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Mask on face toooo tight???

Hello all!

Just wondering if anyone has this feeling? It feel’s like I am wearing a mask on my face that is far too tight, almost like my face and head is being squeezed… does that make sense?

It make’s me want to punch myself in the face!! Horrid!!!

I am due to see Neuro next mth, prob not worth mentioning it to him though as everything I say he tell’s me that it is not MS related…including fatigue, bladder retention, pain…

Only been DX for a year and still a bit lost!

Any advice gratefully recieved :slight_smile:

Thank you

Clare xx

Hi Claire How awful that your neuro says none of your symptoms are ms related as far as I’m concerned they are especially the fatigue, that is one of my worst symptoms and I’ve been diagnosed 18+ yrs. I can relate to your mask on the face but I only suffer with it on my forehead almost like I’ve got a sweatband on that I want to pull off. I wouldn’t recommend punching yourself in the face that might hurt even more, I would deffinatley mention it to the neurojust so that it goes down on your records. Do you have an ms nurse that you can talk to?? Hope you start to feel better soon Sue x

Thank you Sue,

No, I don’t have an MS nurse, my neurologist thinks it not needed as I am still working… ?

May I ask? How do you control this?

I am beginning to think a lot of this we just have to live with?

Its sooo frustrating!

Thank you again

Clare xx

-I too have experienced the tight face sensation, felt like my skin was about to crack wide open and expose the underside of my face, dreadful feeling. I think it may be sensory and therefore definitely related to ms.

Dont know if its connected but have you had your vit.d3 levels checked? Mine were extremely low, so gp gave me supplements and gp told me also to take evening primrose oil. Ironically that tightness disappeared as my levels increased. Ive no idea if its related, but in my case it could have been my skin was in very poor condition pre my supplementation, so the same may be affecting you?

Ask your gp to test your blood for vit.d3 levels, and if normal then supplementation can be ruled out as being the main cause of skin tightness - only leaving ms sensory symptoms.

Its a case of elimination, although your neuro sounds rather like mine. She still maintains most of my symptoms are not ms related, however all other test have proved otherwise.

bren

x

Hi Bren

Anything is worth a try so thank you!

I have never had a blood test so it would be interesting to find out.

My neuro is an infuriating chap… speaks so quickly!

Sorry your’s is not listening either

Thank you for answering x

Hi again Clare Unfortunatley it is something we have to live with :frowning: you do learn after so many years to adjust your life accordingly. It’s a terrible disease but I try remain as positive as possible and always think there are people far worse off than me. I can’t understand why your neuro dosen’t think you warrant a MS nurse just because you work, that’s riddiclious, I’d put pressure on next time you go. Stay positive Sue x

Hello Sue,

Thank you for taking the time to reply again.

My neuro just said you now have a DX, it doesnt change anything, its just a label… see you in six months…

It has been a bit of a challenge but I work for a hospice… I see daily that life can be cruel…much harder than I am going through…

Clare xxx

Clare, If I was you I’d be asking to see a different neuro, it might be a label to him, but it’ a b****y big issue to us that have to live with it. He wants to try walking in our shoes! Or not as the case may be at times. Keep that though in your mind that daily life can be cruel ( especially when you see what you do working in an hospice) We may stumble from time to time and go over some very rough humps with some terrible sensonary feelings but fight the fight and do one thing. Stay positive Sue xx

Hi Clare, I haven’t had this on my face but always have the feeling on my right foot , it’s So annoying. Sometimes it drives me mad . The only thing I’ve found to do is Massage my foot. I think it just distracts me really. There are so many things we have to live with, you must mention it to a doctor , see if they can offer any advice . Hope x

MS nurses - can be a great support. Of course you should be able to speak to one with a diagnosis of MS. I would phone your hospital and ask to be put through to the MS nurses and see what they say… Sometimes nurses can be more human that doctors- only my opinion. TBH your neuro sounds a bit of a muppet. Is there another neuro you could see for a second opinion? In my hospital there are 2. When my primary neuro turned muppet like and gave me incorrect advice I went to,the second who gave me the correct advice. Which I said was correct all along - bang head against wall. Neuros listen properly to your patients please we quite often know more than you. Good luck Min xx

hi claire

thats rubbish of your neuro to say that bladder retention isn t ms related.

my bladder nurse explains why i have trouble with my bladder.

the ms society do an information sheet on it. i suggest you send off for this (free) and show him/her next time you go.

good luck

carole x