My visit to the Mayo Clinic in MN

Just wanted to share my experience visiting the Mayo Clinic in MN the end of last October through early November. I was scheduled to see Dr. Davis early on a Monday morning and then a follow-up two days later in the afternoon. He ordered more tests than were already booked for me. So the first day, my husband and I were there for 9 hours! It is a comfortable facility if you have to be there for that long. I had to get ice in a small bucket I brought because my feet were flaring so badly. I had to be wheeled all over in a wheelchair by my husband. It can be a lot of walking in the tunnels between buildings. I had nerve tests, and tests for veins as my left foot has been swollen for over 2 years. The only test I couldn’t deal with was the sweat test. It felt like being broiled alive in an oven (112 degrees & 40 percent humidity). After 5 minutes they had to take me out and I was shaking uncontrollably and my left foot felt like it was covered in molten lava!! In the end, Dr. Davis said I had tried all the medications he would normally recommend for EM. He wanted me to try Lidocaine patches again (they still don’t help) and a cream I had tried 5 years ago. I didn’t get to see a neurologist because they were all booked up. I was diagnosed with SFN, LFN and deep vain insufficiency in my calves. He wanted me to go to their Pain Rehab Clinic for the 3 week program. I visited it while there and was told it could help people that had healed from a condition but still suffered the pain. Well, looking at my red swollen feet, I don’t think one could say I have healed. Didn’t think it was for me, and couldn’t afford it as I was coming all the way from San Diego (you have to pay your own room and board and maybe my insurance would cover some of the program).
Overall, the Mayo Clinic was an amazing place, but I really didn’t get any answers except elevate my feet above my heart every 2-3 hours for 1/2 hour, walk, and lose weight. Not easy when your in constant terrible pain and the meds I take caused weight gain.
After coming home, I called UCSD Pain Management and met with a Dr. Reedy who has treated others with EM. I am hoping he will eventually be able to help my pain to some degree.

That sounds unsatisfying. If you haven’t already, I’d search medical journals for every published paper on erythromelalgia (you’ll need a subscription for that) and make a list of all treatment options. Find a doctor who will help you work your way through the list. Just try every treatment that has been published as being successful. Leave no stone unturned.

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Hey Jewels

Thanks for sharing your experience, I’m sorry it didn’t seem to be a good one. The sweat test sounds miserable! Kudos to you though, for even attempting!

I hope you get farther at UCSD pain than at Mayo. I think what we all need is a dedicated doctor who will be ok with just plowing through treatments and helping you organize the order to attempt them.

I am not sure if UCSD does lidocaine infusions - but I think that might be better worth trying than lidocaine patches.

If you search in this group, someone linked to a good cumulative review paper (just search “cumulative”). Not mentioned in that paper - CBD oil, THC / medical marijuana (THC will help to stabilize the sensory nerves by being a CB1 agonist unlike CBD … though THC is pretty vasodilating), low dose naltrexone, “Bob’s desensitization protocol”.

My impression is that applying to a Center of Undiagnosed Diseases (NIH) has the potential to be more helpful than Mayo. Some people with EM go.

Hope you can recover ok + rest from your trip. Take care

Thanks for the update! I go in two weeks but am going through internal medicine for POTs, possible EM, and some other stuff. Any recommendations on how to approach the visit? I’m not expecting a magical cure but I’m hoping to settle in on a diagnosis. I’ve gotten to the point locally where my doctors are constantly saying ‘I’ve never seen that before- let me know what Mayo says!’

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@astrogrl I got bounced around a lot at first due to a lot of doctors not knowing what it was and then got referred to Mayo, then prescribed a 3 month long treatment plan but then it was hard to followup as I didn’t live in MN anymore. I have since found 2 local doctors who were not familiar with EM, BUT they were willing to learn and stick with me. I think this is the most important thing. You are correct as there is no magical cure but finding a doctor, preferably a neurologist, that is willing to learn and systematically try treatments to check off boxes is the best way to go about it. This seems to be how most people find stuff that works for them and Dr. Cohen recommended this plan a few times when talking about how to find a physician to treat EM. With something rare like this you need to be your own advocate and come prepared to visits with research and sound medical papers to display treatments that you are interested in trying.

Hi Jewels,
I too live in San Diego. I have stumbled upon a treatment that has given me huge relief. I have an amazing accupuncturist that I have been going to once a week for a year now. My vascular system is practically normal and flares have been reduced to when temperature is over 80. There is NO swelling in my feet. I am truely amazed. It feels like I have my life back, plus only taking 300mg. Of gabapentin at night. After trying so many other things and so much medication I am thrilled.
What can it hurt to give it a try? Her name is Amber Bonito at AB accupuncture.
Best of luck

I am sorry for you. It’s very hard when you get your hopes up only to be prescribed medications that you have tried In the past. It’s a common thing… Perhaps these specialists don’t believe us or they feel that a miraculous change has taken place and they will start working now. I wish they would open their eyes and see us.. And clear their ears and hear us. What a wonderful world that would be…

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I’m really sorry that you had to go through this! I too suffer from feet that flair, especially when I have any type of injury to my feet/legs! My experience there wasn’t the best so I’ll try not to slam them to bad! I went to Mayo Clinic in 2011, after 24 Dr’s and the Cleveland Clinic failed to give me any answers to the horrible symptoms I was experiencing. The only good thing that came out of my visit was a Thoracic Dr happened to look at my hands then other joints in my body and asked me if I had ever been diagnosed with Ehlers’ Danlos Syndrome (EDS). I had never heard of it but I I knew I was very hyper mobile so it did make a lot of sense! EDS is a connective Tissue Disease. There is many types to it. They wanted me to see a Geneticist there but I would have had to stay another 3 days to get into see him, I’d already been there two days at this point! I had seen a Neurologist first, he was the primary they wanted me to see. He was an ALS specialist, definitely the wrong type of Neurologist for me but that’s who they had me see. I walk in with a arsenal full of medical records and I could see his expression immediately, this girl is crazy… that’s exactly what he diagnosed me with “cra cra”. Fast forward another year and I was finally, properly diagnosed with chronic Lyme disease which brought on my EM along with many other issues. The EDS is genetic, I did bring the order back to IL and went to a Geneticist at Rush who did properly diagnose me with EDS type III. My Lyme disease just makes all of my autoimmune issues that much worse. While trying to treat my Lyme for many years with no success, I bought a Rife Machine. This machine has changed my life! Not only was I able to eradicate my Lyme but when my feet/hands flair from my EM, one overnight program with my machine and the flair is gone!!!

I’m not saying that Mayo is bad, I’m just saying, for me, they were absolutely useless! I always thought that a place like Mayo or Cleveland for that matter, would be able to figure rare, out if the box per-say, illnesses out. Not anymore! You have to be your own advocate and never take no for an answer…, I knew when I got sick out of nowhere, at the age of 45 when this all started heck. I never had any type of EM, Autonomic Dysfunction ( I couldn’t handle the sweat test either ) Reynauds, Thoracic Outlet Syndrome of any other rare, strange disease/syndrome that I was finally diagnosed with until this Lyme hit me like a ton of bricks, out of nowhere. I do use medical marijuana when I have a flair but it’s more for the Lyme when it rears it’s ugly mug, then any of my other issues. My TrueRife machine has been a godsend! :pray: Keep up the fight warrior, you’ve got this! A little side note. I became a Reiki Practitioner after going through all of this. There’s nothing better then the power of ENERGY HEALING…

It is helpful to know what others experience, your story sounds very similar to others I have heard regarding Mayo. I think they might have been innovators in the early days of study regarding the diagnosis of EM, but have not taken the next step in finding treatments that work. I would guess they have become overwhelmed.

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I have actually tried CBD oil at different strengths, no help. The doctor at UCSD wants me to try oral lidocaine but they don’t prescribe meds they want your GP to do that so they can monitor you more closely. My GP wouldn’t prescribe the medication so he wanted me to see another pain management doctor closer to where I live. I saw him and he wants to do homework on this so again I wait for another appointment. This is all been going on for over two months and you just hurry up and wait! The doctor at UCSD mentioned infusions, but they don’t do them at UCSD but he knows somewhere in San Diego where it’s done.

I really was directed by Dr. Davis as to what tests he recommended. I met a vascular doctor that was amazing and very compassionate. I think the tests they do are top notch. I have brought them to the pain management doctors I met with recently. Check out the documentary recently done by Ken Burns recently on The Mayo Clinic. You will appreciate how it got started.

Thanks Joan, I looked her up and think I’ll give her a try!!

If you go, let her know I recommended her. Joan Walters. She has an amazing way of actual istening to you and working with you. I stayed committed and after about 3 months I started to see serious results. It has been truly amazing! And best part, no more drugs. My brain is finally not groggy . She will be your new best friend. Best of luck. Keep me posted please.

Thanks Joan

Hi Jewels, I just wanted to let you know how my appt today went with my doc. He is in touch with Dr. Davies, who admits EM leaves many people scratching their heads. We are going to try the amitriptyline/ketamine cream.
When my doctor called in the RX for the cream, he spoke with the pharmacist about my condition. He said her colleagues had two other potential recommendations - one is a topical naltrexone, and another is a topical nifedipine which is a calcium channel blocker. Her colleagues have limited exposure to EM but have used these creams very successfully with certain types of vascular and neurogenic peripheral nerve pain.
We decided that if the first cream doesn’t work, we’ll give the others a try.
Best of luck to you. I certainly wish I could be of more help!!

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Be cautious with nifedipine. It is one of the known drug-induced causes of EM, it can help, but also can make it much worse. Trying something like oral magnesium for a few weeks might be a good, harmless way to know if a calcium channel blocker will help before jumping to a strong topical CCB cream.

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HI. I just wanna telling you my experience (I try Mayo Clinic too). CBD is THE ONLY treatment right for my EM. Medical cannabis stop my non stop burning sensation and the inflammatory process. Also helping me to stop using a lot of medicines. May I can’t running agains as I used to do 4 years ago, but I can handle the condition living in the tropic
(Puerto Rico).

Just TRY!

A todos los que me leen. Hace 4 años de atleta elite pasé a ser paciente de EM. Utilicé todos los medicamentos que nos “ofrecen” NINGUNO detuvo mi ardor constante. Hace 1 año llevo utilizando CBD y he dejado la mayoría de los medicamentos. Solo uso magnesio y vitamina D. Quizás NUNCA pueda volver a ser una runner, pero al menos puedo vivir sin ardor en el Trópico.

Traten el cannabis medicinal, en mi caso el CBD o la flor Cherry Wine (Alta en CBD) me ha devuelto la vida.

I was diagnosed 8 years ago with EM, no known cause. I recently found an industrial hemp CBD salve that has really helped reduce my swelling and soothes the pain.
https://www.cannainfuzionscolorado.com/
I use the 1000 mg Soothing Salve. I have also used the tinctures with some help in sleeping.

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I’ve tried CBD (4 different brands) and never found relief. Medical marijuana is different, tho. I’m wondering which one you did, or both.
Thanks!

This is good news. I am also trying acupuncture and hoping for some relief. Do you know what meridian she is working on?

Shelby: I move to Puerto Rico from Utah only to continue medical marijuana treatments as well. I use hemp CBD oil (Pharma 500ml- online) and buy at the dispensary: Cherry Wine- flower HIGH in CBD and veryyyy low THC (vaporized it in micro doses 2 times at the day like a normal medical therapy).

Recently I discover another CBD flower that works better: Monte Sagrado. Robi Drako (an artist that won his cancer battle produce it in his farm and then growing for the Medical Patient). Is the best!!! But I don’t know if is available at the mainland dispensaries. I HOPE you can find it.

Be a medical cannabis patient was a toft decision at the beginning for me. I alway be agains to “any kind of drogs”- I used to be an elite athlete and catholic. You know something: I WAS WRONG…

Medical cannabis is the best think I can try. I know a lot of kids and people that worth their healthy to that effective treatments. My reumathologist approves this treatment for me (after see my body positive response)

TRYYYYY, please TRY.