Worried sick about possible ms

[shellfone4]

Hello all ,



Would really appreciate some advice on this as I'm going out my mind, I'm in my 30s have 2 children one whom is severely autistic and hard work so due my life having not been very easy Gp thinks this could be stress related- anxiety, however I keep getting same symptoms and now have another new symptom which has terrified me completely, I have had visions problems for last couple of years and was told I needed glasses when wearing glasses vision improves however I must admit don't always wear them, I have had headaches , generalised pins and needles crawling sensation on my face numbness on hands once on calf of leg but generally in hands and sometimes feet. And most recently I have had a shaky feeling assuming tremor in legs bum I will be sitting and I can see my legs moving in certain spots I've also had a twitchy eye, I had a mri about 2 months ago as was convinced I had a brain tumour but came back clear with no lie sons however I know no that you also need a spinal mri to rule out ms ? I also had a oct scan at most recent eye test and no nerve damage detected Gp doesn't seem worried but has finally referred me to neurology for more tests as he knows I have suffered from really bad health anxiety but unfortunately appointment is mid July !

[shellfone4]

Also forgot to mention blood test results came back fine slightly low on vitamin d but nothing to worry about.

[YoureWinningAtLife]

Get your B12 levels checked.
I had a very similar experience with pins & needles, numbness etc which was resolved with b12 injections. I too thought it was MS.

You can still have some of these symptoms even if you are in the lower end of the normal range for B12 levels and Nice guidelines were (I know there’s been a recent update and I haven’t read it yet) to have injections every other day until symptoms resolve although that never happens, you get a loading dose of 6 injections at best.

Do wear your glasses though.

[BathsAreBliss]

Hi,

I have MS and there are lots of incredible DMT’s out there now if you do get a positive diagnosis, I have similar symptoms to you but do have lots of brain lesions (no spinal).

Here to handhold if you need it through the tests and process.

No brain lesions is a good sign!, Wishing you all the best for the future.

[shellfone4]

@YoureWinningAtLife
Thank you for your quick response. I have just double checked and b12 is on normal range at 684 but vitamin d was low and magnesium was low end normal range, I will however look into getting b12 injections, also did you ever have any test for ms ?

B12 684
VITAMIN D 31
Magnesium: 0.7

[Flossieskeeper]

B12 levels are fine so don’t waste your money on injections.
vitamin d levels are not fine however. The optimum levels for vitamin d are over 75(ish) from memory. Below 25 and you would be suitable for a loading dose of vitamin d so a level of 31 is low. You can get 20000 unit of vitamin dh over the counter so I would start with these. It could help symptoms.

do you take a multivitamin? Possibly worth considering if not. I’m not a neurologist by any means but you could have migraine symptoms with what you describe. Multivitamins will help.
did you have your folate checked too? Low folate causes issues .
It’s good your seeing neurology and that mri head was clear- hopefully you get more answers over summer.

[YoureWinningAtLife]

Your vitamin D is pretty low. Normal is 50 but needs to be over 75 for bone protection.
Did they also check thyroid and ferritin along with folate? Many women suffer with ferritin levels under 50 (has to be above 70 for healthy hair growth) but will be told ‘normal’ as low as 15 depending on the labs reference ranges.
I understood that the most accurate magnesium test was a 24 hour urine one so if your blood one is low then you must be pretty low!

I did have a CT with contrast initially and a discussion with a neurologist.

[shellfone4]

@BathsAreBliss

Thank you, so great to hear there is many new DMT's out there today!

Did you have to wait long for a diagnosis once reffered to neurologist ?

And thank you for your kind words of support :)

[shellfone4]

@Flossieskeeper

Thanks for reply :) I have just checked and folate is lower end but normal 3.6 I also checked ferritin and it's at 14 I will buy a multivitamin and hopefully might help! My Gp said the vitamin d was not low enough to cause anything however checking online is saying it can ?! Confused 🫤

[Flossieskeeper]

vitamin D definitely can cause symptoms at that low rate. Mine was 26 - as it went up I felt better.
folate could do with supplementing- will the gp not prescribe for that level? Some will.
id have a conversation with gp about this - realistically neurology will want everything optimised. low vitamin levels can cause weird and wonderful symptoms - what’s left after this is more of a concern then.

im on the wait list for neurology with a worry about ms but it’s a constant battle to keep levels of everything optimised, some of my symptoms improve with this but not all of them. I’m hoping they tell me it’s not ms. Unfortunately you do need to be a bit more forward requesting things from the gp than you’d like. I’ve had 20 years of having symptoms written off as stress . On that note - low folate can cause feelings of anxiety and low mood amongst other things.

[BathsAreBliss]

@shellfone4 It’s super quick once your in the system, I had a few negative tests (lumbar puncture, cognitive tests where they put electrical nodes on your scalp etc) and got the negative results just as quick as the positive MRI.

Definitely get on the vitamins - vitamins helped with all my symptoms and also one of the BEST things you can do to help MS (not saying I think you have it) is 4000iu of vitamin D a day! So that would be a win-win regardless of any diagnosis