Help

[sarahbb]

Hiya,

My husband for the last 2 years has suffered with gastroparesis (stomach paralysis) and his esophagus has stopped working. The consultants do not know why or what has caused this as it is extremely rare to have the 2 together. He has just also been diagnosed with Raynaud's. Now I think there is some sort of connection. Has anyone ever heard of this before??

Thank you

[gindy]

I've got dysphagea (can't swallow properly) and it's linked to SSc and Raynauds. It comes under the CREST acronym.

I'd definitely mention the possibility to his specialists, try and get in with a rheumatologist who'll be able to check for this.

[sarahbb in reply to gindy]

Thank you. I feel happy that it might help diagnose him. He has had every test going but they cannot find what it is or what caused it. He also has an under active thyroid which he has had all his life. It all started 2 years ago with difficulty in swallowing. Then they found his stomach not working. He currently has a feeding tube and is waiting to go back into hospital for one fitted through his stomach. I will defiantely memtion it to his consultant

[gindy in reply to sarahbb]

Good luck, it sounds awful for both of you! Can't imagine having that on top of a non diagnosis.

At least I know why I can't swallow properly, it goes someway to understanding your own body.

Certainly push for tests for SSc, and once again good luck. 👍

[tall-tim]

Yes - ask a rheumatologist and ask them to do blood tests for Scleroderma.

[Hidden]

Also take a look at autonomic sensory neuropathy/ PoTS/ Dysautonomia and Ganglionopathy /AAG. The last is very rare and all can sometines accompany any connective tissue disease and MS, but can also appear without a known cause. I have a mild version of this as part of my neurological presentation or Sjogrens and possible Scleroderma. It must be awful for him I do hope you both get answers soon.