I posted a hello a while ago, here’s a longer one. I was diagnosed with PPMS just before Xmas. The big complication is I have spent most of this year in hospital having nearly died of hypothermia, and with no memory of the three weeks before I was found cold on the floor., and only very hazy ones of the week after. What part the MS may have played in that, nobody knows, and how much of my current problems are MS and how much the effects of a stay in Intensive Care, nobody knows. How much of any of it is due to an old leg injury is also uncertain. Nor do I really know how long the MS has been going on for because any walking difficulties I’ve had in the last 17 years would have been blamed on the injury. Even before that I could have had a relapse and blamed it on having overdone the gardening at the weekend.
I have read a stack of leaflets about MS, and have just got a copy of “Multiple Sclerosis for Dummies” and started reading it, but I am still at the shocked and bewildered stage, besides having mostly been thinking about tracheostomies and ventilators. Augh!
I doubt if anyone has experienced that combination of problems but at least I may earn points for novelty value.
Oh blimey Kit, you definitely get points for novelty!!
What a hell of a time you’ve had. As if a PPMS diagnosis wasn’t enough, you’ve beaten all with your recent mysterious hospitalisation.
As far as finding out about MS, I think one of the best places to look is the MS Trust. They have tons of webpages covering all aspects of MS. Just try googling a search term (try something like ‘pain’) and MS Trust, there are lots of different pages. Or have a look at Primary progressive MS | MS Trust Or of course have a look at the MS Society home page (see the link at the top of this page). Then see the section marked ‘About MS’.
MS is a difficult illness to wrap your head around to start with. One problem is that we all present a bit differently. It’s been called a ‘snowflake’ disease because we are all so different. There are symptoms that are common to many of us (spasms, stiffness, bladder and bowel issues, pain, tremor, the list is endless!) but no two people will have exactly the same group of symptoms.
Given that it’s something for which there is no cure (damn it!), you have time to get to know what your particular MS will be like.
I do hope you recover from your recent illness quickly. Let us know if there’s anything specific you need to know. Someone here is bound to have experienced something similar!
Sue
This is me in hospital in 2015 i have no memory of going there or what happened prior to going there. I kind of just woke up to all this fuss and being in ahospital bed with my daughter by my side.
I have had this before, they determined in the end it was transient epileptic amesia, or transient global amnesia. its like ground hog day. I make no memories when having an attack. its like my brain switches off, but i talk to people. they are never sure what triggered the attacks i have had. not sure if its similar but waking up vague is a horrible feeling so I match my TEA, for your hypothermia lol. xxxxx
Flippin’ heck, this amnesia issue is a new one on me , and another pain in the butt. I hope that it is an infrequent problem.
M
it was so scary I had a lot more events at the beginning, we think some of it might be triggered by stress not sure, i take a med for it. Must admit i do have memory issues a bit and time and space lol. xxx
Hello, my name’s Jan, Im 68 and I’ve never joined any kind of forum until now. I was diagnosed in 2006 and for most of the time since, the MS has been called benign, now it’s secondary progressive or sometimes just progressive. Not sure if there’s any difference. My symptoms have become a lot worse during the last 19 months. My ms nurse suggested it might have been triggered by a very stressful event in mid 2019 and a serious health scare at the end of that year. I’ve had a fast deterioration and developed truly awful symptoms. Pain that I can’t seem to get under control, spasm’s that seem to get worse each night, for instance, I struggle to turn over because that triggers a spasm in both legs that are painful and frightening. When I move my arms that also triggers spasm’s in my legs. My walking has deteriorated sharply along with my balance and I feel unsafe going out on my own. I’ve fallen a few times and so embarrassed at the indignity of it when trying to get up. I’m being very stubborn about using a walking frame or something like that, which is completely silly I know. I’ve noticed my cognitive skills have been affected over the last few months too and often struggle to write by hand or remember what I was going to say anyway. I struggle to follow instructions, even simple recipes for example. Fatigue has become hideous too it’s a real battle to even get up in the mornings although at the same time I praise my own determination and motivation. I always said I’ll teach this disease to live with me not me with it. Now I feel it’s creeping up on me and some days I find it impossible to think about anything else and struggle to find distraction. So frustrating to say the least.
Anyway, I’ve said enough I think, had my rant but I feel sure that this is going to make me feel better that I’ve finally talked to someone. Thank you to anyone who’s read this.
Jan
Hello Jan
Welcome to the forum. It sounds as though your MS is making up for lost time! As if having been pretty quiescent for quite a long time, it’s punishing you now.
MS tends to fall mainly into two groups. The most common type is the relapsing remitting kind (RRMS), although yours has been called ‘benign’, it has most likely been part of this type since you now have secondary progressive MS. This is what does happen to many of us with the RR kind. (Sometimes it turns into relapsing progressive - this is what I have, it’s less common than SPMS.)
The other kind of MS is Primary Progressive (or PPMS). Only about 15% of MSers have this type. It’s characterised by never having any periods of remission. Right from the beginning, symptoms appear and damage done to the nerves never remits. Progression is sometimes slow, but often takes a rapid course right from the outset.
What happens with secondary progressive MS is that damage done to the nervous system no longer gets better. So your symptoms are likely to be fairly ongoing. It’s impossible to predict the course of your disease. MS is like that, different for us all.
You could speak to your MS nurse and/or neurologist about drugs to help with pain and spasms. There are drugs that can make a massive difference to your life. For example, baclofen is a great drug for spasms. It really does work to make spasms better, even to disappear. You have to start on a low dose to make sure it doesn’t make your muscles too weak, but honestly it’s worth a go.
Equally, you might find that referral to a physiotherapist helps with pain and spasms.
Fatigue is another matter though. Many of us suffer terribly with fatigue. You’ve probably discovered for yourself now that fighting fatigue and trying to just ‘push through’ it doesn’t work. It’s a matter of learning to pace yourself, rest well and manage your fatigue in a sensible way. Have a look at Fatigue | MS Trust
Cognitive problems are also very common. I forget things all the time. I can’t follow TV series’ any more because I just don’t recall what happened the day before, let alone the week before. I can’t remember the plot of most books I read either. But so long as I use a calendar, diary, make notes of what I need to remember, and do my best to keep my brain alive, I manage. Think about what you might be able to use to make cognitive trouble a bit easier to handle.
It’s fairly common to decide that MS will not be your boss, you’ll manage to take control of it. But, that isn’t always possible, or even always sensible. Just as age makes us slow down, MS will force you to accommodate it. Trying to ignore it won’t help. (More’s the pity!) Using an aid to help you remain upright and as fit & independent doesn’t make you weak. Often biting the bullet, using a walker or crutches helps you to remain in charge or it.
Hopefully you’ll get your head around various ways in which you can handle the different symptoms you currently live with. That way, you remain in charge of your life and your body.
Sue
lovely reply i agree with all of that. i am having a bad MS day today tinnitis is off the scale and pins and needles are driving me nuts. i even checked my urine to make sure i dont have a water infection lol.
I agree about aids. without my rollator i would never be able to walk and stay a bit upright for me its just a means to an end. If i broke my leg i would use a crutch.
doesnt make us weak it makes us stronger.
i am like you i can re watch series, as i just dont remember what happens in them.
I had a guy come to see me monday to check my new recliner and i could have sworn it was 2 weeks ago lol. i have no perception of time and space anymore.
Pain sucks especially when its imaginary lol. xxx @JanRosam sounds like your MS has woken up and is making up for lost time. I agree with sue you should talk to your MS team sounds as though you could do with some meds to calm the pain and spasms down.x
Jan, I can’t add to what Sue and CC have said, but please consider using walking aids. Yes, it’s embarrassing at first, because you think everyone’s looking at you, but the aids really help so much!
I can walk so much easier and faster with a walking stick than I can without, and it keeps me from losing my balance. I’m looking into getting a rollator, because while I don’t need one right now, I know I’ll need one soon. They make such a variety of them that you should be able to find an affordable one that suits your lifestyle.