I am a new here

Welcome New Member Introductions
1

Hello everyone.

My name is Paula and I am glad to have found a forum with others with EM but not glad that I have it or that any of you do.

I also have Lupus but nothing has been confirmed as to the reason I have EM.

It started about two years ago with my toes at night. Hot burning red, then proceeded to the bottom of the foot and some on top. About within a year my hands started red hot and throbbing pain. Not much swelling thank goodness. I traveled to Florida as I live in Massachusetts. This was last April. Due to the change in degree and the warmer climate the EM was in full flare. My vacation I spent with cold packs on my arms and hands. My veins started to bulge and be enlarged on my hands and arm when the heat hits. My feet too. I now noticed the vein bulbing in the stomach area on each side. The veins when enlarged go up my arm to my neck. I best described this as a horror movie, when the black stuff is showed flowing quickly throught the veins. It’s how I feel.

I took pictures and gave to my doctors, pcp, rheumatologist, vein specialist, pain clinic, heart specialist. I even went to a teaching hospital in Boston and saw the chief of rheumatology who had no clue. Funny but I see that EM was studied there and on patients that had it yet the chief of rheumatology had no idea? It’s unreal really.

I diagnosed myself and now am in the process of trying to find doctors that actually know about this disease and treat it? I supposedly have the best teaching hospitals in Boston but I have found that they are no more knowegable there about a lot of things not just EM then they are locally. The teaching hospitals have gone down hill.

My next step is to maybe take a trip to the Mayo Clinic in Minn. Checking out insurance, etc there now.

I am sorry that all of you have this symptom and disease and I intend on bringing much awareness .

I plan on bringing information to all the doctors that had no clue. So that this may not happen to anyone else.

I plan to get involved as much as I can to bring awareness and money to this much needed disease to be further researched and come up with new treatments.

My days are in researching this now and I have a bunch of other illnesses as well and some undiagnosed.

Weight loss that no one can figure out is a bigee but I don’t see anyone suffers this from EM.

I hope to meet people and be able to learn from you as well as help when I can.

I hope today brings much relief !

Paula

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For anyone planning a trip to Mayo, you may want to rethink. I cancelled my appointment for a couple of reasons. You should watch the utube documentary by Lauren chapman, woman on fire. It chronicles her entire trip to Mayo and Dr. Davis (who is very arrogant ). If you need to go to get a diagnosis then that is a good reason to go. If you are already diagnosed, dr Davis offers nothing more than my neuro offers, ketamine and amitriptyline cream, ways to help relieve symptoms, like elevation, avoid heat, etc. the utube documentary is awesome so I would encourage you to watch it first. She then has an update in a separate utube documentary where she shares her thoughts on Mayo, Dr Davis and if she would do it again.
Thank you!
Robyn

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Hi Robyn

How did you find a remedy to your EM
Or doctors willing to try stuff?

thanks for any information

4

I will watch this video because I’m on a waiting list for mayo to see Dr. Davis. I’ve been wondering too what will I really get from that appt? Just to confirm what I already know that I have em. If he isn’t going to investigate the causes as to why you light have em then I think it’s a waste. When I asked the seller rotary what am I supposed to do while I am on a year waiting list. Yes you heard that right one year. She said if I were you I would try to get all the testing I could and help now. That being said I’ll probably agree with the video. Once I watch it, I’ll give my opinion here on it. Not that my opinion matters lol.

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Your opinion matter a lot! I am not trying to turn anyone away from Mayo or hope but with all the years they have had this clinic, nothing has changed. $$$$$$ . If you are convinced of your diagnosis then Mayo doesn’t have a cure. The only thing I’ve found helpful is having one local doctor (usually neuro) who is willing to try ablasions, Botox, etc. I was lucky enough to have a doctor who got me appt at Mayo in 2 months. After much thought and input from my medical team (and watching video of Lauren chapman) I cancelled. Trial and error is the only thing we em sufferers have. Make sure you have a doctor who is willing to read up on em and try new stuff. I’m getting a ketamine infusion (30 hours) in two months. It has shown to help with depression and chronic pain patients. Whether it will help with em ??? I will let you know.

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I happened across a neuro (after many neuro, Rhuemo, podiatrists, dermos) who had actually seen it in her residency at ucla. I am a Kaiser member and even after my diagnosis, they supposedly checked all of Kaiser nationally and no doctor had ever seen it, so therefore, couldn’t diagnose or treat it. Luckily they used my out of network diagnosis and are now prescribing and working with me.
Best of luck!

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Hi again

Please let us know if the infusion worked for you…and the Em pain

Thanks!

8

My infusion got pushed back to September 14. I will let you know!!!

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Robyn,
Kaiser couldn’t have checked nationally because the doctor who has successfully treated my EM is a doctor that works for Kaiser. I’m on the east coast though. I’ve only had to see him twice, once for my initial appointment and then once for my follow up. He had a precise idea of what he thought would work for me and it did. That was 2 years ago and the status quo has held since. I went to a doctor, he evaluated me, wrote me a single prescription, and I got better. I recognize that’s really rare here. Of course, that only happened after I fought with Kaiser. He wasn’t the first doctor I saw or even the first Kaiser sent me to after I gave them an ultimatum, but they did find him. So, Kaiser does have employees who can treat Erythromelalgia. It defies belief that no one at Kaiser in California is familiar with it. They just didn’t look hard enough for you.

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Omg! Really! I am so happy for you! Would you mind giving me your Kaiser doctors name and where you are located? I seriously spent over 75,000 dollars out of network. I finally found a doctor at Kaiser who has never seen it but is willing to think outside the box. 33 hour Ketamine injection next and then, if that doesn’t work, a spinal implant. I am intrigued that you found someone at Kaiser because I was told repeatedly that they checked their entire network and came up with no one. Are you doing better???

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Doctors aren’t interested in Research anymore, it’s all about their paycheck. I had a Neuro diagnose me and he says EM is a neurological disorder, when I feel it’s an autoimmune disorder. He is classified as the “Expert in EM” in the midwest but he doesn’t know how to treat it, he can only diagnose it. But most of the patients that go to him, already know they have it before they get there, so he is really just confirming THEIR diagnosis.

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12

Yes I agree

they really don’t want to research EM at all
And I went to two “research” lol … major university hospitals in Bay Area California

Just send you straight to pain management for trail and errors

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Just curious which hospitals ! I live in San Jose. I’m thinking you went to Stanford and UCSF??? I tried Stanford and was told no one there had seen EM either!

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Me again! What medicine did your doctor prescribe that helped you???
Thanks !

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Haha Robyn I’m in Santa Cruz !

Wow an actual person with EM in this area I heard there was a couple… sweet​:grinning::stuck_out_tongue_winking_eye:

And yes it was both hospitals
Lol

I spent almost two weeks at Stanford with no answers , but seen a ton of specialist while staying in the hospital everyday
(Saw many dermatologist , Neurologist , care wound specialist, care management, pain management, critical pain management , x-rays , biopsies, blood test and strange blood test etc etc etc…)
Funny because I had done most all the test they gave me at Stanford, I had previously done with all the Santa Cruz doctors , so I redid most test either 2-3 times!!

.
.

Excellent great staff and very very intelligent
But no real answers
Other then see critical pain management which I am thankful for!!!
But still have yet to find a remedy for the pain!
I am still in pain

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If it wasn’t for my Pain Mgmt doctor, I’d still be undx’d but he was willing to send me to the Neurologist. When you start asking for pain meds, they try to fix whatever is causing the pain. lol

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Wow! Did you happen to see Dr Leeper (vascular) at Stanford? I just saw him listed on our website for diagnosis of EM. My friend works with him and is emailing him today to see if he truly is familiar with EM, etc., before I make appointment. My EM doctor is in LA and I love her but this is obviously closer! I’ll keep you posted. Do opioids help with your pain? Or things like gabapentin ???
Thanks!
Robyn

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Hi Robyn…thank you so much for this information. I will check out the utube video.
Thanks again!
Christina :blush:

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@Robyn3 and @Artartartartanthony Hello, I am a Kaiser patient at the San Jose location. My Dermatologist diagnosed me with Erythromelalgia and Raynauds. Her name is Dr. Vivian Van. She has one other patient with EM. She is more knowledgeable than my other doctors however not up to date with all pain relief methods or remission tactics.
My question is who have you found at kaiser locations?
This thread gives hope of help at kaiser but never gives any names.
Thanks for the help! Would love to chat with local folks, I live in Morgan Hill.