Finally got a new specialist!

General
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So I have finally been referred to a different dermatologist/rhumatologist by my current derm. I just met with him yesterday and he’s intrigued with my situation. My case is turning out to be genetic or familial (not quite sure how to put it) my sister ha had it for years, now my daughters feet have started flaring up. This new specialist is very familiar with em and said I lean more towards that, but he has never seen it with blisters. He also has an em expert who works in his clinic. So he wants to run some more tests. He told me I’ve either got a rare form of what they call ana negative lupus or em. Either case I now finaly feel like I’m in good hands.

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I was originally dx’d with ana negative lupus and then the VA hospital Rheum said that was impossible and that was in 1998. Now my ana is positive every time but still no diagnosis. I’m heading to see a Rheumy tomorrow to see if she knows anything about Erythromelalgia. My pain mgmt doctor didn’t have a clue but is referring me to others. After the Rheum visit I’m heading to a neurologist in April 2017 because he’s booked up til then.

Good luck to you Natalia.

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Thank you . I had heard a little about ana negative lupus before, but it was more hemotologists than rhumatologist looking into it. Hemotologists have been trying to change the criteria so that people can try the treatment options and continue to be monitored. some people took 10yrs before they started to come ana positive. Plus however many years it took before a doctor would actually investigate their symptoms. I wish all the best for you and hope you have some answers and acknowledgement soon. Don’t back down and keep on pushing until your voice is heard.

-------- Original message --------
From: hayley3 <■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■>
Date:12-21-2016 7:06 AM (GMT-08:00)
To: ■■■■■■■■■■■■■■■■■■■■■■■■■
Subject: [Living With Erythromelalgia - Online Support Group] [General EM Discussion] Finally got a new specialist!
hayley3 December 21 I was originally dx'd with ana negative lupus and then the VA hospital Rheum said that was impossible and that was in 1998. Now my ana is positive every time but still no diagnosis. I'm heading to see a Rheumy tomorrow to see if she knows anything about Erythromelalgia. My pain mgmt doctor didn't have a clue but is referring me to others. After the Rheum visit I'm heading to a neurologist in April 2017 because he's booked up til then.

Good luck to you Natalia.

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