Hello and Happy New Year to you all. I am new to this group, and am considering making an appointment at the Erythromelalgia clinic in Minnesota, even though I live in San Francisco. It might be worth the travel expense to get the thorough testing and diagnostics for my EM, which I've had for nearly 4 years. Have any of you gone to this clinic, and if you have, what was your experience like? Was it beneficial? Thanks in advance!
I went to Mayo's in Rochester, MN. twice in 2006. After extensive testing I was diagnosed with EM but unfortunately there is not much they can do. Try checking the EM website, especially articles by Dr. Jay Cohen (now deceased) he did a lot of research and published papers as he was a long time sufferer from EM. My EM went into remission but came back last year. I also have Raynaud's, so my hands and feet are either cold (toes blue and purple) or red and hot. I use Aspercream with Lidocaine on my feet if they get really bad during the night. It helps same.
Good luck.
Hello and Happy New Year to you all. I am new to this group, and am considering making an appointment at the Erythromelalgia clinic in Minnesota, even though I live in San Francisco. It might be worth the travel expense to get the thorough testing and diagnostics for my EM, which I've had for nearly 4 years. Have any of you gone to this clinic, and if you have, what was your experience like? Was it beneficial? Thanks in advance!
Oh wow, I didn't realize that there was an application process. Did they say why you were not accepted, as in, your symptoms were not what they were looking for in their study, or they already had too many people? I was thinking I could just contact them and see if I could get an appointment this summer, when I could come out to MN. I guess I will just give them a call and find out what the process is. Assuming my EM is secondary to something, I am most interested in the additional diagnostic tests to determine what that "something" is. My doctor had me try 2 weeks of high dose aspirin, which had no effect, leading her to rule out primary EM.
Oh wow, I didn't realize that there was an application process. Did they say why you were not accepted, as in, your symptoms were not what they were looking for in their study, or they already had too many people? I was thinking I could just contact them and see if I could get an appointment this summer, when I could come out to MN. I guess I will just give them a call and find out what the process is. Assuming my EM is secondary to something, I am most interested in the additional diagnostic tests to determine what that "something" is. My doctor had me try 2 weeks of high dose aspirin, which had no effect, leading her to rule out primary EM.
I called and talked with someone who took all of my information and submitted it. I was told that I had a really good chance of getting accepted. Someone there reviewed my information and I received a letter informing me that I was not accepted and that I could try again in a year. This is my third year experiencing EM and would love for someone to find a cure . Good luck to you and please keep us informed of your progress .
I have been recently diagnosed with erythromelalgia in both hands and feet. I am 53yr old male. I also have elevated CK & ALT levels, blurred vision, left eye #4 nerve palsy, lower limb peripheral neuropathy, fatigue, and shortness of breath. I am trying to find someone who can point me to the contact info for the erythromelalgia clinic at Mayo Rochester. I have been getting worse over the past 2 years and now find it hard to do anything without pain.
I have been recently diagnosed with erythromelalgia in both hands and feet. I am 53yr old male. I also have elevated CK & ALT levels, blurred vision, left eye #4 nerve palsy, lower limb peripheral neuropathy, fatigue, and shortness of breath. I am trying to find someone who can point me to the contact info for the erythromelalgia clinic at Mayo Rochester. I have been getting worse over the past 2 years and now find it hard to do anything without pain.
@rman1 You sound like you have quite a bit going on. It’s not easy getting into Mayo Clinic so you may want to work with your doctor and get them to help with the referral. I included the link to a discussion group on traveling to Mayo. https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
Also, at the bottom of this page, in the blue area, is a button for ‘request an appointment.’ This will take you to the main appointments desk where you can ask questions
You can also go to the top of this page to the white space with the magnifying glass and type in ‘referral to Mayo Clinic’, then tap search. Individual discussions will come up and you can scroll through them.
I hope this helps a little.
@rman1 You sound like you have quite a bit going on. It’s not easy getting into Mayo Clinic so you may want to work with your doctor and get them to help with the referral. I included the link to a discussion group on traveling to Mayo. https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
Also, at the bottom of this page, in the blue area, is a button for ‘request an appointment.’ This will take you to the main appointments desk where you can ask questions
You can also go to the top of this page to the white space with the magnifying glass and type in ‘referral to Mayo Clinic’, then tap search. Individual discussions will come up and you can scroll through them.
I hope this helps a little.
Thank you for the information. I am going to try and get my doctor to do a referral. My current rheumatologist does not seem to know which direction to go. I am pressing and more and more things are showing up on tests as time goes on.
Thank you for the information. I am going to try and get my doctor to do a referral. My current rheumatologist does not seem to know which direction to go. I am pressing and more and more things are showing up on tests as time goes on.
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I went to Mayo's in Rochester, MN. twice in 2006. After extensive testing I was diagnosed with EM but unfortunately there is not much they can do. Try checking the EM website, especially articles by Dr. Jay Cohen (now deceased) he did a lot of research and published papers as he was a long time sufferer from EM. My EM went into remission but came back last year. I also have Raynaud's, so my hands and feet are either cold (toes blue and purple) or red and hot. I use Aspercream with Lidocaine on my feet if they get really bad during the night. It helps same.
Good luck.
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2 ReactionsI have been using Silver Shield Gel from Natures Sunshine to help with my burning . It helps me to be able to sleep at night
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1 ReactionI hope you have better luck than I had. I was turned down and have to wait a year to reapply.
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1 ReactionOh wow, I didn't realize that there was an application process. Did they say why you were not accepted, as in, your symptoms were not what they were looking for in their study, or they already had too many people? I was thinking I could just contact them and see if I could get an appointment this summer, when I could come out to MN. I guess I will just give them a call and find out what the process is. Assuming my EM is secondary to something, I am most interested in the additional diagnostic tests to determine what that "something" is. My doctor had me try 2 weeks of high dose aspirin, which had no effect, leading her to rule out primary EM.
I called and talked with someone who took all of my information and submitted it. I was told that I had a really good chance of getting accepted. Someone there reviewed my information and I received a letter informing me that I was not accepted and that I could try again in a year. This is my third year experiencing EM and would love for someone to find a cure . Good luck to you and please keep us informed of your progress .
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Like -
Helpful -
Hug
1 ReactionI have been recently diagnosed with erythromelalgia in both hands and feet. I am 53yr old male. I also have elevated CK & ALT levels, blurred vision, left eye #4 nerve palsy, lower limb peripheral neuropathy, fatigue, and shortness of breath. I am trying to find someone who can point me to the contact info for the erythromelalgia clinic at Mayo Rochester. I have been getting worse over the past 2 years and now find it hard to do anything without pain.
@rman1 You sound like you have quite a bit going on. It’s not easy getting into Mayo Clinic so you may want to work with your doctor and get them to help with the referral. I included the link to a discussion group on traveling to Mayo.
https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
Also, at the bottom of this page, in the blue area, is a button for ‘request an appointment.’ This will take you to the main appointments desk where you can ask questions
You can also go to the top of this page to the white space with the magnifying glass and type in ‘referral to Mayo Clinic’, then tap search. Individual discussions will come up and you can scroll through them.
I hope this helps a little.
-
Like -
Helpful -
Hug
1 ReactionThank you for the information. I am going to try and get my doctor to do a referral. My current rheumatologist does not seem to know which direction to go. I am pressing and more and more things are showing up on tests as time goes on.
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Helpful -
Hug
1 ReactionMine is mostly on the left as is most pain I have for any reason. I have been dealing with this for more than 30 years.
@rman1 Have you had any luck getting your doctors to help with a referral?