any advice welcome: morning my hwp is... - Multiple System A...

Multiple System Atrophy Trust

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any advice welcome

Epace profile image
4 Replies

morning my hwp is going to atypical clinic on Wednesday - since christmas his blood pressure so very low I have to be at his back to catch him, bowel problems, very tired, dizzy sees things blue, sore legs, lost weight.Has twitch seizure type movements. This sound familiar? He is still in bed - should I waken him or leave him? Feel so lost until diagnosis, husband knows nothing of this possible diagnosis, so hard. Feel better for venting,

😊

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Epace profile image
Epace
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4 Replies
Ruffner profile image
Ruffner

So sorry to hear about your husband. How long has he been diagnosed with Parkinsons? This does sound familiar but if he is in later stage it could be the progression of PD. Have you checked his blood pressure when he is lying down to see if he is experiencing supine hypertension. In my husband's case it is typical for his supine blood pressure to be 190/115 and standing 70/40. It will fall rapidly (within a minute) and he feels very poorly. Also, has he been treated for Parkinson's disease and if so has the medication helped? You said he knows nothing about the possible atypical diagnosis. Is he unable to understand what is happening? Hope you get some answers soon.

Epace profile image
Epace in reply to Ruffner

his bp yesterday standing was 72/53 he is still sleeping can’t waken him! Doc said you want me to come😡 been in bed since 630 no toilet juice tablets feel so alone. Had pd since 2016 diagnosed but maybe before that.

Possible msa 5/10000 people get it, low bp, bowel problems, seeing blue n blurry weight loss

Thanks for listening

Gill-C profile image
Gill-C in reply to Epace

You must feel very alone. I’m sorry it’s so hard for you at the moment. You need extra care not only for your husband but to support you too. Sounds like MSA, but to be honest it maybe doesn’t matter at this stage what the name is as it’s just about treating your husband’s symptoms. You definitely need the GP to refer you on and what about your Parkinson’s nurse what do they think? Some PD meds can have the effect of lowering blood pressure. I hope you get some support soon.

Epace profile image
Epace

thanks for your messsge. Msa clinic on Wednesday so hopefully we get answers. Your right its about getting it right for my husband.

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