"Never seen before in our lifetime" they just said on ITV.
I DON'T THINK SO !!
Anyway I've spent about 2 years of my life holidaying in Spain and lost count of the number of times the car thermometer said 40-something for the outside air temperature. And if you like it hot try working in a steel rolling mill or a UHT canning and shrink wrap plant like I have.
To be honest if you have spent over 35 years on this planet and still don't know how to cope with it being hot I really despair. Yes, you do have to be more careful if you are "senior" or have MSA but this is not rocket science.
Today's welcome surprise was finding that my slice of Arctic Roll did not have to be left for 15 minutes before I could eat it, by the time I got the dish to the lounge it was nice and soft So that's one more thing crossed off my nostalgia themed bucket list. Does anyone know of a pub where I can get "Chicken in a basket" ?
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ReverendBadger
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my mum has advanced MSA and we have some extremely scary times in the past even just after her diagnosis when it's got warmer. Her brain this week has really struggled to deal with anything other than the temperatures. This is extreme for this country I'm afraid and for vulnerable people dangerous. It will also affect your BP. I'm afraid your post saddened me as it's been a very difficult week for a lot of us.
OK but don't be saddened. We all have MSA differently so maybe I'm lucky enough not to have temperature dysregulation problems with the severity of others. Maybe that luck won't last.
I've got an electronic clinical thermometer so I can monitor my temperature and check it's within the normal range for me irrespective of whether I feel too hot or too cold. Also I apply the same procedures as I have always done; if I feel cold I do something to warm up and vica versa. This seems to still work perfectly well despite my MSA and requires only an adjustment in room temperature of 3 degrees C maximum up or down as required.
Keeping an eye on this as the disease progresses sounds like a good idea. Like many of the other symptoms it wouldn't surprise me if it changed. As I said to my Neuro-Physio today I feel like I'm on an interesting journey for my retirement albeit somewhat shorter than I would have booked for myself given the choice.( And with a different destination!).
there are two main problems with temperature control in MSA
one is the response to infection. You may have an infection without a temperature or temperature without an infection. if you have a doctor who does not know this you may find your self in hospital being given anti biotics, your temp drops and you are discharged and because you still have the infection it rapidly spreads and you are likely to be dead within couple of days.You need to be aware of this and if you find yourself in this position you will need to convince your medic of the need to rely on blood tests Believe me, some of them take lot of convincing and you will need to have established yourself as a patient or carer who is to be taken seriously
the second problem isthat you may not be able to feel too hot or too cold. I once took my husband into hospital with a dangerously high temperature and he was not able to tell there was anything wrong.
I hope you manage your MSA journey with no temperature problems, as you say people are all different
Yes, I identified the seriousness of the infection issue early after reading about it on the MSAT site and warned the wife including the risk of a missed infection possibly resulting in sepsis,organ failure and death.
I knew about this general (not MSA) scenario years ago when a work colleague lost his wife as although she felt quite poorly she struggled on because they were moving house. Two days later she was in hospital but it was too late, multiple organ failure.
Tragic, with 2 young kiddies too. That was food poisoning.
My MSA knowledge got put into practice only 4 weeks ago as I ended up in A&E with retention(unable to pee) and lost count of the number of nurses I had to educate when they shoved a themometer in my mouth. The admission nurse had never heard of MSA so I got her to write "MULTIPLE SYSTEM ATROPHY" in letters an inch high on the admissions sheet. Having said that the registrar who saw me knew her stuff and knew about MSA and this issue They wouldn't let me leave the hospital until the lab had done the blood test for infections. Didn't get home till 9:30 pm, mind you I had a 20 mile "taxi" ride home in the back of an ambulance and a free teaspoon as I was still eating my hospital provided lemon mousse when they called me to the "taxi".
BTW I have NOT stolen the teaspoon and will return it to the hospital when I have an MRI scan on Monday at, can you believe it, 6pm !! As teaspoons go it's rather thin and lightweight anyway ,no doubt due to government cut-backs in NHS funding.
My story continues as I write this as I now do have an infection and am sitting here on antibiotics , which unfortunately started 36 hours late because the first antibiotic they gave me produced a rare neurological side effect after just 1 tab so had to be discontinued.
All this and I'm still less than 2 months from MSA dx. What will August have for me ?
[rolls dice]
Faites vos jeux.
You are right to draw attention to this and the details about doctors ,etc as the seriousness of this MSA-Infection-Temperature issue cannot be overstated.
Yoou are learning fast.....well done with the bood test. Bladder malfunction in MA comes in two sorts..incontinee which somes with embarrassing we pants and plays havoc with your friends sofas and retention which make you prone to UTI. Since urine retained in the bladder is a good breeding ground ofr bacteria you need to do all you can to keep it washed though HYDRATION HYDRATIO N
this is not a site for climate change deniers but for people with MSA. whose temperature control is not functioning. who are not just, like me, vulnerable because of age but are at great risk beause of MSA. Being upbeat is marvellous but you need to know where the boundaries are and what you can safely ignore
The problem with badgers is that they tend to dig tunnels under the boundaries and pop up on the other side. Luckily the badger deniers have been authorised by the government shoot the pesky things. Trouble is they can never find all of them. I expect they hide on forum sites where they really shouldn't be and talk about "other things" which is of course a serious offense. Especially if they express an opinion which someone, OH HORROR OF HORRORS, disagrees with.
BTW there's a renowned funny meme about Honey Badgers you can find on the WWW but please don't look for it if you are easily offended.
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Writing everything down saved time and ultimately the day!
Next steps: living will, DNR and options
Fatigue/lack of energy
Just want to say Hi.. 
Another beautiful person taken by this horrible condition
