Hey I’m new here, I’ve had MS diagnosed for 5 years but had it longer, I wanted to know, if any one during this time we face, has had any kind of relaps and your neurological team has said its best to not go in and have the strong steroids etc as it will surprise the immune system! So My partner/Carer is doing physio at home, I have morphine and gabapentin, and if so how are you coping?
Also, I was wondering if any has these weird (I call sensations) like you have pins and needles really bad in the below knee area to foot and when you stand on it it feels so painful, and it kinda feels numb but pins and needles sort of and when I stand on that leg it feels so weird it’s hard to explain,
I have not used this site before and hope everyone is well, and coping as best you can but if you experience this type of feeling, also it feels cold to touch as if the circulation isn’t there, but if you get this sensation how long does it last, it’s only in one leg and I’m about ten days in with it, it’s got a cold sort of feeling and keeps getting cramp to in my toes.
I know your all busy and taking care of each other and yourselfs but if anyone has this feeling could you maybe give a bit of advice to kinda comfort me! But truthfully, also to mention it feels like something is tied round my calf bit to sometimes!
hope someone can offer some advise or help, as I say I’m new here, I’m normally one to get on with it, but it’s slightly worring, I’m linking it to a bite I had, the bite didn’t go red it was normal and disappeared or I’m just being really paranoid right now!
I appreciate in advance any help xx any advice xx sorry to be a bother
I don’t think you are being paranoid, just coping with yet another new sensation. It is completely normal to be scared of these unknowns. I have had a number of very scary times. The majority of mine have been filed under “todays new normal” as they have come and mostly gone over the years. You are now the expert of how you feel so you need to observe and listen to yourself so that you can work out what are the big issues might be. Try to reduce your speculation and dedicate your resources to what is happening and how you actually feel now. There are medications and breathing techniques to help with things like cramp but I have never found anything much to reduce numbness or pins and needles. Sorry if this is not much help. My latest recurring symptom is a feeling like a battery on one side of my tongue, after a few hours it grinds me down and means I can not function at my best.
I really hope that you find some relief and that you know you are not alone in trying to deal with this stuff.
All the best
Hi the problem with new sensations is we panic and worry about them so they are always there. You can be best assured honestly that all these are usually down to paraesthesia. (cor blige i spelt it right lol).
Abnormal sensations. its perfectly normal in MS and comes in many many forms. (I know you will google that now lol).
I gave up worrying about all the odd things i got after having my first symptom in 2000 ignored as anything by GP.
If i listed every single thing i have had which scared the pants off me, it would take me a week lol.
MS is weird no doubt about it. A snowflake disease everyone gets it differently.
My PPMS is in overdrive at the moment because of all this covid disease news, so i have limited my consumption and watching way more stuff on netflix and amazon lol. comedy is good.
it is scary but you dont want steroids unless its really troublesome. I have never had them, am on no meds for MS, i use my mind to cope with it all. I have learnt techniques to switch the pain off well not completely that would be impossible. but i have also learnt what triggers them and what makes them happy lol.
sorry a lot of lols in that. must be the shock of actually typing that big word correctly or it goes to show you how many times i have answered people with the same worries, so you quite normal hun.
stay safe. x
I am same as you CC i refuse steroids even in severe relapses i always waited it out.I hate drugs and what they can do to the body so avoid them as much as possible.I have had MS 28 year now and the way i deal with it is not for everyone but has worked for me.
Thankyou for taking the time to read mine I appreciate that very much x
and I’ve took aboard what you have said
ps if I can help with anything with you I am too here xx just working out this group as only just joined xx
Again to another, thankyou for reading my message and the dance of comfort from yourself and a couple others is really nice xx I hope your feeling well in this sad time, and making it positive
zoe. Xx ps I’m here if I can help too xxx
Thankyou for taking time to read and your very right I’m going to google that word as have no idea what that means xx but your aspect and outlook and how you cope sounds wow!
Thankyou for that as I said to above people I’m new here but if any needs help I’m right here xx
I would be interested to hear how you deal with it! I have had many a relaps and been in for steroids etc! I have a lot of autoimmune conditions as well as epilepsy I do try stay away from drugs but at minute I’m totally using my morphine and doset box as I’m worried of the feeling, my skin feels tight it not nice lots of weirdness like a tight sock like someone is rubbing it, all kinda weird xx
please if you want to share I love (I forget words a lot)
holistic views that’s it
anyway kind re
ps I’m here to after three responses I don’t feel so alone xxx
Thankyou everyone , wow three or four responses I forgot now unless I look, I get very forgetful,
I do appreciate it, and if anyone wants any help or someone to listen I’m here, I’m new here but I’m here ! Xxxx