Have others experienced sudden worsening of symptoms without an apparent cause? My husband's decline has been slow but this morning all symptoms were much worse (blood pressure over 200 even when he was sitting up in bed, difficulty walking to the toilet, couldn't get urine to flow, shaky, confused and breathless. I took him to the ER and nothing was found to explain the escalation in symptoms - no UTI or other infection, no major heart abnormalities, etc. His blood pressure remained high in the ER and one reading was 245/196 but after an IV of saline solution and a lot of sitting his BP settled in at 150/90 and they released him.
Is this the way it happens? Are we missing something? Will he regain some function or is this the new normal? He is moving about better since we returned home. I'm confused but don't want to panic if this is the "normal" course of progression.
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Ruffner
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I’m so sorry you’re having a difficult time, I’m afraid this is quite normal from our experience. Sometimes mum regained a little back after a decline but this did get less and less as things progressed. We did make sure we had constant reviews of the medications, especially around the Parkinson’s meds as with MSA these can have lessening benefits and the side effects can become an issue so we’d look at dosage and timings. Same with BP meds if BP starts to get very high, as most are given to prevent low BP.
One thing to remember if that infections can be ‘silent’ with MSA they may not even show in tests so sometimes treating something that might be a UTI with antibiotics may work.
Everyone can be very different though which does make it so difficult.
Your doctor will advise further but Jackie had very high blood pressure followed by bouts of low BP on standing (the usual postural hypertension thing). She was fainting a number of times each week.
After much discussion she was placed on medication to lower her high BP and the fainting stopped! My layman’s view is it was the massive change from high to low that was causing the issue. Treat the high BP and the fall in BP is less.
Sadly we find with MSA a degree of experimentation is needed as there’s no one size fits all.
My husband's symptoms vary from one day to the next, and he has periods where his symptoms plummet for a couple of days and he becomes very confused. When he recovers, he's back to where he was before, with a steady decline and moderate changes in symptoms from day to day.
I don't think there is a normal course of progression, it's more a question of learning what happens in each individual case and responding accordingly.
make sure they have done a "proper" test for UTI and are not relying on temperature which may not be a good indication in MSA. I never had to deal with this but if they have a silent uti they still need antibiotics.
Thank you all for the thoughtful comments. The blood pressure management does seem to be the biggest challenge we face now. He doesn't take medication for PD symptoms and Midodrine made the high readings worse so we took him off. I'll ask his neurologist about the suggestion of treating the high BP to reduce the degree of BP fall when he stands up. I wasn't aware that UTI and other infections can be "silent" so thank you for that info. They sent his urine for culture and we haven't received those results but the quick test they did at the hospital didn't show infection. This is difficult. I am so thankful for this forum - the information and support is invaluable.
MSA doesn't deteriorate rapidly, it changes over months and years. If there is a sudden change (worsening of any of the MSA symptoms) then something else is causing this. The most likely casue is an infection -either urine or chest. You should seek help from a GP as antibiotics will be needed each time. NB someone with MSA may not show normal signs of infection i.e a high temperature due to their autonomic dysfunction (their temperature regulator doesn't work normally).
Other possible causes are dehydration, constipation, stress, a fall or hospital admission, or a recent change in medication that doesn't suit them.
Yes, constipation is a common symptom of MSA. The whole of the gastrointestinal tract is more sluggish in MSA and even with a well balanced diet and lots of fluids, most people will require a daily laxative to keep the bowels moving. Ideally people should have a bowel action daily- constipation makes you feel uncomfortable, lethargic, can lead to confusion and also means your medications can't work effectively. In severe cases the bowel can become blocked which can be a medical emergency.
Thank you Samantha. We think it was dehydration. He drinks a 12 oz glass of water upon waking but apparently that wasn't enough. He did have a fall 4 days earlier but seemed to be recovering. He is now back to his "normal" state but more skittish about moving around the house. He also suffers from anxiety and when anything goes wrong (like not being able to urinate) his symptoms escalate.
I don't know I'm afraid but I'm comforted by the thought that someone else is having similar problems to me. I posted coz I suddenly can't recognise numbers or write them down.. my husband is in hospital and one of the nurses got the number of his phone but she had to dictate it to me loads of times before iI got it down right. Has its funny side ttho ...I was ringing a friend whose dialling code contains a 3 and a voice interrupted to ask 'do you need us?' Ah what, doubt it, who the he'll are you anyway I asked. 'We're the emergency services number'. Ah gawd
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