Heart retaining water, probably not heart failure

Posted by mclinda53 @mclinda53, Jul 14, 2011

hoping to find a diagnosis. Was in the hospital for 9 days last month and was told I had congestive heart failure. I had retained a lot of water. Well yesterday I had a heart catheterization on the left and right side, all came out great. Was told my heart is in good shape and they did not think I had congestive heart failure. They do not know why I am retaining water why I get exhausted by doing very little. No one can explain why my legs from my inner thigh to below my knee are red and hurts looks like I have a sunburn on my legs.. My legs get heavy and tiered. I was also told I had Raynaud’s disorder back in April. And from the on every time I turned around I would have something going on with me. Does anyone experience this type of symptoms

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It sounds to me like its an autoimmune disease of some sort. Maybe more than one actually. I am an advocate for the AARDA.ORG site as they list over 150 diseases that the health care providers don’t know about. Please google it and maybe this is where you will find some answers, and Im so sorry that you have to go through all of this. I posted an essay in the social media contest to tell my story about what I went through before I actually got a diagnosis which was 35 yrs ago. I hope you will read it, as you sound a bit like me and what I went through. Best wishes to you and I hope I could be of some help to you. Take care.

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Hi Sibley 12, just got out of the hospital after 2 weeks. Well we finally got a diagnoses. Yes I have an autoimmune disorder called polymyositis along with Raynaud’s.
I am still learning a lot about this and having a hard time accepting it.
Again thank you!!!!

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@mclinda53

Hi Sibley 12, just got out of the hospital after 2 weeks. Well we finally got a diagnoses. Yes I have an autoimmune disorder called polymyositis along with Raynaud’s.
I am still learning a lot about this and having a hard time accepting it.
Again thank you!!!!

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I was diagnosed with polymyositis in 2003 along with Raynaud’s syndrome. If I can help answer a question’s, I will try to help. Mel

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@mclinda53

Hi Sibley 12, just got out of the hospital after 2 weeks. Well we finally got a diagnoses. Yes I have an autoimmune disorder called polymyositis along with Raynaud’s.
I am still learning a lot about this and having a hard time accepting it.
Again thank you!!!!

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thank you for your response. Been in the hospital again should go home next week after being here for 7 weeks.
How are they treading you polymyositis and are you in remission. I have a long road of recovery ahead of me and are a little scared!!!!

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What are the causes and symptoms of Raynaud's Syndrome compared to Peripheral neuropathy? I have Essential Thrombocytosis, (a rare blood cancer) since 2014 and have had increasing numbness and tingling with pain in my fingers and hands along with peripheral neuropathy throughout my body. I also get cold very easily and my fingers turn from white to red or blue when they get cold. It is sometimes hard to walk with the numbness in my feet. I take hydroxyurea 500 mg every other day to control my blood platelet count with the ET. This does not seem concerning to my oncologist. Any insight would be appreciated

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