Em

Thank you Tizzy. I know what you mean about taking so many selfies just trying to capture the redness. If you catch my photo gallery before I have had the chance to delete the 50 photos that didn't work you might consider me quite vain with all of the pictures of myself!

I have tried all of those meds you have mentioned dkel9307 but one by one. I have never tried them together. My doctor never wanted me to try more than one at a time going with the theory that we wouldn't know what was actually doing the trick. I am going to ask at my next appointment about trying some of the combinations of meds I have read have helped others here.



Tizzy said:

Yep, thats nice and red- it is often hard to get the facial redness on a photo. I had to run around takin selfies for ages. What gorgeously green eyes you have,they really are the star of photo-fabulosity !

Hi; just got back from the ER.. They had to give me Percocet for the pain as we sat there, watching the veins freaking out in my feet while they were changing color from red to violet-red..

This whole thing could've been avoided if the doctor covering for my doctor had written me a script for Percocet YESTERDAY.. He said he "didn't want to change my pain regimen" and wouldn't even see me to write the script. Also, he knows FULL WELL the pain I'm in as he's the first one I saw about my feet back on April 9th.. My doctor WILL be hearing about this from me..

I take the low dose aspirin daily, I was using lidocaine patches, but they seemed to make the spasming worse. I also take 400 mg Magnesium as was suggested.. My Rheumatologist is talking to my insurance company about getting me sent to Boston for treatment as there's really no one here who knows about this disorder..

As for earlier, I apologize: I was in so much pain and was completely freaked out by the "dead foot" thing.. Is this common?

You said the dr did a test for Lupus and it came back negative. i have Cutaneous Lupus and it has never shown up in my blood work. i had to have a biopsy to get a diagnosis, so you might want to keep that in mind. I kept telling them I had Lupus for 2 years before I got an actual diagnosis. It can be as evasive as EM and I have both, along with a lot of other health issues. I do take 81 mg aspirin for it. i can't take any higher dosage because of having gout. Topamax is something I am on for the EM. I have lost the feeling in my ears and throat due Lupus we are guessing. I never know when I have a sore throat or ear ache. Which in one way is good, but I had a bulging eardrum this winter and had no clue and could have lost my hearing. I would do more testing on the Lupus just to be sure!! Good Luck!!!

SAB said:

Grabbing these pdf's as I'm having a REALLY bad today myself..

I'm glad we took photos showing what I was going through for a 2 week period..

By the way: I had the rash on my face as well, and we took photos of it and my feet.. My face felt VERY warm to the touch, and it was also on my neck, chest, arms, and legs.. The ER doctor thought I perhaps had Lupus or Medication induced Lupus, but thankfully the test was negative.. We did find the EM can cause a malar rash as well, so we took that as the reason for the rash..

I agree with Rosebud. Just because a test came back negative doesn't rule it out. It doesn't by any means mean you do have it either! As rosebud said I would continue to be tested periodically as in many autoimmune conditions the tests don't always show positive rightaway . sometimes it takes a few years to show up in your blood work , long after your symptoms have started.

That eardrum sounds terrible Rosebud. Do they know what caused your bulging ear drum? If you couldn't feel it how was it finally found?

Take care,

Alina
Rosebud said:

You said the dr did a test for Lupus and it came back negative. i have Cutaneous Lupus and it has never shown up in my blood work. i had to have a biopsy to get a diagnosis, so you might want to keep that in mind. I kept telling them I had Lupus for 2 years before I got an actual diagnosis. It can be as evasive as EM and I have both, along with a lot of other health issues. I do take 81 mg aspirin for it. i can't take any higher dosage because of having gout. Topamax is something I am on for the EM. I have lost the feeling in my ears and throat due Lupus we are guessing. I never know when I have a sore throat or ear ache. Which in one way is good, but I had a bulging eardrum this winter and had no clue and could have lost my hearing. I would do more testing on the Lupus just to be sure!! Good Luck!!!

SAB said:

Grabbing these pdf's as I'm having a REALLY bad today myself..

I'm glad we took photos showing what I was going through for a 2 week period..

By the way: I had the rash on my face as well, and we took photos of it and my feet.. My face felt VERY warm to the touch, and it was also on my neck, chest, arms, and legs.. The ER doctor thought I perhaps had Lupus or Medication induced Lupus, but thankfully the test was negative.. We did find the EM can cause a malar rash as well, so we took that as the reason for the rash..

Alina, I was at the dr for a regular check up and she looked in my ears and found it. Turned out I also had strep throat also. I knew I hadn't been feeling well, but with my health thats nothing new. I had contributed all the extra stress I was under to it. Before it was over I ended up with pneumonia. Took 3 different antibiotics and and shots and 2 rounds of steroids to knock it out of me. I had a bad throat at least twice more after that and didn't know it. I have to be careful drinking hot liquids because my mouth can't feel it. i have to test things with my lips. The dr just guesses the Lupus has killed the nerve endings. My nerve endings are messed up in my arm, so they contribute that to Lupus. My face gets the hot burning sensations like my feet though, so now i do wonder if its related to EM or both. Just learning to deal with things as they come.

Alina Delp said:

I agree with Rosebud. Just because a test came back negative doesn't rule it out. It doesn't by any means mean you do have it either! As rosebud said I would continue to be tested periodically as in many autoimmune conditions the tests don't always show positive rightaway . sometimes it takes a few years to show up in your blood work , long after your symptoms have started.

That eardrum sounds terrible Rosebud. Do they know what caused your bulging ear drum? If you couldn't feel it how was it finally found?

Take care,

Alina
Rosebud said:

You said the dr did a test for Lupus and it came back negative. i have Cutaneous Lupus and it has never shown up in my blood work. i had to have a biopsy to get a diagnosis, so you might want to keep that in mind. I kept telling them I had Lupus for 2 years before I got an actual diagnosis. It can be as evasive as EM and I have both, along with a lot of other health issues. I do take 81 mg aspirin for it. i can't take any higher dosage because of having gout. Topamax is something I am on for the EM. I have lost the feeling in my ears and throat due Lupus we are guessing. I never know when I have a sore throat or ear ache. Which in one way is good, but I had a bulging eardrum this winter and had no clue and could have lost my hearing. I would do more testing on the Lupus just to be sure!! Good Luck!!!

SAB said:

Grabbing these pdf's as I'm having a REALLY bad today myself..

I'm glad we took photos showing what I was going through for a 2 week period..

By the way: I had the rash on my face as well, and we took photos of it and my feet.. My face felt VERY warm to the touch, and it was also on my neck, chest, arms, and legs.. The ER doctor thought I perhaps had Lupus or Medication induced Lupus, but thankfully the test was negative.. We did find the EM can cause a malar rash as well, so we took that as the reason for the rash..

Yes, Rosebud; the blood test came back negative, but I will definitely keep what you said about the biopsy in mind if we can't figure out what's going on. Dr. Krause is referring me to his friend, the Super Specialist at Harvard, as well as having the vestibular work up at Mass Eye & Ear to see if they can determine if I have Meniere's or Autoimmune Inner Ear Disease.. We are going to get to the bottom of this! In the mean time, We've added Atenolol 25 mg's to see if that can help with the vessel spasming: you could see them just going crazy.. Has anyone tried Atenolol for this?

Rosebud said:

You said the dr did a test for Lupus and it came back negative. i have Cutaneous Lupus and it has never shown up in my blood work. i had to have a biopsy to get a diagnosis, so you might want to keep that in mind. I kept telling them I had Lupus for 2 years before I got an actual diagnosis. It can be as evasive as EM and I have both, along with a lot of other health issues. I do take 81 mg aspirin for it. i can't take any higher dosage because of having gout. Topamax is something I am on for the EM. I have lost the feeling in my ears and throat due Lupus we are guessing. I never know when I have a sore throat or ear ache. Which in one way is good, but I had a bulging eardrum this winter and had no clue and could have lost my hearing. I would do more testing on the Lupus just to be sure!! Good Luck!!!

SAB said:

Grabbing these pdf's as I'm having a REALLY bad today myself..

I'm glad we took photos showing what I was going through for a 2 week period..

By the way: I had the rash on my face as well, and we took photos of it and my feet.. My face felt VERY warm to the touch, and it was also on my neck, chest, arms, and legs.. The ER doctor thought I perhaps had Lupus or Medication induced Lupus, but thankfully the test was negative.. We did find the EM can cause a malar rash as well, so we took that as the reason for the rash..

Dear Louise,

Good news that you are on aspirin and topiramax - two vasodilators. . I take Maxalt (a triptan - migraine med) for facial flaring - helps take the pain out of the scalding. I have taken the antiepileptic drug topiramate (Topamax) , which is also migraine prophylactic,so I do hope its helping you. I also get severe throat flares - my throat feels swollen and scalded ,which is affecting voice - im so sorry you have this too.

Thats the massive problem with EM it doesnt show in any blood tests or vascular /neurological tests. Dermatologically will show in a biopsy as a heat allergy - but will be diagnosed as chronic urticaria. EM symptoms do show in temperature regulation studies/.laserDopplerflowmetry perfusion imaging- these are scarcely performed

Have you been to a Dr as yet? - I couldnt tell from the threads

Sending you positive energy

God bless

mads

Hi rosebud. Thank you for answering my questions. I was reading up on lupus and the facial rash it may cause.and I can see how it would be quite difficult to tell the difference between lupus and EM causing your burning face. I see the lupus rash can burn and can be caused by heat amongst other things. I guess I might try cooling your face with a fan or cool cloth and if you get immediate relief from that it is most likely the EM. I don't know for sure because I don't have the lupus rashes ( I don't think!) So I can just go by what I have read. I do have the burning face but in my case I am almost positive it is EM and not a lupus rash.

I hope you can keep your stress down so as to minimize your symptoms the best you can. I know it is difficult because the symptoms themselves are what causes most of the stress!!!!!

Take care,

Alina