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Hi Shenriq, I was diagnosed with ET in 2013. I have been on hydroxyurea 500mg along with a baby aspirin since 2014. Over the past years I have developed many symptoms that don't seem related to the ET, which is what also brought me to the connect groups looking for answers.
I have learned that the tingling and numbness in my feet, legs, face and head are experienced by many with ET. I also suffer from bruising in my feet, color changes numbness, coldness and tingling in my hands which I'm told is Raynaud's Syndrome. This I assume, is related to the other symptoms.
Although I have yet to find anything to remove the symptoms, it has eased my anxiety a lot to connect with others with similar stories. By nature I am a researcher and want to know what and why....Having a rare disease with little known information has been a challenge. Just hearing the stories of others and getting impute from the moderators and helpful information has been a Godsend to me. I hope this is an encouragement to you too . Blessings.
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I am well acquainted with Raynauds Syndrome, as my mother had it over the last 10 years of her life. My understanding of Raynauds is that there is a blood flow issue and extremities become extremely cold, fingers actually turn blue! That is a very different symptom, in as much as mine involves a low burning sensation.
Learning from other ET patients is useful and helps corroborate my own experiences, particularly invaluable when dealing with many unknowns of ET. Thank you!