Two doctors have been out to see mum today, the first her GP. He found her blood pressure a little low and has advised staff to take her off 2 medications for HIGH blood pressure. He listened to her chest and mentioned mucus? He couldn't explain the fever, her nighty was drenched! And off her went.
When my husband visited her tonight he said she looked awful, mum was still feverish and complaining of headache and she said she felt dreadful. Husband noticed she seemed to have laboured breathing. Night doctor was called back in around 10 pm and said all her obs were fine including chest, and off her went !!
This has happened on several occasions now, feverish to the point that her clothes are soaking. Sometimes she complains of headache and feeling sick. Once also had chest pain, on this occasion she was admitted to hospital and was treated as possible heart attack, by the morning this was ruled out.
Has anyone had experience of this? Infections have been ruled out also. I have no idea how to proceed, hurts my heart to see her this way with no medical answers !!!
Any advice would be appreciated.
Thank you my lovelies
Jo xxx
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Forgot to mention the evening the fever started this time mums body became very stiff by the morning it was gone. Mum takes Co-Codamol 2 tablets 4 times a day, doesn't stop the heat pumping out of her at all.
hi jo jo well mate i cant answer your question about your mum but about 2 months ago i woke up sweating i had no fever or anything i thought i had to many covers over me at night but my wife had the same amount of covers over her \\ so i never went to the drs \\ after two day it just went as if nothing had happened at all i do not take any medecation for psp sorry i could not help you
any further jo\\\\\i hope your mums is like mine and just goes away i never thought no more about it until i saw your em \\ i hope your mum gets better soon peter jones queensland australia \\\\ indeed to goodness\\\\
Hey hey my lovely, Thanks for the reply sweetie. I did reply to you yesterday but again it's disappeared!!!!
I went to visit mum last night, she's not hot anymore but still feels unwell. I will feel much better when she has seen neurologist. I haven't seen her for a few weeks as I've had horrible chest infection and I can see such a decline in her overall. She's lost more weight I think too. She's already refused the Peg. I will keep a close eye on her over next few days although its a bloomin Bank Holiday here Monday, nightmare trying to get a doc out !!!
How are you doing? Are you still having a weekly visit from you're harem ladies? Take Care, lots of love JoJo xxxxx
hi jo im sorry to hear that your mum is no better mate its a problem isnt it i wish that somebody would give us all a straight answer so we would know which way to go
or what to do i think half the time you have to go with your gut feeling \\ i go to my nuero once every 6 months which i think i am lucky really even though he does not say what is going to happen to me \\ i just walk in or hobble in i should say and says to me your looking good whats been happening and i tell him and he says thats part and parcel of psp checks my eyes with hes famous pencil and walk here and there and then its see you in 6 months your doing very well \\\ talking about trying to get a dr out directly someone shouts the SURF 'S UP your lucky to find anyone over here i ve worked with people who would take there sick days when the surf was up and take the days off anyway regardless of the surf but thats another story \\ well jo jo i hope your mum gets to come good soon mate i will be thinking of her take care peter jones queensland australia psp sufferer
At one stage I did the merry go round with my husband with his chest restricted sound, breathing difficulties and lack of body temperature control. It started about three - four years ago. Followed up with GP, speech, OT, neurologist even dermatologist.
All were concerned on how his blood pressure was high, now is low, seemed to be an obstruction but tests did not confirm, how his skin was shedding , how his heart may not be working properly, medication side effects etc.. the list went on and on.
I was worn out - lack of sleep, was washing continuously - clothing and bedding drenched (& John was showering continuously) drs appointments etc. But then John's symptoms would go away for a while then return .. - it was never in a consistent pattern - so we would start the merry go round all over again trying to find out what it was and if anyone else had the same problems.
Til one day (whilst John was in hospital for an overnight check) I read an article in a hospital waiting room on lack of thermoregulatory control with people who have MS, motor neurone and huntington's. So I followed up with a lady who worked at the state govt - finance dept - who adminstered grants for covering additional costs in the home for lack of thermoregulatory control - who was of enormous help - and she gave me back some sanity (its amazing how networks evolve)
- Anyway - In John's case - what were going through was not that uncommon, just not talked about so when I went back to specialists with details of physical consistencies between illnesses. Each did some research on these other diseases. Anyway end result - John received a grant for a new airconditioner (he moved out of the family home last year), gets a pretty comprehensive check every for 3-4 months, has priority testing if req'd to make sure he is going along ok - and he receives a $500 grant each year to cover extra electricity costs in the household.
N.B. John has chosen to sleep with a T shirt and boxer shorts, a satin bottom sheet and no top sheet. He only uses a light weight duvet and the airconditioner is always on (settings are being constantly changed between heating and cooling) and he still gets the sweats.
To receive the grants - John's illness was registered as 'Neurological - other - other' which amused me - perhaps it is an apt description - Suggests to me it is out on a field all of its own...
Thank you for your input. A field of its own is correct!! Apart from mums neurologist, I have only come across one other doctor at A&E who had knowledge of PSP and we've been through A&E dozens of times with falls etc. I now have a printed off info pack from the PSP website to take and hand into ward staff should mum ever have to be admitted explaining how to care for a patient with PSP.
Best Wishes
Jo xxx
Hi Jo
In conjunction with what Alana has mentioned, PSP is now confirmed to affect the autonomic nervous system (heart rate, blood pressure, digestive tract movement, sweating, temperature regulation, breathing). This may account for your mum's symptoms. It's possible she feels hot and sweats but the tests do not show a true fever (constant high temp, raised white cell count etc). It may also account for her breathing difficulties (I assume the doctors would know she has PSP and this dysautonomia is one of the many symptoms - ask them next time you see them).
My wife has PSP and has times when she sweats and feels very hot. She sometimes has problems with breathing. She now has heart arrhythmias. She has low BP normally but it can occasionally rise.
So these symptoms are not always consistent (like so many things with PSP !).
I'm not happy with the doctor who mentioned "mucus" - what did he mean? As you know, aspiration pneumonia is common in PSP sufferers, and although her "obs" may not have indicated this (especially since she's had these problems for some time) the symptoms are obviously fever and symptoms similar to those of your mum - so constant vigilance is required.
It's so difficult to see our loved ones with these things - and it seems the doctors need to do a bit more extensive reading about PSP/CBD/MSA and similar.
I have spoken with the GP this afternoon about the mucus, he said he'd told the staff her chest was clear and there was NO mucus, Chinese whispers going on. The GP has no experience of PSP so we both agreed an urgent referral is needed for mum to see her neurologist who she normally sees once a year, next scheduled appointment won't be until November time so hopefully we might get appointment within a month. If not ill pay for a private consultation.
Thank you for replying my lovely, I hope you and your wife are doing ok.
My husband has had PSP for at least 9 years. Especialy in the last 5 years, he has experienced profuse sweating all year round. He wakes up some mornings (in the Nursing Home) completely drenched in sweat. They have to change everything even the pillow as you can ring it out with moisture. He has an electric fan constantly on in his room for better air circulation-----this has helped. The doctor explained that the autonomis nervous system is out of wack with PSP. As of late this condition has eased somewhat but with the summer months coming in Canada we'll see what happens.
How about a UTI infection going on? Just a thought.
Jimbo
Hi Yes mum had this at the end of middle stage. It was almost every day and on those days she was less communicative so couldn't tell us what was wrong, we had to use the process of elimination , yes or blink or slight turn of the head. We put her onto Prophylactic antibiotics and pain relief patches and it seemed to help. She went into end stage soon after this but there were times when she was clearly hotter than normal -she was a cold mortal throughout life so it never seemed right when she was so hot. The nurses would say she was not running a temperature they would be concerned about although it was higher than normal for mum. Evenings used to seem the main time and she would seem a little dopey with it but only ever complained about hip and shoulder pain from laying about so much.
At least you know this does happen but as others have advised it is still always a good idea to rule out UTIs.
Thank you all for replying, hopefully the referral for mum to see her neurologist comes back quickly, ill post up again with his thoughts. You guys rock xxxx
My husband has bouts of shaking and going really ridged, sweating and the look on his face is one of absolute terror. Sometimes he stands up and holds onto the table or whatever for grim death, his knuckles going white with the strength of his grip.
It seems to coincide with needing to go to the toilet (poo) he has to be taken about 20 times before he is able to finally go.
He is being investigated at the moment for an enlarged prostate and as he is retaining urine his bladder is in a mess .
The doctors want to give him a general anesthetic to clean out his bladder and reduce the size of the prostate but I'm not sure the anesthetic is in his interest considering his general health.
We're seeing them 10th June so will give you an update, tell me if any of you have experienced any of these symptoms.
Hey Joey, sorry to hear your husband is having a rough time of it just now. Mums trunk has become more rigid over the last 12 months, it was getting difficult to get mum from standing position to sitting as she didn't seem to bend in the middle. Most of her transfers now from wheelchair to bed or chair as helped with with the use of a hoist as mum can no longer stand. Monday evening when she was very hot and feverish we were told by the home that the whole of mums body was rigid and she was very hard to move about the bed. I asked mum about this yesterday, did it hurt etc? She said she was asleep ( and a little out of it with high fever symptoms) and wasn't aware her body was rigid. I will be aski
Opps!! I will be asking neurologist about muscle relaxants, as I won't have mum in any pain and I don't want her to be frightened. Our GP is reluctant to prescribe any meds at all in relation to PSP, I think due to the lack of knowledge regarding this condition.
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Take Care, lots of love JoJo xxxxx
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