Suspected MSA

[Bovts2003]

Hello, thank you for being there. Someone I love has been diagnosed with Parkinson’s for 2 years. Recently suspected to be MSA. They have been admitted into hospital as they are very weak and blood pressure keeps dropping. Hospital have rehydrated them and says blood pressure is fine. The problem is they are now a lot worse than when they were admitted only a few days ago. Extreme Difficulty swallowing, toileting and walking. Does anyone have any advice? Thank you.

[Yanno]

Hello and sorry you need to be here.

One of the main issues with MSA is that any bout of illness, hospital admission etc. seems to leave one a little worse than before. We had a visiting speaker to our support group who talked about everyone having a 'reserve' of let's say energy or resilience. Any illness or duress uses up that reserve and the person living with MSA is left with greater symptoms than before. Sadly there's no magic formulae to regaining that reserve, just being positive, lots of rest, lots of love and plenty of water.

My Jackie had a number of 'drops' like this and usually gradually improved however sadly, quite often not fully to her previous level. Good luck and keep positive for your loved one. Take care, Ian

[Bovts2003 in reply to Yanno]

Thank you so much. That is very helpful.

[Whitefeather1]

Hello, and welcome to the group and sorry you need to find yourself here.

I used to find what you experienced with my friend. She stopped going to the hospital because of lack of Dr knowledge of the disease, and she'd always be worse when she came home.

Have you been in touch with MSA Trust ? They have a wealth of experience and support.

msatrust.org.uk/

Caroline.

[Bovts2003 in reply to Whitefeather1]

Thank you. Yes, someone is calling me back today.

[Frieden in reply to Bovts2003]

Mir geht es leider auch so nach jedem Klinikaufenthalt kommen immer mehr Symptome hinzu.Kein Arzt hier in Deutschland glaubt mir.

Wird alles als eine schwere Depression gesehen obwohl kein Medikament anschlägt.

Habe Ende November bei einem Spezialisten einen Termin.