I do sometimes wonder if they blame everything on my weight.

I’m waiting on a neurology appointment but wonder whether I need to push for an appointment as I’ve been put on nerve pain/damage medication.

Any advice or if anyone can relate to my experience I would appreciate it.

Thanks x

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Everybody Googles and Dr Google always thinks its MS and sometimes Dr Google is right as most of us old-timers on here know from personal experience, and sometimes Dr Google is wrong. Maybe the best way to think of it is that MS is probably one of the things that the docs will want to eliminate as they go through the process of finding what ails.

By the way, I really don’t think that anything you’ve done or not done has the slightest bearing on all this. If you do turn out to have something amiss with your central nervous system, it isn’t going to be your fault.

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Hi

I am finding it so hard to get any answers from the hospital or doctors.
Mr google does seem to point everything to MS though.

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Thank you for the replies! I think I’m just anxious and a bit low - the nerve tablets are kicking my butt a bit and if I’m honest these symptoms are driving me mad. The hands are the worst touching anything is just horrible I can’t even touch my hair.

I’m feeling sorry for myself and I need to give my head a wobble :joy:

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Sounds like you have every right to feel a little sorry for yourself. Be kind to yourself.

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I had various appendages go numb over a few years, before I lost my eyes, and realised things had taken a shite turn. (My eyes came back)
Sunday is my 26th anniversary of my dx…
I did live about ten years without 100% feeling in my hands, but I guess I’m one of the lucky ones. I mask my symptoms reasonably well, not many people know I have it.
I wish you the best. If it is what you fear, remember you’ll only hear the worst case scenarios. People love a sob story, they’re more likely to give money to someone in a wheel chair, than someone who looks ‘normal’. Take each day/week/set back (?) at your own pace, everyone’s different.
:woozy_face:

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Thank you for your reply and I’m so pleased your eyes came back I’m hoping my damage has not got worse at my appt on Saturday.

I can’t imagine living with a dx as ms for so long it’s puts my problems into perspective!

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The point wasn’t so much ‘woah me’, I’ve now lived with it longer than without it, but more, It’s not the end, as it may seem. :blush:
You adapt. You have good days, you have bad days. I was lucky, i forgot i had it for a decade before it helpfully reminded me. Steroids seem to half the bad days. I weened myself off zombie drug gabapentin, and now take CBD daily. I said a straight No to the covid jibba. I eat lots of fruit. You have to find what works for you.
But im here anytime.
A lot of my posts get taken down, so feel free to p.m. me.

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Thanks again for the reply it’s nice to be made welcome considering my lack of diagnosis!

I woke up this morning feeling like my ribs were stuck in a vice! It’s settled now but it still feels like my innards have been folded in half and got stuck in a letterbox😂

I still have some optic nerve swelling it’s stable but my ophthalmologist is writing to the GP to ask for my neurology appointment to be hurried up. My hands are so sore and stiff now too I’m dropping things all over the place :woman_facepalming:t2: I defo see a link with my stress levels I got myself in a tiz this morning (soon to be ex husband related) and my symptoms were far worse or at least affected by the fact I wasn’t concentrating on my hands and couldn’t keep anything in them.

Hoping for some answers soon :blush:

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