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Hello again from Kit

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