Hi everyone, and thank you to those who gave me a warm welcome on my page. I'm still trying to learn how the site works, so apologies if this is in the wrong place!
I have been getting flushing and burning in my face, ears, hands and feet for about two years. I first noticed it after I had an episode of altered sensation in my right side which, after two years of uncertainty and fighting, has finally led to a diagnosis of multiple sclerosis. My neurologist said that these flushing and burning symptoms are not typical of MS and referred me to the National Hospital for Neurology in London for a range of autonomic nervous system testing. Those test revealed that I have some problems managing my blood pressure but did not show any major problems with my peripheral neuropathy. I described my symptoms to someone on the MS Society forum who experiences the same thing. She said her neurologist thought it was eryhthromelalgia, secondary to MS. I plugged that into google and found pictures that could be me - that's also what brought me here.
I do not get swelling or blistering. The flushing and burning sensations I get seem mild compared to some of the pictures on here. But I still wonder if it is erythromelalgia. How can I get this confirmed? What type of doctor confirmed your diagnoses? There are some triggers I know bring it on, like drinking wine, eating a hot meal, moving from hot/cold or vice versa, stress, being upset etc. But sometimes it happens for no apparent reason. It is most common in my face (and ears). It's almost always both sides at the same time (which is why my neurologist does not think it is related to MS). The flushing is really bright red, and sharply demarcated. I can trace the line of where it ends without looking in a mirror. When it happens in my hands you can see the line moving down my fingers and across my hand.
Can I post some pictures on this site and get your comments on whether it looks like erythromelalgia?
Thank you for your welcome so far. I look forward to getting to know you better.
Hi Mandy, I am new here also. Just found this site last night. I could have written the very same words you just wrote. I have MS and this is the third flare I have had with em in the last year & a half.. Until last night I didn't know anything about this disease except that my DR. said that I had it. He explained nothing about it and I didn't know if it was serious or not. To be perfectly honest, I'm having a pretty hard time digesting all the information I'm getting right now. I too, look forward to getting to know you and all the others on this site.
Hi Kat, thanks for your reply. It can all be a bit overwhelming, can't it? Sites like this are a great place for finding information and friendship. Was it your neurologist who said you have em? Mine doesn't seem to have heard of it! Good luck with everything.
Hi Mandy, no it wasn't my neurologist that diagnosed it, it was my pcp who has been my doc for the last 25 yrs. When I told Dr. Archer, my neuro, about what Dr. Hal had said, I asked him if he knew what it was, he just lowered his head and said yes, he knew what it was. Neither one of them explained anything about it to me and I didn't know if it was something real bad or not. And, by the way, these two doctors are both very fine physicians and are at the top in their fields. I don't know if I said that right or not but you know what I mean. Now I think neither one of them didn't want me to know how bad this can really be. Just a thought. Don't know for sure.
Hi… I am notba doctors just a patient living with EM but the description you wrote could’ve been written about me. I was tested for ms before my diagnosis but thankfully was given the all clear. I do still wonder about the reasons I lose my balance sometimes, find it difficult to walk in straight lines as always seem to veer slightly to the left (this feels like a balance problem too) I often bump into things too… I don’t think that’s a symptom of EM but not sure why it happens.? I wish you both lots of healthy days ahead.
Mandy, It sure sounds like EM to me. Some of the photos on the site are very typical of EM and some are not typical unless you soak your feet in cold water and develop ulcers on the feet. People don't get the ulcers on the face since you can't really soak your face long in cold water. Some people with facial EM follow protocol for avoiding the skin care products, supplements and meds that cause facial flushing in people with Rosacea, although it's not the same disorder. Some people beleive their facial EM worsened dramatically after using the medication, Accutane.
When EM is secondary to another disorder, like MS, there is no test for it because it's a part of your MS, though supposedly a rare manifestation of MS. But EM behaves much the same way whether it's the inherited type or the secondary type.
I think there may be something different you are doing than others, when posting messages. I receive an e-mail notice every time you post and that doesn't happen when anyone else posts unless it's a discussion I'm participating in. You may want to ask a moderator what is going on so you know your options. I'm just now learning how to use this site too.
Me too Laura! Everyone in my family with EM has the problems with walking and we've been testing negative for MS for 10-15 yrs. I'm having another EMG today. I had an aunt who had MS. I have found that I have odd reactions to many different kinds of meds and some making the walking problem far worse and must avoid them.Seems to be the ones that use the P-450 enzyme CYP2D6 for metabolism but my tests for a problem with that were inconclusive.
We also have many other symptoms that are unexplained and have negative autoimmune tests. One cousin is diagnosed with POTS, but I haven't been able to find a local electrocardiologist to test me and don't particularly want to travel to OH or TN for that.
lauraflora1 said:
I do still wonder about the reasons I lose my balance sometimes, find it difficult to walk in straight lines as always seem to veer slightly to the left (this feels like a balance problem too) I often bump into things too... I don't think that's a symptom of EM but not sure why it happens.?
Hi Mandy, you are probably right that you have EM. Thank goodness for the internet. People really have to be pro active when it comes to their health. It seems like I heard that there are more diseases out there that doctors aren't aware of than actually diseases they know about & have been trained to diagnose.
I've had the flushing in the face & ears off & on too. But one thing I wanted to suggest is that you double check that it isn't a side effect to any meds you are taking because I get terrible flushing when I take Elavil(sp?)/amitriptyline.
I think we got an email notifivation about this discussion because another moderator sent out one to tell members to check it out... This occasionaly happens, not sure that its anything that Mandy did.
I have been spending lots of sleepless nights trying to find information about this but haven't read anything about balance problems... thats where support groups are invaluable esp with something so rare that many doctors don't know anthing about..!!
Kentuckian said:
I think there may be something different you are doing than others, when posting messages. I receive an e-mail notice every time you post and that doesn't happen when anyone else posts unless it's a discussion I'm participating in. You may want to ask a moderator what is going on so you know your options. I'm just now learning how to use this site too.
There is a doctor in germany that will do genetic testing to see if it a gene mutation that is causing em. I have found no
medical center in the USA that is willing to do any testing for em because it is so rare. pharmacy companys will not spend money for research.because there is no return on there money.
I also am grateful for this web sight.I also have trouble with stumbling sometimes when walking too.I was also told I didn't have MS.My gp told me that EM was just a symptom of something else not a disease!!So from now on I won't be asking him any questions about EM because he clearly doesn't have a clue!! I will be going back to my Rheumatoligist in March who diagnosed me.I will get my info from her only.I am also new to this sight and the people here have great information and are very helpful if you have questions.Welcome.
Hi there~ It sounds like Em to me too. I think about half the people +/- were told or initially though to have MS. I was diagnosed with it too. I had/have poor balance, and stumble too. And, as far as your episode of an odd tingling sensation in your body, I have had those too. Along with leg cramping, soreness in my main muscle groups. I think, although I'm not 100% sure of the percentage, that 18% of people with EM, have it systematically in their organs throughout their bodies. Which causes shortness of breath on the Diaphram, Kidney issuses, liver, and lung issues, all relating to the small blood vessels that surround those organs, which could be why we(people with EM) have syptoms that are similar to MS. I wrote DETAILED notes of what I could feel my body doing and took them in to my doctor, and several other specialists, because I believe there is a single common thread that links us all, if we could figure out what that is, perhaps we would be able to more successfully isolate a treatment. I would love to see the photos, and give comments~ Have a great day, Heidi
I have had balance issues too!!! bumping into walls, around a corner, etc. hitting the dinner table with my thighs, and just stumbling over air~~ I posted a more detailed response below, for Mandy C. lauraflora1 said:
I think we got an email notifivation about this discussion because another moderator sent out one to tell members to check it out... This occasionaly happens, not sure that its anything that Mandy did.
I have been spending lots of sleepless nights trying to find information about this but haven't read anything about balance problems... thats where support groups are invaluable esp with something so rare that many doctors don't know anthing about..!!
Kentuckian said:
I think there may be something different you are doing than others, when posting messages. I receive an e-mail notice every time you post and that doesn't happen when anyone else posts unless it's a discussion I'm participating in. You may want to ask a moderator what is going on so you know your options. I'm just now learning how to use this site too.
Thanks everyone for your input. It's really helpful to talk to people with similar experiences.
As far as the MS goes, that's been two years of tests and scans and taking copious notes about my symptoms. The diagnostic criteria are strict, and my diagnosis is based on MRI scans showing lesions in my brain and spinal cord, and evidence of inflammation also found in my spinal fluid. It's really interesting to learn that there seems to be such a strong link between MS and EM, or at least between the kind of symptoms they cause. I will definitely discuss this further with my autonomic specialist - however I don't have another appointment until November!! I had to wait 10 months for my initial appointment with him, then a further 4 months before being admitted for tests! I think I will write a letter asking for answers to specific questions, or for an earlier clinic date to discuss them.
Can I ask if anyone else suffers from fatigue? Is that something that is linked with EM?
I hadva year of tests including MRI scans of spin and brain plus lots of electro type testing before being given the all clear but was told that sometimes lesions don’t always show up straight away… I have a cousin with ms and a blood disorder too but can’t remember which one.
I am always fatigued and also pick up viruses and infections easily… Not sure if its linked or just coincidence that i have low immunity…!
I have had balance issues too!!! bumping into walls, around a corner, etc. hitting the dinner table with my thighs, and just stumbling over air~~ I posted a more detailed response below, for Mandy C. lauraflora1 said:
I think we got an email notifivation about this discussion because another moderator sent out one to tell members to check it out... This occasionaly happens, not sure that its anything that Mandy did.
I have been spending lots of sleepless nights trying to find information about this but haven't read anything about balance problems... thats where support groups are invaluable esp with something so rare that many doctors don't know anthing about..!!
Kentuckian said:
I think there may be something different you are doing than others, when posting messages. I receive an e-mail notice every time you post and that doesn't happen when anyone else posts unless it's a discussion I'm participating in. You may want to ask a moderator what is going on so you know your options. I'm just now learning how to use this site too.
After seeing various consultants in different fields I finally asked my doctor to refer me to Professor Carol Black at the Royal Free in London. I told her how I felt and had various tests done and she confirmed that I had EM. I felt so much better just knowing what was wrong with me. I was offered different drugs and treatments but did not go down that route and I always suffer from side effects. I deal with it myself and thank goodness I do not suffer more than I do. Good luck. Lyn Cape Town
My testing and exam with the neuro today resulted in being diagnosed with a small fiber peripheral neuropathy in the feet and also a large fiber neuropathy too (peroneal). He said it would cause my foot drop, stumbling and that my feet wouldn't feel the ground as it should. Also causes the numbness I've developed on top of the feet this year (can't always feel a fan blowing on them). However it does not explain my depth perception problem that causes me to go through spells of bumping into the wall when trying to walk down a hallway. Like you, I wish I understood it all better. I know EM can cause the small fiber neuropathy but not so sure about the rest. The doc doesn't think EM causes the rest. He thinks it's from having crossed my legs when sitting in years past.
Yes! It was diagnosed as Fibromyalgia, but I also have pain all over. Over the years I've learned I have osteoarthritis (firs suspected by a doc in my 20's) and very prone to tendonitis. Have some sublaxations and a few dislocations also and I'm to be evaluated by a geneticist in March who specializes in Ehlers-Danlos Syndrome and other HDCT's(Heritable Disorders of Connective Tissue). MS is also suspected of being prevelant among people with EDS. But I've never heard of EM specifically being connected to EDS.
I think the autonomic dysfunction, including dehydration, common with EM could cause fatigue? And severe pain is fatiguing in itself.
mandy_c said:
Can I ask if anyone else suffers from fatigue? Is that something that is linked with EM?
Cheryl, I'm surprised your Rheumatologist was able to diagnosis you. The practice I was seeing for my Fibromyalgia didn't have a clue as to what was going on with me. I'm sorry your gp told you it wasn't disease. Regardless of what name it is called, a disease, or a pain syndrome you are still experiencing disabling symptoms that change your life dramatically.
It makes me mad that those of us who suffer from a rare medical condition are not usually supported or helped much from the medical community. But boy if we were given a diagnosis of say "cancer" (I could also list all kinds of other medical diagnoses) we would have all kinds of understanding & support. I'm not minimizing other illnesses but it sure seems like doctors minimize what we are experiencing.
crazygrandma said:
I also am grateful for this web sight.I also have trouble with stumbling sometimes when walking too.I was also told I didn't have MS.My gp told me that EM was just a symptom of something else not a disease!!So from now on I won't be asking him any questions about EM because he clearly doesn't have a clue!! I will be going back to my Rheumatoligist in March who diagnosed me.I will get my info from her only.I am also new to this sight and the people here have great information and are very helpful if you have questions.Welcome.