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- 21st March 2019 at 3:47 pm #14982
Hi do all people that have MSA have low blood pressure problems, just a quick question hope someone can answer this question as consultant seem to have different opinions ? regards Chris
22nd March 2019 at 3:17 pm #15017
- This topic was modified 3 months ago by croper.
Hi Chris. I don’t think that all MSA Sufferers have noticeable BP problems. My husband has had patches where it has been a problem but usually when he has had another issue as well like a urine infection. He doesn’t have any BP medication but does have water before he gets up and wears flight socks to keep morning problems at bay. Some people have severe problems! I think it may depend which part of the brain is affected by the disease first.
Hope this helps.
Diane22nd March 2019 at 3:59 pm #15020
Hi Diane thank you for the information,as they say all MSA sufferers have different symptoms , I find IT very frustrating as different consultants have different ideas thank you once again for the info . Regards Chris23rd April 2019 at 4:32 pm #15125
I do not have MSA but my husband does. I was wondering if anyone has tried medical marijuana for pain. We live in the USA and it is just started being used for medical reason. I am looking for info.
Thanks Pcolunio4th June 2019 at 4:34 pm #15293
Here is an up date on my husband.
In the past 3 months he has started having reflux when sleeping. I have had to wash the bed linens the next day. He wakes up coughing and it will not stop until he is sleeping sitting up.
He was given a med. that he ended up being allergic to. He was then given another med that did not work. However, he is now taking a another new med and he slept through the night.
My husband is at home by himself. I have to work. He has told that he does not want me home until he absolutely needs someone there. (We have a plan) Yesterday when I got home I found the glass to the oven door was completely missing. When I asked what happened he said he slipped. His hip hit the glass and shattered. Two days prior to this he “slipped” into the sliding glass door. Since he started therapy he has not fallen. But his shuffle has gotten worse. Today he said his right leg was giving him more trouble. He asked me if I had put the medical pot in his coffee this morning. No I did not.
His breathing is not right. It’s getting harder for him to get his breath out. In turn, his speech is dwindling to almost nothing. Getting a machine to help him communicate is unbelievable slow! But I am still plugging away at it.
I am deliberately being blunt. I feel a need to be . Because this disease is rear no one is talking. I look for info. and support everywhere I can. But it is almost non-existent. The more we talk the better off we will be.
Thank You to everyone who has read this.7th June 2019 at 8:15 pm #15306
it sounds like you are having a difficult time going out to work but not sure what is happening at home. We had a little patch the same and Geoff did have a couple of falls, one of which hurt his hip a bit and he had a couple of days having to stay on the bed, so he then relented and started using the 4 wheeled walker that the physio had previously assessed him for but had been banished to the garage! He is actually quite risk averse so that wasn’t too bad. He continued to walk with his stick if he could hold onto me out in public. He didn’t fall again!
I hope that the reflux problem has settled again, Geoff hasn’t really had that problem at night but does take Lansoprazole every day and domperidone for anti sickness, but he is fed by PEG tube now.
I hope that you can get the right help for communication. We have had lots of equipment along the way but sadly now he isn’t able to use any of them so blinks, nods, shakes of head and a letter chart which I just made on the computer are our main ways of communicating apart from those occasional days when he suddenly has a voice and starts asking have i done this, that or the other!!!!!
Anyway keep fighting the fight – we’ve got this!!!
Diane10th June 2019 at 2:50 pm #15310
I read your response to my husband. We looked at each other and smiled! I said to him we are not a lone! He does the same thing with the things we have bought for him.
My husband will put his hands on my shoulders and use me like I am him walker. All I have to do is stand with my back to him and I move when I know his hands are on my shoulders.
As for the reflux, we just keep plugging along. Same with the communicating device.
Thank you for sharing this. You made us smile and that is something!13th June 2019 at 9:12 pm #15345
Thanks for sharing all your experiences about the BP and stuff. I have struggled with the BP recently. It manifests itself as neck and shoulder pain.I get it checked by staff at work ( I work in a hospital ) and they are shocked with the readings 60/30 and such! I have been given a steroid to take, not sure if it helps but hoping. BP has been better recently, maybe less bike riding helps! My problem seems to be tingly feet and weakness especially when I weight bear for longer than a few minutes. walking is out the question, but i can peddle for a long way!! keep going everybody
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