My father in laws birthday is that weekend and I think we are taking him to lunch that Saturday. Waiting for him to confirm. Has anyone else locally responded as to whether they would like to meet as well? By the way, I also sent you a message!
I may be interested as well, But I'm not sure where this town center is... Is this a mall that is off of Butler Blvd? If so this may take me about 1 hr. as I would be coming from Palm Coast. Not sure about going as my anxtiey and depression may not allow it, But I would really like to try because I think it would do me some good to talk to local folks that are suffering from EM the same pain and talk... I might be able to contact the person in St. Augustine and there is another I think in Bunnell that may have some interest.
kb904 said:
My father in laws birthday is that weekend and I think we are taking him to lunch that Saturday. Waiting for him to confirm. Has anyone else locally responded as to whether they would like to meet as well? By the way, I also sent you a message!
That would be awesome if you could come! I think we are looking at Sunday Sept 2nd for lunch. St. Johns Town Center is the big outdoor shopping mall located off of Butler. If you could contact the person in St. Augustine, I will make contact with the lady from Ponte Vedra.
What time for lunch do you think would work best for you?
Really hoping that everyone who is interested can come. I think it would be great if we could be able to talk about this crazy disorder. Just knowing that there is someone out there who really knows what you are going through makes all the difference. Plus I think it would be interesting to exchange ideas that have worked for us, doctors and different flip flops/ sandels that we find comfortable. Please let me know if you will be able to make it.
jagmanss said:
I may be interested as well, But I'm not sure where this town center is... Is this a mall that is off of Butler Blvd? If so this may take me about 1 hr. as I would be coming from Palm Coast. Not sure about going as my anxtiey and depression may not allow it, But I would really like to try because I think it would do me some good to talk to local folks that are suffering from EM the same pain and talk... I might be able to contact the person in St. Augustine and there is another I think in Bunnell that may have some interest.
kb904 said:My father in laws birthday is that weekend and I think we are taking him to lunch that Saturday. Waiting for him to confirm. Has anyone else locally responded as to whether they would like to meet as well? By the way, I also sent you a message!
You know what! I'll be there, I need this....Sunday Sept 2nd for lunch at St. Johns Town Center works for me, Anytime for lunch is fine with me. I would think a good time might be around 1:00 and would give us all plenty of time to get there get acquainted and talk before during and after lunch. We just need a confirmed time and a place to meet once there.
I will contact the person in St. Augustine and see if she may want to go too, I talked to her some time ago before I was diagnosed and she had all but about given up like me and couldn't find a doctor to DX her, She was shocked to hear that somone in the area had EM too and am sure she could use some info. Hell! I'm shocked that there are this many of us in the area myself. It took me 2 yrs of searching to find out what was wrong and wish I knew back then that someone else in the area knew what Doctors at shands and Mayo to go to...
Glad this thread got started, It will help so many others here in Florida.
ruacorefan said:
That would be awesome if you could come! I think we are looking at Sunday Sept 2nd for lunch. St. Johns Town Center is the big outdoor shopping mall located off of Butler. If you could contact the person in St. Augustine, I will make contact with the lady from Ponte Vedra.What time for lunch do you think would work best for you?
Really hoping that everyone who is interested can come. I think it would be great if we could be able to talk about this crazy disorder. Just knowing that there is someone out there who really knows what you are going through makes all the difference. Plus I think it would be interesting to exchange ideas that have worked for us, doctors and different flip flops/ sandels that we find comfortable. Please let me know if you will be able to make it.
I called and talked to the person in St. Augustine and she is a definite yes for our local support group luncheon at a restaurant at the Town Center, I told her so far it is set for Sunday Sept 2nd and will contact her with further details as they develop. I also directed her to this site and thread, Not sure if she will join or post, But told her I Will keep her informed on the specifics.
So it looks like so far there are 4 of us going and if the person from Ponte Vedra is in we have 5.
That sounds fantastic!
That is awesome! I will let you know this week the restaurant we will be meeting at. I did get in touch with the lady from Ponte Vedra and unfortunately she has a prior engagement. She did ask that I let her know how it goes and if we have any other get togethers in the future, as she would like to attend. I will be bring some information that she has shared with me.
Looking forward to meeting everyone. If anyone else in the Florida would like to come, please get in contact with me. We would love to have you there!!
I hope you all have a good time at tommorrows lunch.. Saldy there is nobody close enough to me to meet so this website is fanatastic for talking to others who knows about EM.
Hi Jagmanss,
I'm not sure if you are still experiencing the severe ankle joint pain you mentioned, however, I hope to ask if it might be similar to something I've experienced. The ankle pain is spot on like you said, and extreme. At the same time, the surrounding area which may include the feet and lower legs felt what was similar to a Charley Horse x10. When it happens, often in the middle of the night, the ankles were always the worst of it, because the outside round ankle bone could not be 'flexed out' so to speak and the pain was excruciating. Does that sound at all similar to the ankle joint pain you'd get?
jagmanss said:
Unfortunately I have Primary EM, Dr. Rubin did not label it as one or the other in his notes and only diagnosed it as EM, But he did note that there is no family history and did extensive blood work up while I was at the mayo checking for any Autoimmune disease and all came back negative, So it's not secondary to anything.... It is worthwhile to note that I have very high arches and have had severe ankle joint pain in both feet along with the burning of EM...
Toll said:Just curious do you have Primary or secondary EM?
Thanks, Tollie
Hi KB904,
I saw your old discussion about possible key differences between some symptoms with EM and RSD and wondered if you were aware of any? Thank you!
kb904 said:
My issues began after a foot injury where A podiatrist put my foot in a boot for 3 weeks. When I took it out for a follow up visit, I couldn't move my ankle or toes at all and there was a discolored mass of veins at the injury site. He believed I had RSD and sent me to physical therapy which did not help. I started to experience sharp (knife stabbing) pains in that area and my leg and foot were very cold and then later became very hot only in the injury area. I couldn't walk and was in despair. He wanted to send me to some pain management place. My coworkers recommended I see an FSM (frequency specific microcurrent) practioner and I did. She worked with me 5 days a week for about 3 mos. I no longer felt that pain, slowly gained movement in my ankle and toes, and learned to walk again. With that said, I think I may have had RSD.
My EM symptoms came on gradually after all of this. They were different. My entire foot would turn bright red and swell now and go up my leg. It started in my injured foot first and slowly spread to the other foot. Heat really set my symptoms off. I have to be in a cool environment or I'll flare. One of the main differences is that I get relief by elevating my feet and cooling them with a fan. Walking or stress can trigger flare ups. I always crank the AC
on my feet in the car. I take a shower in a shower seat with my feet elevated. I sleep with my feet elevated and a fan blowing on them.
A good resource is the TEA website: http://www.erythromelalgia.org/Home.aspx . I would read through the website. There is also a brochure you can print and take to your doctor. Also, read all of Dr. Cohen's articles: http://medicationsense.com/erythromelalgia.html. I would print them and take those, too. He mentions different medications that have helped different people. Hope this helps.
Hi Arcticlava - in my opinion, “dis-eases” are just labels for different sets of symptoms and they are used in treatment based thinking. I have gone down the allopathic road, and had no success in curing anything. It wasn’t until I addressed the cause, that I found healing. All of the drugs and treatments were just masking the symptoms at best, in addition to making my already toxic body more acidic. With EM, our cells are burning… Think about it. What is our body made up of? Cells… 100 trillion cells, roughly. And two major fluids, the blood and the lymphatic system (our body’s sewer system). The problem is our sewer system is backed up! So our cells are sitting in this acid, corrosive waste just burning! With that said, I have been alkalizing, detoxifying and regenerating new and healthy cells. I have reversed so many symptoms, and am rebuilding my nervous and vascular system. This is the only true way to healing.
Hi Jagmanss,
I wondered if you still see Dr Devon Rubin at Mayo in Jacksonville? I'm way down in SWFL and in desperate need of a Dr who can help me with my EM. I am disabled from a combination of EM/Ray's/RSD and other nerve damage. I just saw on the Mayo FL page (http://www.mayoclinic.org/patient-visitor-guide/florida/billing-insurance/medicare) that they don't accept Medicare assignment. I wondered if you could comment at all on costs of your initial visit with Dr Rubin and whether or not you had private insurance/no insurance/medicare? Thank you kindly for any info you can offer!
jagmanss said:
Hi Libby,
I live on the east coast of Florida and have been recently diagnosed wiith EM on April 2nd 2012 by Dr. Devon Rubin in the Mayo Clinic of Jacksonville Florida.... He is Very, Very knowledgeable about EM and knows very well about the current studies being done as well as the Erythromelalgia Association and all current treatments.... Hope this helps.... My current Neurologist at Florida Health Care Plans of Florida is taking over and treating my symptoms and also has knowledge about EM But did not want to Diagnose me without conformation from the mayo is Dr Mary June Derbenwick.... She had said it's such a rare condition that she needed them to confirm it, But I found that the only person I know of that knows anything about it in this part of Florida so far is Dr. Devon Rubin.... Your results may vary on the West Coast of Florida. But keep this in mind, Living here In Florida there are very very few Docs that even heard of it... Just be aware of that...
BTW: My symptoms have not been helped at all so far with any treatment so far and am still in constant flare...
Best of luck to you..
I know this is a very old thread, but I got a lot of information from it and wondered if anyone has an update. I have an appointment with Dr. Russo at Shands on the 28th of May and Dr. Kennelly at the Mayo Clinic in Jacksonville, FL on July 7th. I’m aggressively trying to find a doctor that knows more than I do about EM. Unfortunately, after all my research I seem to be the one explaining it to all to them. I haven’t seen the specific doctors above so hopefully with the recommendations from this blog I have found the right doctors.
I live In Orlando, FL and I’d also love to hear of any doctors in this area. I’ve have driven 2 1/2 hours to and then another 2 1/2 from the Mayo Clinic several times in the last couple weeks. Any and all help is appreciated!!
Hi Shelly, a brief update:
After thousands of dollars spent for testing at Mayo Clinic Jacksonville, I walked away with some prescription foot cream and Gabapentin only to progressively get worse as time passed. I was told by the neurologist at Mayo there was nothing else they can do, and to work with my primary care doctor who put me on Effexor. I had also been prescribed Klonopin for the panic attacks that would occur. The burning, redness and swelling had spread to my knees, up my legs, arms and hands. The drugs weren’t even “treating” the symptoms any more. In my opinion, the doctors weren’t part of the solution. They do not focus on addressing the CAUSE…
Today I am pain free and fully functioning. I’ve been off the high dose of Gabapentin and the klonopin for many months now. I’ve been slowly tapering Effexor for months. It is a very challenging drug to taper. The withdrawal side effects of all these drugs have been horrendous. The klonopin was especially brutal, and I wound up in the ER while using what I thought was my doctor’s safe taper schedule. Be careful and read the side effects of these drugs before starting them. It’s not worth it to me.
It wasn’t until I addressed the CAUSE that my symptoms started disappearing! Doctors TREAT the symptoms only… The solution: Alkalizing, detoxifying and regenerating new, healthy cells… It calls for a complete lifestyle change, especially the food you eat. Feel free to message me if you are interested in this path.
Many blessings to you on your journey back to health. xx
Hi kb904,
I am very interested in getting more information about the nutrition plan that you have had such success with. Would it be enough to just follow Dr. Morse's book or are there other essential resources?
Thank you for any info you can share :)
kb904 said:
Hi Shelly, a brief update:
After thousands of dollars spent for testing at Mayo Clinic Jacksonville, I walked away with some prescription foot cream and Gabapentin only to progressively get worse as time passed. I was told by the neurologist at Mayo there was nothing else they can do, and to work with my primary care doctor who put me on Effexor. I had also been prescribed Klonopin for the panic attacks that would occur. The burning, redness and swelling had spread to my knees, up my legs, arms and hands. The drugs weren't even "treating" the symptoms any more. In my opinion, the doctors weren't part of the solution. They do not focus on addressing the CAUSE....
Today I am pain free and fully functioning. I've been off the high dose of Gabapentin and the klonopin for many months now. I've been slowly tapering Effexor for months. It is a very challenging drug to taper. The withdrawal side effects of all these drugs have been horrendous. The klonopin was especially brutal, and I wound up in the ER while using what I thought was my doctor's safe taper schedule. Be careful and read the side effects of these drugs before starting them. It's not worth it to me.
It wasn't until I addressed the CAUSE that my symptoms started disappearing! Doctors TREAT the symptoms only... The solution: Alkalizing, detoxifying and regenerating new, healthy cells... It calls for a complete lifestyle change, especially the food you eat. Feel free to message me if you are interested in this path.
Many blessings to you on your journey back to health. xx
Hi nwgirl, I would be more than happy to share what I know with you. I would start by buying the book and getting educated on raw foods and herbs used for detoxification/cellular regeneration. Your diet will the the # 1 key to success! You will want to determine your glandular and genetic weaknesses, and work on strengthening them. This can be done by a health questionnaire and an iris analysis. You will use tissue specific herbs throughout this process. Message me and we can talk in more detail! Blessings.
NWgirl, you do not need to "buy the book" to follow an alkaline diet. Here are some links that will help demystify this type of diet for you:
http://www.fredericpatenaude.com/blog/?p=1942
http://www.webmd.com/diet/alkaline-diets
Kb904, I am glad you are feeling better. Eating healthy always makes sense, as long as any significant dietary changes are made with the approval of one's medical team. That being said, promoting particular products is prohibited on this website, as are requests for members to message you privately regarding particular books or products.
Thank you for the links Madere!
Best wishes
Madere (dancermom) said:
NWgirl, you do not need to "buy the book" to follow an alkaline diet. Here are some links that will help demystify this type of diet for you:
http://www.fredericpatenaude.com/blog/?p=1942
http://www.webmd.com/diet/alkaline-diets
Kb904, I am glad you are feeling better. Eating healthy always makes sense, as long as any significant dietary changes are made with the approval of one's medical team. That being said, promoting particular products is prohibited on this website, as are requests for members to message you privately regarding particular books or products.
Any answers to Doc here in Florida? Also anyone having results from alkaline diet?