I have recently been diagnosed at the Mayo Clinic and told to take aspirin along with a ketamine and amitriptyline cream. I am 27 years old and have been extremely healthy until December of 2020. On December 10, 2020, I developed optic neuritis in my left eye. I am still nearly blind eight months later, and the vision will not return. I have a history of pernio in my feet, but my EM symptoms cropped up in January of 2021 with terribly hot and burning feet with exercise/shower/walking.
I spent the last two weeks at the Mayo Clinic seeing neurologists, eye doctors, internal medicine, vascular, and dermatology. I had a host of blood tests, an EMG, a few MRI’s, and sweat tests. The doctors were not able to come up with any underlying diagnosis. In the small chance, anyone here has also had optic neuritis, I am saddened to hear it, but I would appreciate a response.
I am a PhD student and have had a lot of difficulties managing all my medical problems in the previous year. Nothing makes you appreciate health more than EM and eye issues. I joined this community for a positive outlet to discuss treatment options and maintaining a good attitude towards life.
I wish everyone the best,
Sorry to hear about your struggles Alex.
It sounds like you had an immunologic flare with optic neuritis first. Where you treated with steroids promptly, or did it take some time to get treated? Was it a prolonged course of steroids with other immunosuppressives added to help taper you off of steroids? I am wondering if the EM symptoms started after the steroids (if you received them). Do you feet ever get too cold (blue), vasoconstricted?
I also have immune-driven EM symptoms in my toes - post COVID19. At times, steroids have helped when an immune problem was obviously flaring, but it did not help vascular component in my feet much. I think the peripheral neuropathy that occurred was over by the time steroids were initially given, so thus did not help.
It does not sound you like you have tried much beyond aspirin. Certainly there are lots of other options medically that can be tried, typically 1 at a time for a few weeks/months to see if there is improvement in the EM symptoms. Hopefully there is plan to try you on those if the feet are really bothering you. If not, that is something you should advocate for. It does not need to be through Mayo - if you are descent sized city, there may be local docs to help out who are knowledgeable.
hang in there -
I appreciate the thorough response. I had three days of IV steroids followed by an Oral taper at the onset of optic neuritis. My feet weren’t bothering me very badly at the time, and the pain did not start for another few months following the steroid use.
I’m sorry you are having immunological problems as well, it’s no fun. The big dilemma I’m facing is whether to constantly take immunosuppressants. The doctors do not recommend it, but I am paralyzed by the thought of losing my right eye.
When it comes to my feet, I appreciate the advice. I will be an advocate for myself, and the aspirin/cream has not done anything yet. I’ve only been using them for about a week though.
So sorry to hear all that you have been through.
This certainly is a rough and painful battle.
Assuming being at Mayo Clinic that they have ruled out the most common cause of optic neuritis? Mainly MS and Lupus?
Not much is found with optic neuritis and EM unless an underlying autoimmune disease is of cause.
Did they test for Rheumatoid Arthritis? Optic neuritis and EM can be a symptom, even without having a positive test.
I’ve been tested for Rheumatoid arthritis along with lupus and MS. I’m doing a lumbar puncture to be certain, but my brain MRI was normal.
I’ve had a big Rheumatological workup with the only abnormality being a low C2 and C4.
I am sorry you are going through this, I also got diagnosed with EM at a young age and am through it now with the exception of some maintenance therapy. Coming from someone else in higher education (3rd year medical student), it can be difficult to manage something with very few definitive answers as we are used to being able to figure out at the post-grad level. However, approaching EM in a step-wise and thoughtful manner is the best first step. Do you know what the etiology of your optic neuritis was? This can provide further answers as to whether your EM could be autoimmune or inflammatory in nature. Aspirin and ketamine based creams can maybe help, but won’t tackle the issue. I recommend reading through the Dr. Jay Cohen articles I posted, printing them out, taking them to your primary care physician, filling them in on what’s going on/how distressing it is, and asking them to try things with you from the guide and research papers in a logical and stepwise manner. You more than likely will find things that will help. Stay positive and look forwards, not backwards.
Hearing your story gives me hope for my situation, but I am still sorry you had to deal with EM at a young age as well. Also, although I am new to this group, it appears everyone hears owes you a big thanks for your contributions given your activity here. Thank you.
I do not work in the medical field, so I pre-apologize for any misused terms. I do not know the etiology (cause) of my optic neuritis. Multiple rheumatologists have examined me and run a host of blood tests, but they have not found any rheumatological concerns (other than slightly below normal C3 and C4 levels). For now, neurologists do not think it is MS, but I am still having a lumbar puncture just to be safe. I have also been tested for NMO disease, another potential cause, but those blood tests have been normal (AQP4-IgG and MOG). Also, what do you mean by inflammatory by nature? Optic neuritis is the inflammation of my optic nerve, so is not this true by definition?
Overall, no doctors have been able to come up with a reason for my diagnosis, they are baffled. In addition, I have been struggling with pernio the last few winters and had a recent bout of pericarditis of the heart (albeit minor). Clearly, someone does not go from good health at 26 to all these problems at 27 randomly, but I have no answers. I spent two weeks at Mayo, from my perception considered the pinnacle of healthcare, and no one knows. I really have nowhere to go anymore.
I will start reading through the papers you have posted in this group, sincerest thanks.
I would try going the Functional Medicine Doctor route. My doctors, have seen multiple, all just want to throw pills at me without looking at the cause.
check for Lyme disease and associated infections- even if you have no memory of a tick bite
Probably the answer is yes - but did you have COVID19 antibody test to see if you had it in the past? Did you get the COVID19 vaccine prior to those symptoms or after?
I did do a covid antibody test before I had the vaccine, the results were negative. The symptoms also appeared before I got the vaccine in April/May.
My son who is 30 years old was diagnosed with EM at 29 and having been extremely healthy his entire life to include being a nationally ranked wrestler as a child and receiving multiple presidential achievement awards for athletics through elementary junior high and high school. Around October of 2019 he went on a hike and when he came back his feet had swelled up around 4 to 5 times the normal size and were very painful. I am only mentioning his athletic accomplishments to give an indication of where he was at physically. After the initial swelling of his feet the incidents were sporadic up until recently and now his feet are swollen and are remaining purple or red without returning to a normal color. If you have tried anything that has worked for you can you post here? We are currently at Mayo and will be getting his care plan tomorrow.
I wish you the best with you and your son, and you also have my deepest sympathies. I too was a competitive athlete in good shape until my EM arose. Since my diagnosis in August of 2021, I have been trying a variety of treatments listed on Dr. Cohen’s website: THE MEDICAL TREATMENT OF ERYTHROMELALGIA | MedicationSense.Com
I have tried aspirin, Cymbalta, Gabapentin, and amitriptyline, but I have not had any success in reducing my symptoms. The cream compound from the Mayo clinic has provided me mild relief.
All the best,
Thank you so much for your quick response! I am so sorry you have not gotten much relief. I personally have had several surgeries on my neck and a partial knee replacement and have found Voltaren gel to be a lifesaver because I refuse to take painkillers. I have not given it to my son so I don’t know how it would work on EM. He is VERY resistant to taking any medication whatsoever but I cant see how voltaren gel could hurt but you can certainly mention it to your PCP if you would like. Has your eyesight improved at all? Wish you well.
Thanks for your response as well. I’ll look into the gel, and my left eye is basically ruined. It is tough not to get angry when I don’t drink, smoke, exercise every day, and eat well yet terrible things still happen.
Hang in there with your son.
I am so sorry to hear about your eye. I completely understand your frustration. Albeit not for myself but as you can probably tell I am the definition of a helicopter mom and will do pretty much anything to help my kids LOL! Last night my mother had a very good idea that she shared with my son and I and I want to pass it on to you. My uncle was diagnosed with middle myeloma cancer about 4 years ago and was willing to partake in an experimental medication study that has resulted in him being cancer free and if it does not return by 10/22 his oncologist said he has beat the cancer completely. I don’t know if Mayo Clinic or any other hospitals are trying experimental medications or treatments for EM but my son despite having a very anti-medication mentality as I mentioned said that he would be more than willing to be a “guinea pig” as he put it and try pretty much anything. I am thinking that based on your and his age that you would be absolutely ideal candidates for trying things. If I find out about any studies for both EM and your eye I can pass them along if you would like. BTW if I get “over the top” as my son puts it and message you too much let me know I wont get offended LOL!
Your son is lucky to have you Feel free to message me anytime on this platform, there is a direct message feature! I would be happy to hear of anything you find.
Thanks Alex, I will definitely direct message you if I find anything on any studies. You really have such an incredibly great attitude for everything you are dealing with. Both of my kids have dealt with serious injuries and illnesses but I honestly think this one is the worst because there is no cure. I have to look at everything with optimism because having a negative attitude only makes things worse.