Hi, all, I'm needing some input. Two days ago my mom with psp, suddenly started chilling and had a fever of 103' gave her Tylenol but that didn't bring her fever down at all!! Two hours later she was so weak , would softly answer me but also seemed a little incoherent, couldn't hardly sit up or hold her head up. She had a uti just a couple weeks ago and had just came off her antibiotics, had kinda the same symptoms then but not as high of a fever, this was worse, I feared possibly aspiration pneumonia, because although she drinks thickened liquids and soft foods, she coughs while eating and drinking. So this scared me..so I took her to the emergency room, ( which was our first trip ever ) they did chest X-rays blood work urinalysis, about 30 min after we arrived at the hospital her fever went away..and she was back to her ( normal ) self, all the test results came back fine!! I couldn't believe it... not that I wanted her to have an infection or any other thing going on, but I just could not believe how sick she was just a few hour prior, and now all fine. What the heck was that all about? Just wondering if anyone else has experienced anything like that, sure was strange.
Appreciate any input
Love Alli
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I'm currently dealing with the same issues with my Mum who has CBD. Temperature shoots up and she is very ill and vomits and then disappears again. The last few months test results been normal so no one knows what is going on.
If you search past posts about temperature it had been known for other patients to have this happen too.
Mum has had this going on a few months now and loads of different antibiotics tried in case of infections.
Oh,no I hate to hear that. It's frustrating I know! I did think of something like that, but I also wasn't sure if they actually just felt hot or if they actually had a temp when checked
I think bit of both. Mum doesn't seem to know when she has a temperature but becomes very clammy and cannot regulate body temperature so always checking if she is too hot or col by taking her temperature and seeing how she feels to touch. She does feel cold though very badly.
I've been looking for a post that really explained it well but can't remember who posted it a while ago. Will keep looking.
I am a newbie here my husband is in early stages of psp. However, I have been diligently reading all the post. I did come across something here or elsewhere that part of psp is that the body can stop regulating its temperature. Maybe that is what is happening?
Daffodil48 Has mentioned reading about this before. If you put Neurological blip in the search PSP Association box top right, you will see my reply to Seizures, the first post there. It happened very often with my husband and the doctor called them neurological blips, probably caused by being unable to regulate his temperature like a baby can’t. That part of the brain not developed in babies was affected by the PSP. If infection was ruled out, maybe this was what happed to your mom.
Wow.. ok I read your seizure post...I'm sure know that's what it was. But like I said I have been expecting the dreaded pneumonia to happen at anytime know, so I wanted to be on top of it as soon possible. But I will know next time that it could be just another hurdle for us to jump over.. thank you so much for everything!!
Interestingly, my CBD hubby cannot seem to sense temperature, or regulate temperature either. In the middle of the coldest winter night (say -3 C for us) he kicks off the lightest cover and will only wear short-sleeve t-shirts during the day. He was never like this in his earlier years. Yet when I test him w a thermometer he does not have any fever....
Oh that must be miserable, but I'm still confused, do you happen to know if when their body temp is misfunctioning does that just make them feel hot and sweat or does it actually show when their temperature is taken? I apologize for the questions I've been trying to read up on this but I keep getting disrupted..if you know what I mean, but it's all alright
My guy had a few very similar episodes, feverish and almost stunned, leaving him weak, but basically recovered in a couple of hours. After the first time, I stopped fretting and waited it out. Other folks reported similar events. Try not to worry. That is my oh so helpful advice. Peace, ec
I appreciate your info so much, I had just told myself the same thing..next time I will know! I am so grateful for everyone on this sight, I don't know what I would do with out you all!! I sure can't get any good information or advice from any doctor!!
So far hubby has always shown a "normal" temperature: yet he says he is hot and asks to dress lightly and kicks off covers (I've gone through quite a lot of options in bed coverings trying to make it work for both of us, lol!)
It just seems to be one of the weird "life isn't normal" symptoms of PSP/CBD!!
Not sure this will help but a seemingly high temperature was one of my husbands first symptoms 7 years ago. His body would be cold to touch but his cheeks would have a high colour and the sweat would drench his clothes. This would often be triggered by being outside on a cold day. However, on checking his temperature it would more often than not be slightly below normal, occasionally just above normal. During these episodes he would become a little confused and often completely spaced out - I could wave my hand in front of his face with no response from him. 7 years on these episodes continue except the confusion is here to stay. The sweats often necessitate a change of clothes, he can sweat through 3 layers. Neurologist aware - just reiterates no temperature control a symptom of the illness. We used to joke that he must be going through the male menopause - little did we know then what was ahead of us. So for my husband, lack of temperature control was a first symptom along with forgetting where he was going with a sentence. No falls as yet but a few wobbles, and he can still eat and drink with no choking but that will come without a doubt I am sure. Cognitively he is wrecked, which makes life hard but certainly no harder than the rest of the folks on this site are experiencing, it's just that the journey takes us along different routes. You did the right thing checking things out at the hospital - if in doubt always best to run things by the medical people. Best wishes, HilsandR
Oh thanks, this does help!! Sorry to hear about your husband , best of luck to both of you!! It does seem like they all have very similar symptoms, but not always in the same order.. I hate this disease for everyone involved!!
Hi, Marg from Howlong N.S.W. Australia, my hubby Leon is now in care, 8 years on into P.S.P, he has constant sweats, his body is hot as heck, hands cold, one foot cold, spikes in temp regularly, he can no longer communicate,(except via an alphabet board,eat,drink,continually thinks he needs to go to the toilet, gets frustrated, (understandably) emotional constantly now,shocking sleep patterns, it is such a horrid illness, I am just watching him slowly fade away, he said yesterday, "I am not ready to go yet"?? heartbreaking, I go to sleep wishing he would just go to sleep and drift off to a better place. Thinking of you
Thanks Jean - Your timing was spot on. I was just emailing an update to her three sisters... damned tears!
But a lot of good news there too. Friends visiting her and tales of a new "Rare Neurological Disease Co-ordinator" in our local neurology team. She is super available and comes with a magic wand! She sorted all my medication concerns in a morning. She just got on the phone to doctors and - Job done. I could hug her!
I think of you and Chris. I don't know what to say, but you are in our hearts. Yes, Liz keeps up with forum news and remembers you fondly.
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