More tests

[Purplegoth]

Haven't posted on here for a while as life seems to have got in the way. Firstly my partner and I got married 4 weeks ago today, Halloween, which is my favourite day of the year.

We are currently on our way down to UCHL London for 2 days of more tests. My now husbands, still can't get my head around that!!!, symptoms are getting worse, especially tiredness and the extremely low blood pressure readings. The hospital are still treating the condition as Pure Autonomic Failure and I'm hoping, with absolutely everything crossed, that they find nothing else. MSA is very rare but PAF is rarer and we find it very hard without much moral support. The hospital have been fantastic but its the support network that lacks as only 180 people in the country have PAF. X

[Frenchoak]

Congratulations 🎊 on your recent marriage! Hope it was a lovely day surrounded by loving family and friends ❤️

Hope trip to London goes OK for you.

Best wishes 😀

[Purplegoth in reply to Frenchoak]

Thank you so much for your reply. Sometimes even a reply is just enough to know people are out there. X

[Hightidelowtide]

Hello Purplegoth - so sorry to hear that you feel you are in your own, so please do keep posting here. Everyone here is rooting for everyone else, and there is so much helpful information that is shared, and genuine happiness for any good news such as your recent marriage. Congratulations! And well done for getting down to London -as a carer myself I find the huge responsibility of those sorts of outings incredibly daunting. But well worth doing. On the low blood pressure front, my husband is now on midodrine 3 times a day and watching from the sidelines I think it has made a small difference to his energy levels, dizziness/fainting/seizing up, and he’s not feeling so cold all the time. That small difference is good to have, and I hope you’ll be able to find something that works for your husband.xxxx (ps the msa trust has a good leaflet on managing low blood pressure)

[Purplegoth in reply to Hightidelowtide]

Thank you so much for your reply.My husband is on midodrine, the maximum dose you can have, also fludrocortisone and a injection called octrotide when he eats. We have still seen BP readings as low as 50 over 35!

This isn't his first time in London but yes daunting trips as we have to travel and I have to take time off work. X

[AliT-1]

congratulations what lovely news❤️

I too have not posted for a while. My husband diagnosed with Parkinson’s in 2017 Things have progressed mainly low blood pressure, tiredness feb thought psp then msa then lewy body been to hell n back - now think Parkinson’s dementia. Keep battling on - be that pest to get answers. Midodrine has certainly helped 10mg,10 mg 5mg also at 7am .5 of fludrocortisone which has helped amazingly with b/p.

Also have plenty of salted crips and drink as much fluid as you can on the train or every day 😃 it all helps.

Good luck getting an answer.

[Purplegoth in reply to AliT-1]

Thank you so much for your reply.My husband is on midodrine, the maximum dose you can have, also fludrocortisone and a injection called octrotide when he eats. We have still seen BP readings as low as 50 over 35!

This isn't his first time in London but yes daunting trips as we have to travel and I have to take time off work. X

[AliT-1 in reply to Purplegoth]

Safe journey xx

[Monkeyfeet1]

congratulations on your recent wedding. and at Halloween 🎃 too! I hope your trip goes well and you get some answers. X

[Purplegoth]

Thank you for your reply. Yes halloween and I had a broomstick too!!! X

[Monkeyfeet1 in reply to Purplegoth]

🤣

[Fatwallet]

congratulations to you both. I wish you every happiness for the future. Wishing you the best of luck with the tests, take care x

[Purplegoth in reply to Fatwallet]

Thank you. Your message means alot to me. X

[Photo1250]

Congratulations 🎉 and good luck.

[Purplegoth in reply to Photo1250]

Thank you very much. Your message means so much.

[Spangle2000]

Congratulations! Hope it was a fantastic day and that the tests went ok.

[Derkie54]

Hello,

Good luck to you both, whatever label they put on it the fact remains that it's not great feeling ill most the time.

I hope you get some answers soon.

Take care and smile when you can, you're doing your best to support your new husband.

You can't do anymore than that.

Regards

Derek

[Purplegoth in reply to Derkie54]

Thank you for your reply . They are certainly words of encouragement for me. X

[Purplegoth in reply to Derkie54]

Thank you for your reply . They are certainly words of encouragement for me. X

[5456partner]

Yes, congratulations!!! Good news amongst the storm. Hope all goes well for you and you not only get answers, but good treatment and support. Xx

[Purplegoth in reply to 5456partner]

Thank you very much for your message. Means alot to me. X

[Kaye31]

congratulations xx

[Purplegoth in reply to Kaye31]

Thank you. X