I’ve been on the site before researching during the long “probably, maybe, no, yes” journey many of you have probably travelled, got definite diagnosis of PPMS yesterday, and it was a bit of a blow if I’m honest after being told 3 weeks ago that all my symptoms were due to my spinal cord injury. LP was positive and brain lesions present. In 2 1/2 years I’ve gone from professional articulate mother to dithering imbecile.
I would like to ask if any of you started developing allergies with MS as I’ve always been very healthy and suddenly I’m allergic to all sorts even getting prickly heat out in the shade. I just wondered with this being an auto immune disease. I have so many questions but my head’s in a muddle but I welcome all feedback and introductions, and hope that one day I can help some of you too.
Hi Min, Welcome to our little world, I’ve found this the very best place to come for help and advice, it’s been an enormous help to me to know I’m just the same as everyone else on here and not all alone. I can’t help re the allergies…sorry…1001 symptoms but not allergies ! I’m sure someone else will be along tomorrow that can be of more help than me. I am sorry your road to dx was such a rocky one,it’s rubbish, I know, but somehow we do learn to cope. Best wishes Nina
Hi Min, You will find that everyone has similar, but different symptoms. I was dx in Jan 07 and nothing happened till Jan 11, when I started limping after 100yds and now have a constant left leg limp. I have an electronic foot lifter now which I use only once a week. I lose ballance slightly,strange cramps in lower left leg, left hand fingers cramp in and out first thing in the morning, short term memory loss, warm weather tires me out, arms and legs are weaker, hardly any grip with left fingers and tinitus. There are other minor things as well. John.
Sorry for your dx Min - it is a shock I know but you’ll get your head round it, just take it a day at a time. Do not try to think of the ‘what ifs’ but live for the moment. This forum is a wonderful place to visit, it gives you information, support and friendship in equal measure. Sorry I can’t help about the allergies but every person’s MS is different, so who knows? Hopefully you have a good support system at home that will also get you through this. Teresa xx
Thank you for your replies. Nina and John you are so right that everyone’s symptoms are so varied. I don’t know if the allergies are related. I have the balance, walking, bladder, stiffness and spasm issues but the total fatigue and intolerance of heat are also crippling. I am very fortunate Teresa as you mentioned that I have a very supportive family. I’ve introduced my 15 year old daughter to the website and forum as of all my research this seemed the best.
Take care and thanks again.
Hi again Min and lovely to see your introduction.
I think you might be experiencing Uhthoff’s Syndrome… or Phenomenon… it’s when heat really affects MS symptoms. In fact years ago it was one of the ways they used to dx MS by checking symptoms after a hot bath.
I get it and for me it does feel like prickly heat… esp on my back where it feels like sharp pins are being stuck in my back.
As others have said, keep as cool as possible. I’ve also found it useful to change all bedding to 100% cotton, including nightclothes. Helps a lot if you get this at night.
Take it one day at a time Min. It’s a hell of a lot to take in and for now just take it very slowly and lots of TLC.
It might help to think how you would treat someone else who had just been given this news, and then treat yourself like that. (Us women are often so much better at caring for someone else than ourselves!).
Look forward to seeing you on here and getting to know you… come and ask any questions hon… we’re all here for you.
Just wanted to say welcome to our “gang”, lovely friendly bunch of
guys and gals, also very informative.
It takes time to get your head around a dx but it’s better to know than
not to, almost a relief to know what is causing your problems.
Take one day at a time, and above all, be kind to yourself.
Thanks to you both Pat and Pam. Have spent the morning informing DVLA, Mortgage insurance etc but getting nowhere fast. When I’m more settled and my lists of things to do is complete I’ll be much happier, but a big thanks to you all, everyone is so nice and helpful, am honoured to join your community.
Hi Min, So sorry to hear about your recent diagnosis, and all your unpleasant symptoms. Re. the allergies - I
ve just suddenly found olives give me instant diaorrhea, which is a shame as Id only just started liking them! Also, I can
t stand the smell of: coffee, oranges, bananas and fish. Really weird! Im discovering that MS is a really individual thing, and everyone has different symptoms and experiences. I do hope you soon find ways of alleviating your problems with heat, and that you find a way of controlling your pain. I understand that PPMS can develop really slowly, and that there is still some chance for periods of at least partial remission. I was diagnosed with MS in January, and with PPMS in April, so, like you, I
ve a lot to learn. I think its very much a question of living each day at a time, and trying to be easy on yourself, and not to overdo things - MUCH easier said than done, though! Try to be gentle with yourself,
Love, Faith WB.
Thanks Faith. I’m in that strange place at the moment, waking up at odd hours wondering if that consultation really happened but realising it did then being thankful that I eventually have a diagnosis that explains all my symptoms. The acceptance that I’m not just soft or a hypochondriac imagining all the symptoms from when ms was first suggested a year and a half ago. On top of that there’s the words from my neuro that I may work if I can find a job doing no more than talking to people for no more than 3 hours.
As if someone’s going to offer me that. I have the added complication of a spinal cord injury so what he said makes sense but I’ve always worked and dreading Thursday when I have a meeting with my employees to discuss it. I’ve already been off sick for 2 1/2 years so they can terminate my employment and the worst part is that if it was me, I probably would too if for no other reason than I can’t do enough hours to earn a living wage.
Sorry to rant but feeling a bit overwhelmed by it all.
Thanks again. Take care.
Hi Min, sorry to hear that you’ve qualified to join our group. I was dx in 2007 . It all started 10 years before when i noticed i couldn’t wiggle my toes on my right foot as well as i could with my left. I finally went to the doc when i started walking with a limp. In someways the dx was a bit of a relief, i sort of guessed anyway, but a least i could put a name to it rather than trying to kid myself i was just unfit. Anyway, hope you find this group helpful and welcome. Tim
I’m accepting the dx a bit more I think. I find it quite bizarre just what range of symptoms people start with before getting their diagnosis. You just wouldn’t imagine going from “less wiggly toes” to MS would you? All I can say is that this forum is an absolute Godsend. None of my family or friends truly understand what you’re going through or have answers to the many questions and I an so busy keeping up the “happy face, it’s not so bad” facade for them that I can’t vent my frustrations. The support and encouragement I’ve received from everyone is greatly appreciated.
Cath, welcome, when I am tired I have a brain full of cotton wool, it helps to have a ‘nice’ image of our problems. My brain does function BUT a little slower, cut yourself some slack it’s a beast of a diagnosis. I also suffer from prickly heat and take certirizine, welcome to our gang I think of us as a ‘motley crew’ BUT usually as the ‘cool’ gangTake care, be safe everything takes it’s own time M
I couldn’t have joined a nicer gang! (my first smiley to get through if this goes, other attempt lost to moderators)
I couldn’t have joined a nicer gang.
Just tried smiley for 2nd time, both posts lost to moderators, so if this post’s repeated that’s why.
Hi Min, we’ve already talked but I wanted to let you know I’d read your intro, now I’ve found it.
Too hot to think of the right words… your diagnosis was really recent too so you know you have my sympathies on that.
Ok, too hot and need to move the laptop away from me now so sending you cyber-hugs, not as toasty as real ones, so pretty good right now
Thanks Sonia It’s a relief having a diagnosis for many reasons. Will be much better when I eventually have all my paper work done - had to re-apply for all sorts but life is generally falling into place now. Thanks for reading post and it’s wonderful getting to know you all. My enter button doesn’t work on my laptop on this website so no paragraphs, any solution? Take care Min x