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 !

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

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.

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.

@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

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.

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.

@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 :)

@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 🫤

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.

@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

If you have lots of symptoms in your head/face and no brain lesions it is incredibly unlikely to be MS. I am sorry you are so distressed, anxiety itself can cause a multitude of symptoms so there may well be no serious illness going on. I hope you get some answers soon.

I have MS so wanted to weigh in. I think it would be very unlikely to have MS with the symptoms you describe and to also have a clear MRI. Anything 'generally in hands and sometimes feet' would make me think it wasn't MS too, as those sort of things in MS tend to be more sustained and localised. Things like your vision problems wouldn't be MS either, because that would usually show on a brain MRI or opticians can sometimes spot them.

I hope you get proper answers from the medical professionals soon, but if I were you I'd feel reassured from the clear MRI.

@ammpersand

Hello thank you for taking time to message.
How have you been keeping up since diagnosis ? If you don't mind me asking what led to your diagnosis ?I've since then had some very strange twitches all over body mainly legs and also noticed I'm getting the weird crawling sensations on my back and head when I start to feel stressed or hot. Also buzzing feeling in legs It's so strange as I could get in a really hot shower and be fine but I'll move around hoovering and start getting these sensations all over 😫mainly back and head, just so scary! Vision wise I requested a ct scan and options and was clear so trying to be positive about that but these symptoms just won't go away x

@similarminimer
Hi sorry for late reply have only just noticed your message. Thank you for this ❤️ I've been Googling the worst thing to do! and have read that some people had clear brain mri and positive spine. I haven't had a spine one so straight away started to freak out,However I will be seeing a neurologist on 29th may have been waiting for months I luckily called up and managed to get a cancellation date!

All good to be honest! It's not the disease people imagine nowadays. There are so many good treatments. I haven't had any new symptoms at all since starting treatment five years ago.

I had optic neuritis in one eye, vertigo, and tingling in both legs as first symptoms. Apparently it's rare for this to be in both legs. It kind of felt like the vibrations from a car engine if that makes sense. I haven't felt the same thing anywhere else on my body. If it affects larger parts of your body or moves around, I think it's less likely to be MS, especially with a clear MRI.

It's possible to have a clear brain MRI and lesions on the spine, but that is much more unusual and the symptoms tend to be different when this is the case. Symptoms affecting your eyes or head cannot possibly be caused by spine lesions, so usually a zero brain lesions and such symptoms would suggests a different cause. Additionally, spine lesions tend to cause much more severe symptoms affecting mobility etc. I would be shocked if you had spine damage from what you describe.

I honestly think it could very well be anxiety. BUT I do think women are too often fobbed off with 'anxiety' or 'hypochondria' when that's not the case, so I think you're right to do your due diligence and rule things out..

I find that checking any symptom online results in my imminent death. I'd go with what your GP says and forget about what American websites geared towards extracting more treatments (i.e. money) from insurance patients say. My sister is privately insured and the range of tests she had done for a minor issue that turned out to be nothing was mind boggling. The only time you need to worry is if the NHS gives you an appointment even within a month.

I'm astonished your GP says your Vit D level is nothing to worry about! That's well below the range for what's healthy. I had the same pins and needles, headaches, exhaustion and skin crawling as you when my level was 23 and my GP gave me 250,000iu to take in a weekend as an emergency dose to get my levels up! You should be taking 4,000iu at least.

Have you ever had Epstein-Barr virus / glandular fever?

Your B12 at 684 may look fine but it is your B12 store you need checking. Had you taken a B12 supplement before the test? This can make your levels look falsely high, it is the stored B12 which protects your nerves. Have you had your thyroid & iron stores checked? These, along with your B12 work hand in hand & if one is low, chances are the others are. The trembling feeling you are getting is internal vibrations, you get these if any of the above are low. Have you asked to see a neurologist? This should be your first call, there is often a very long wait on the NHS, if you can afford a private consultation, it would be worth it & often they can then transfer you to their NHS list for any scans & tests they want done. My neurologist told me at my first appointment that he thought I may have MS, but it turned out to be a combination of Vitamin B12 deficiency & neurotoxicity caused by taking multiple courses of Nitrofuarantin for bladder infections which I'm turn depletes B12 stores. I self inject B12, I'm still numb & my balance is rubbish, but I can manage my condition myself.

My first symptoms were very dry painful eyes & pain I thought was arthritis in my feet, my legs & feet started to go numb, then my lips & fingertips. My eyes were so dry I had to be referred to eye casualty because the surface of my eyes looked like corrugated cardboard, I had to have intensive courses of steroid & moisturising drops & gel that I put in at night. I still have to use them now & gabapentin for the pain in my legs & feet, which tingle, burn & spasm at night.