Newly Diagnosed: I’m not drunk, I have MS... - My MSAA Community

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Newly Diagnosed

MSUnicorn profile image
22 Replies

I’m not drunk, I have MS.

Finally, a diagnosis after years of craziness and perceived hypochondria. While I realize that a lot can change, my plan going forward is to just go with it and live in the present.

I am wondering if anyone else has experienced hives or abnormal skin shedding due to MS? In addition to all the other symptoms, this has been happening to me.

22 Replies
Jesmcd2 profile image

Hi and welcome to the nut house MSUnicorn ☺️ I have and I do with the the hives and skin shedding. My Dr calls it psoriasis 😐 I call it itchy!😭🤗💕🌠

MSUnicorn profile image
MSUnicorn in reply to Jesmcd2

Thank you for you response and I feel for you girlfriend! Psoriasis has been eliminated, as most other skin shedding diseases. Derm says it is not a skin thing, rather internal? Still searching...

kdali profile image


twooldcrows profile image

so sorry you had to say you have it but it does feel good to prove to people that it isn't in your head takes for ever to prove and then still act like nothing is wrong ...wish we could make them feel what we do....i am sorry bad day ...well not really i was outside doing some trimming and lost balance and ended up falling against the tree ...hurt but more for my pride ...hahahhhahah....talking about the shedding i just call it dry skin ...if i don't remember to put on lotion on legs yes they can make i look like my legs have dandruff...ahhahahahhaah...lots of weird stuff with this monster but you just learn about it as you go along if it bothers you call the doctor and let them know what is going on ...just try to be happy as you can it makes it easier to cope and happiness....

MSUnicorn profile image
MSUnicorn in reply to twooldcrows

Thank you for taking the time to respond and I am sorry you fell... I used to think I was just clumsy, now I have a legit excuse! Mine is not dry skin though... I drink lots of water, introduced flax seed oil, run a humidifier and have so much lotion on- I literally slid off the toilet seat! All skin peeling diseases were eliminated with recent labs. Still searching...

goatgal profile image

You're now in a club that no one really wants to join, but the benefits of membership are many. No one here will think you are imagining symptoms or manifestations, no one here will think you are drunk because you can't walk a straight line, we know what you mean about shedding and itching, and best of all, when you stumble or fall, we are here to pick you up. Welcome!

MSUnicorn profile image
MSUnicorn in reply to goatgal

I love this! Thank you!

leking1 profile image

Welcome to the group MSUnicorn! I was diagnosed almost 40 years ago, and I shed skin like a snake, but no hives. I remember all those times of wondering if I was losing my mind, imagining all the strange things my body was doing, and the relief I felt to have an answer. Not a good answer, but it explained what was happening to me! I love your response, keep going forward 1 day at a time! It works! We are here for you, and we get it, because we've got it!

We understand, and I am sorry that you have MS, but do glad that you finally know what is going on..after 40 years I really walk like I'm drunk, but I can still walk!

MSUnicorn profile image
MSUnicorn in reply to leking1

Absolutely and thank you! I told my family that MS is going to be my excuse for everything going forward 😆

greaterexp profile image

I’m sorry for the diagnosis, but I sure can relate to feeling relief when I was finally diagnosed. I think so many of us understand.

Peruzzot profile image

Welcome to the group.

Talk to a dermatologist about the skin condition. It might not have anything to do with MS. It might be just an allergic reaction to something you're coming in contact with, or it might be psoriasis, or some other skin condition that is treated with a medication.

MSUnicorn profile image
MSUnicorn in reply to Peruzzot

Yes, thank you. I have consulted dermatologist (several times, several diagnosis, several treatments) and concluded, not a derm thing, something internal. Immunologist wants to start Xolair for hives, but no idea about skin peeling. All skin peeling diseases were eliminated with recent labs. Still searching...

IFwczs profile image

Do you have relapsing-remitting (RRMS) or progressive MS (PPMS or SPMS)? Are they putting you on any DMTs (Disease Modifying Therapies) for MS?

Also, as a newly diagnosed, you may not know that your diet and exercise are of utmost importance.

bxrmom profile image

Welcome to this wonderful group MSUnicorn This is a safe place to vent, celebrate, cry, and share your hobbies. MS is a crazy, unpredictable disease that we all share and understand.

I can relate! Over 30 yrs of “nothing is wrong with you” dispelled with one MRI 🧐Welcome!

RoyceNewton profile image

Yes, I have a bunch of t-shirts, love them. The mask does seem, to get me better service, instead of being ignored, one advantage I suppose. IO might less sun a little more moisturizer. In your ms studies that you will now undertake, you will learn that lots and lots of really strange things MIGHT happen to you. look for the strongest Disease-Modifying Therapy (DMT) that you can legally get. Strongest means fewer relapses. Ocrevus. Remember this is serious medicine and it will have side effects.

GOOD LUCK in YOUR ms journey

twooldcrows profile image

you always have the greatest answers for anyone and all of us ...thank you Royce ...have a wonderful day everyone we all are these weird people but that is okay for it is just fine for all of us ya all and hope for lots of wonderful fun days filled with lots of laughter and many smiles for all to see if you take off the mask for a second ....hahahhahahahahahhahahah..

Sezlatham profile image

Welcome to the family love the image, bought a tshirt recently like that lol. Hives yes, has ms since 2002 but finally got diagnosed in 2006 after spending a fortune on frustrated drs who couldn’t figure out all these strange symptoms I’m on ocrevus now after having tried so many others over the years. It’s a long and hard journey but everyone on this site is here to support and help. The most important thing is to stay positive, ask anything you want to know no matter how embarrassing we are all in the same boat xx

MSUnicorn profile image
MSUnicorn in reply to Sezlatham

Thank you! I figure I have had it for years now and finally it all makes sense! My short term memory is pretty bad already... I would never admit this to anyone else, but the other day I got out of my car without shutting it off or putting it in park and this morning I left the water faucet running in the bathroom after washing my hands... pretty scary for me.

Sezlatham profile image
Sezlatham in reply to MSUnicorn

I’ve done both of those things a few times and of course panicked, just take it in your stride 1 day at a time . Don’t panic breathe through those moments and take things slowly . I leave a room to go do something and when I get there I can’t remember what I went to do , I breathe through it sit down and it comes to me when I look around the room staying calm

EmpressofMS profile image

Welcome to the fam MSUnicorn! No one wants to hear the words when diagnosed but it explains so many years of questions and symptoms... Wendy 🧡🦋

MSUnicorn profile image
MSUnicorn in reply to EmpressofMS

Yes it does!

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