I was diagnosed with MS at the end of 2020 but before I could get my head around that, the next thing I knew was waking up in intensive care, after being found unconscious with hypothermia, dehydration, no other explanation and no memory of the 2 weeks before I was found. I've been in HealthUnlocked in an ICU survivors community but it is time I got to grips with the MS so I came over the fence to here and it seems like a nice friendly positive atmosphere so I thought I'd give it a go.
I had a badly broken leg back in 2004 which never completely recovered. In 2020 I was finding walking getting worse, and after a stay in hospital and referral to a neurologist and lots of tests, got the diagnosis of PPMS. It's possible I may have had RRMS for years and never noticed, any walking problems I would have attributed to the old injury, or overdoing the gardening, walking or whatever at the weekend.
The trouble now is that the stay in ICU has left me with symptoms including muscle weakness and fatigue which I don't know whether to attribute to MS or PICS (Post Intensive Care Syndrome),and frankly I'm not sure any of the medics do either, though they tend to blame the MS, I guess it's a convenient scapegoat. A broken leg (same leg different place) this January was a major setback. I'm finally back home sitting in a wheelchair, trying to deal with all of that plus a backlog of 18 months of domestic admin paperwork that no-one did while I was in hospitals and care homes, plus all the stress and trauma of that experience. As if a diagnosis of MS on its own isn't hard enough...
Don't know what else to say really, so I'll stop and look at some other posts.
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Kit10
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Welcome! I am so sorry, you have been through a lot these past months😟. Sounds like you'll be having quite a bit of physical therapy which will help determine what is weakness from the time in ICU and broken leg and/or what is from ms and hopefully get you'll be back on your feet in time.
I broke my ankle, needing surgery 4 years before ms diagnosis. I never got my balance back to before the break, but I put it down to the ankle, not knowing it was really ms.
I hope you have someone to help you as you play catch up on paperwork, etc. family or friends? Try not to stress about it too much and remember that we are always here if you need to talk or vent or just need a laugh. Kenu and jimeka are usually good for a daily laugh, I look forward to their posts 🤗🤗
Oh, my, and yet, despite everything, you were able to come over the fence to see what's on our MS side. Welcome, we're friendly and can relate in many, many ways.
Kit10 It's very possible to have had a "benign" (what my ms neuro calls it) case of ms for years with symptoms that are so mild and last such a short time they tend to be ignored, especially if you have Dr's that don't take them seriously when you do mention them, as was my case. Once I hit spms and symptoms began to appear, stay, and progress all those little issues from the past made sense.
Right. It's a very common story. What I meant is it is hard not to notice RRMS since it has relapses. Sounds like you might have had PPMS, which you were eventually diagnosed with.
I ended up writing and erasing a book 🤣 Nope, I didn't know. I don't expect any teenager in the 90's to have understood what Uthoffs phenomenon was and that they had MS. I'll stop that book right there 🤣 So yes on misdiagnosis and playing exhausting games as the crazy patient. Yes on full recoveries making you believe the ER was right and you just had a weird virus. I have still never had an event with a total loss of function, still RRMS, knock on wood.
Welcome Kit10!!! Roll on over and have a cup of coffee or tea.. look around the place, say Hi! to some people.. and get acquainted.. We are a bunch of helpful people here, with lots of stories to tell about our lives, adjustments we have had to do, recommendations to questions that you might have.. but always remember that MS is different for everyone.. and that we are not Dr.s and always remember that and consult your Dr about anything.. Sometimes we are brash, sometimes funny, but always caring. Remember.. we care about every one..... haha even YOU! So come in the room, and talk or not to us, but feel us out and you will see as I did, that this is the best group there is!!! And I have seen quite a few of them..
Hi Kit10! Wow! You've really had a go with it! I to was diagnosed with PPMS back in 2014. Like you I went through a barrage of testing for about a year and a half, through 3 different hospitals and I can't even tell you how many doctors. I was always a very hard worker before I got sick, my motto was, " if I'm not on the ground, I'm fine." After I was diagnosed, it seemed like EVERYTHING was caused by the MS. The approach I started taking kind of went back to the way I used to be. I stopped taking all the pain meds and anti depressants and just stick to my DMT. If it hurts, I take some Advil. If the pain won't go away, then I'll take a muscle relaxer so I can sleep. That's it!!! I try to live a normal a life as possible and take lots of breaks. I can't walk very well, so I use a cane, and I have a scooter on the way so I can be out with my family more, and most of all, I don't let my MS dictate ANYTHING! Just remember, it's your body that has ms, not your mind. I wish you well with this journey and hope that you can find the support that you need. Have a blessed day!
MS is a very strange disease (?) in that the symptoms vary from pt to pt. I have had MS since 1974 according to the Drs, but was not diagnosed until 2002. I also experience muscle weakness and fatigue. It is strange that a nerve disease can cause these symptoms.
I’m so sorry that you have been through all of these difficulties. But welcome to our group. Here I believe you will find answers, friends, information. I wish you the best and hope you continue to visit here and share often! Kelly
Welcome to our group😊 Glad that you have joined us. You have had a rough time of it and I hope you can look around both Health Unlocked & MSAA. There is so much information available for you & there is almost someone here that can help guide you & be supportive for you. Always feel free to ask questions or respond to others posts. We do have guidelines that you may want to read. They are usually on the right side of your home page.
Thank You all for such a warm welcome, I'm a bit overwhelmed, wasn't expecting quite so many welcomes. I've already had a few laughs from some of the funnies people have posted,I did read the guidelines, I am getting physiotherapy, and maybe one day I will write a book, but right at the moment it's all too raw, and it's likely to come out like something by Kafka. Look forward to further interactions on other threads.
welcome. that is a lot to have to deal with! i'm glad you've made it home. have you considered therapy? i went for a decade, stopped a few years, then after 2 of my cats and my dad died, decided i needed a bit of a 'tune-up.' it helped a lot, if for no other reason than i could say exactly how i felt without worrying about hurting my loved ones' feelings. i also take an antidepressant.
i get that ascribing weird bodily things to other issues. i used to randomly trip, almost fall, for a few years before they found the first spinal lesion. at the time i blamed my shoes😕. i'd also have numb spots on my thigh. at the time i assumed i sat on it wrong, but now it's permanently numb. i think a lot of us do that.
Have I considered therapy? Excuse me while I sound off...
🥶😵😱😖🤬💥
After waiting about 17 months for trauma therapy related to the intensive care stay, I have finally got an appointment, though another person from the same organization said he couldn't talk to me about MS he'd have to refer me to someone else for that. It's all mixed up together in my body and in my mind so how he thought I could separate them I don't know. I have lost count of the number of times I have been assessed and referred on to someone else, including one lot who said my needs were too serious and too urgent for them to help me. That was a few months ago. And the group who would have seen me the same day except that I was already on someone else's 18 month waiting list. I have been in 5 different hospitals and 2 care homes in 18 months, and every time I moved I was in a different area and had to go back to square one. And some people won't start while you are in hospital and tell you to wait until you get home, despite the fact that the longer you stay in a hospital the more traumatised you get. Britain's National Health Service may be the envy of the world, but if everyone who spent their lives assessing and signposting actually did something to help, it could be even better. If I hadn't needed therapy before all that I certainly would now.
🤐
Rant over. (phew!!!)
Maybe the person I'm seeing in a couple of weeks will be helpful.
lol @ the sound off; i hear you. regarding separating... that's completely nuts. i don't know where he got that idea. you're right; you're a whole person affected by multiple things. it can't be picked over and separated. idiot.
it was 'too urgent' so they passed on helping you?!?🤬 that's irresponsible, at best.
i mean if you found someone sooner, why would you WANT to wait 18 months? these people are ridiculous!!! and they are mental health specialists? perhaps they need to see someone. smh
fingers crossed for the next appointment. they are putting you through it.
The more I read here and on the ICUSteps forum the more I find the the symptoms of MS and Post Intensive Care Syndrome (PICS) overlap, The following can be either:
fatigue
muscle weakness
double vision
dizziness
brain fog
depression
bladder/bowel problems
swallowing problems
speech problems
other people not understanding your experiences
poor sleep
There may be more...
and that's not counting the symptoms of whatever put people in intensive care in the first place, that's just the impact of being lain in bed on a ventilator, and everything that goes with it.
As far as I can work out, muscle spasms and ? heat sensitivity (or could that be menopause?) are MS, hallucinations/weird dreams from sedative drugs and the ptsd that results from that are PICS, anything else could be either or both, or something else again. No wonder MS is difficult to diagnose.
Welcome to the forum, Kit10 ! If you want to look for more ‘ms’ info, go to mymsaa.org I look forward to hearing more from you. In the meantime, keep smiling!
welcome ...i hope you get some help ...it is an adjustment to living with MS..so different for everyone but i hope you find someone to help you with it ...the MS society is a great place to start for they can get you in contact with different organizations......good luck and life doesn't stop because of it ....we all have different issues and ages and women and men ...so just ask and i bet some one can help or know who to talk to ...get a doctor that specialises in MS ...love and happiness in this great life ...
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