Hi All : ) Feeling confused about my newly diagnosed EM. I don't have the typical feet, legs, hands redness burning.. but I have foot, ankle and lower leg pain and overall leg weakness that has progressed over several years and is chronic. I went to a Neurologist on Friday and he thinks I have Peripheral neuropathy ?? Having
further tests... An EMA nerve testing on my legs in a week...and venous Doppler and blood flow test...more blood work. I also struggle with scalp burning and itching...hair loss and facial flushing that feels like I am burning up from head to toe and terrible night sweats and as I toss and turn and sweat and wake each night... it feels like my whole body is under attack... my Dermatologist who diagnosed EM sent all the tests that showed his diagnoses of EM to the Neurologist...the Neurologist said he know NOTHING about EM and said he never even heard of EM...HUM?? He said I should go back to dermatologist...I will give him credit for an honest answer...but what the heck?? The Neurologist only seemed interested in my legs?? Which I do appreciate... I am hoping when I follow up in a month that I can interest the Neurologist to want to learn more about EM to work with me??? If not...I may be looking for a new doctor?? OR Not?? I guess at the end of the day I am my own detective doctor...LOL!!! I do believe a healthy diet since I also have Celiac Disease and exercise helps keep inflammation down... it is going to take juggling way more than that to feel better....I can juggle : ) ...but it wouldn't it be SO nice to know what you need to juggle...ALL in good time I suppose...Life is a process : ) SO nice to be able to share the good.. the bad and the ugly with you ALL along with a sense of humor ; ) I know you can relate and isn't it great to know We are not alone : )) I am Hoping and PRAYING that the Xenon study discovers a huge break through about EM... giving us lots of Answers and a Cure!!! Amen : ))
Thanks for Listening!!!
i wanted to reply because although some of our stories are very different, I have had a slew of tests for over two years trying to find answers so I know how stressful and frustrating it can be! I think that the dermatologist is the right person to deal with the EM, would the dermatologist contact the Neurologist so that they can talk - or at least send his notes over so that your Neuro has more of a sense about the whole picture? I am not a doctor but if you are having weakness in your legs, it is a good idea to have the EMG studies/test with the Neuro. I hope that your insurance is covering this. Where do you live? Just curious, I am in NYC and it took a long time to get the EM understood here.
One thing which I shared in another post, is something my EM doc said to me just this past Friday. He told me that EM is not a diagnosis- it is a sign and symptom of something else. So again, I am not a doctor but you should have the EM doc think about whether your celiac issues could be part of the cause- so I hope you are having a whole medical work up to check for all possible underlying issues.
I joined these forums only a few months ago and I am so glad that I did. It helps to have people who understand what we are talking about.
Thank you so much for your reply!! I live near Pittsburgh, PA and I have family in NYC coincidently!! I imagine you have access to great doctors in the Big Apple!! Pittsburgh is very good for medical care and thank GOD I do have insurance...I have had so much testing going on over the last 7 months and very glad insurance has paid all but my copays!! Great advice thank you!! I see my Gastroenterologist in August and plan to ask him if he knows anything about EM and any possibilities that my CD is causing it. I am new to these forums...As I read through I am always so sorry to hear so many are suffering...but happy that we all have each other to collaborate with and share information!! Thank you for taking the time to reply...I really appreciate your understanding and insight!!!
Take good care!!
Jordy couldn't of said it any better! I don't even know why I am replying other than to emphasize what she has already said and to tell you I do understand your frustrations too. You are certainly not alone in this.
Just repeating Jordy.....
Dermatologist is great for treating EM especialy one who knew about it enough to diagnose it! The neurologist doesn't sound interested. I know it sounds funny but for this type problem you need an interested , curious Doctor to get the tests and treatments you need.
Secondly It is important you Dermatologist shares this info with your Neurologist so He can get the whole picture maybe even develop an interest after reading a bit more about your condition. I think If more doctors would pay attention to what your other doctors are seeing and doing and testing for.....I know run on sentence!!!! Any way If they would do that I think we could get the whole picture so much sooner than every one only doing there small specialized part. It is quite difficult to achieve this however.
I t is important that you get a complete once over looking for an underlying cause. Even if all of your tests come back normal and they can't find a reason keep up annual tests and never stop looking. Something must cause this. If not genetic I would think eventually some test results will pin point the culprit. It is very common for test results to come back normal and they say sorry nothing is wrong! No...something is wrong. Some conditions have a good 20% of test results show normal when truly you have that condition. Usually over the years it eventually shows up in blood work. Annual blood work for known EM causing conditions is important.
I am glad you are able to juggle when you need to :)
I appreciate and thank you for your helpful reply!! I agree with you whole heartedly that working with my Dermatologist with regards to my EM is probably best... you are absolutely right.... he diagnosed me so he knows the most about EM...he seems knowledgeable enough to refer me elsewhere if and when needed....and I feel confident in him. It took me over 8 years to get diagnosed with Celiac disease...and it still amazes me that lack of communication between doctors when you have multiple things going on that do impact one another...but if it is out of some doctor's "specialty" they don't look at the whole problem or whole person most of the time....Odd... its' like the right hand doesn't know what the left hand is doing in medicine ?? I agree that being persistent and getting labs done on regular basis helps eventually...because one day whatever is going will for certain rears its ugly face...that is what happened with me and Celiac disease... it took years of being sick off and on...and internal bleeding to finally get the diagnoses... then I knew I wasn't crazy...because for years before diagnosed with CD the doctors wanted to treat me for depression and chronic fatigue...they just wouldn't listen. And I never gave in and took the medicine...I knew there was nothing wrong with my head it was my stomach and intestines.. Good thing I know my body and my mind better than some of my docs do...LOL!!! I try to improve my health as much as I can through diet, supplementing and exercise...and I think I would feel a lot worse if I did not eat right or keep my body moving even though difficult through pain...I don't wish anything to be wrong with myself but isn't it funny when blood work comes back normal and you feel so lousy...you feel like you are crazy!! LOL!! Thank God I know better and eventually in All things... the truth prevails....
Thank you for caring and for your support!! I am here for you if you ever need to talk...You certainly are so kind to listen and share your wisdom with so many... so don't forget about your own needs as well : ))
Have a great day!! Thank you again!!!
About your thinning hair line. My mother experienced much the the same thing -- burning and tingling - before her hair thinned a bit, each time, a couple of times. (I didnt' tell her that it sounded a bit EM like at the time because I didn't want to scare her into thinking the feeling might stay -- lucky for her it didn't last). Anyway, she's still got enough hair on her head and looks lovely so try to put that worry out of your mind. My hair has gone from brunette to grey/white/blonde/a nice faded brown colour -- that looks overall blonde-ish in some lights. I look like I'm the older woman I am, with expensive highlights in my hair. Lucky, because I've been advised not to risk an allergic reaction by colouring it. (I must admit to a hankering for flaming red hair or something). So I have to let it go its natural way. Because it's now so light around the front hairline I can see my scalp clearly. I didn't like that at all and it was getting worse over time. So I had a fringe (bangs) cut a couple of months ago and it looks great. Instant soloution. No more visible scalp at the front. Except for a very small spot on the back of my head -- born with it according to my mum -- and I've never worried about it and people just don't notice it or they are too polite to mention it. LOL.
Thank you MIm for reaching out and offering your support. You are so kind.
I know what you mean about the depressed crazy diagnosis.!!!! It took me over 2 years to get any kind of diagnosis and the time prior to that I was sent to 3 different Shrinks for testing. All three times I came back normal. I wanted to get a ribbon after my 3rd test and where it to all of my appointments that said certifiably NOT crazy!
It was one of the hardest parts of this ...right up there with the pain. In fact it caused pain when they treated you as if you were crazy and didn't believe you. That would upset me and cause more flaring!!!! It is a rare thing to find a doctor that can say I don't know... I don't know but we are going to figure this out. Hang in there. Those are the words spoken to me by my current doctor. He made me cry when he told me that and if it were any other doctor that would of just confirmed their diagnosis of depression!!! Instead of the joy that was actually causing my tears!!!!
Thank you again . I am so happy you have found a good one too.
It is Jordy again! I wanted to add that the root cause of my EM is actually an eating disorder. One year ago ( I started recovery on 7/15/13), I had really taken my body to an awful place- my body catabolized itself and I weighed almost 30 pounds less than I do today. This is what triggered my EM- the dermatologist confirmed it last week since I have absolutely no other underlying issue. So again I know you will leave it to your gastro doc but maybe you are not getting all the nutrients you need because of the CD? Yes, you have weakness and so there may be something going on with your back and your Neuro can check this. But do let your gastro guy know that sometimes the EM can be triggered by nutritional neuropathy or just plain lack of nutrients.