Hi mads…thank you for the warm welcome! I have several disorders that are severe too. I’m hoping this one isn’t like that.
I hope you find some relief and soon!
Patricia
So there's an actual test for the gene? Wow! I think I'll ask them to do it if they can.. I was told I may have to go all the way to Boston for testing; I live in Maine.. Man, this is going to be rough trying to get a grip on, I think, but I'm ready; it's not going to keep me down!
I'm using the lidocaine patches on my feet right now; oh my word, I LOVE them! I will be following your progress with the IV lidocaine, wishing you good luck, and cheering you on all the way..
Best wishes..
S.
Hi This is my first post. Interesting that you talk about Sodium Channel Blockers. I was just recently diagnosed by one of my doctors - I have all the symptoms but mine EM may be secondary to a long standing eating disorder, I am in my late 50s and I had a very bad last 5 years with anorexia and lost feeling in my feet first in August 2012. No one understood and throught it was circulatory. The numbness turned to burning pain in my feet -soles, heels and toes on July 10th 2013. So I am only 10 months in. My doctor thinks that somehow my chronic LOW SODIUM has damaged my sodium voltage channels and thus has started EM.
I have been offered the lidacaine patches. not IV.
I am sorry that the EM is so widespread for you- but I am glad this new treatment is giving you at least some improvement
God Bless You!
Jordy
Really glad you’re not letting this drag you down… Yes I was tested in London so had to tracel for hours on a coach in middle of summer for some of the testing but it was definitely worth it. Although I now know I don’t carry the EM gene it doesn’t stop all the worry because there is a chance that I could’ve passed on my primary condition. I’ve recently been dx with MS so this may be the primary condition that caused the EM… Keep on staying positive…!
SAB said:
So there’s an actual test for the gene? Wow! I think I’ll ask them to do it if they can… I was told I may have to go all the way to Boston for testing; I live in Maine… Man, this is going to be rough trying to get a grip on, I think, but I’m ready; it’s not going to keep me down!
Hi Folks, I am confused as to the diagnostic terms, Primary - gene mutation, secondary caused by an underlying condition , and as my Daughter has no gene mutation and so much blood work done and with nothing showing up then She has idiopathic EM - No apparent underlying medical cause.
I am also interested in the differentiation; I want to know if I have the gene for my son's sake.. On a side note, thank you all for the knowledge you've shared with me in the short time I've been here: I want you all to know how much I appreciate you and I'm so glad to have found you.. :)
Davipot said:
Hi Folks, I am confused as to the diagnostic terms, Primary - gene mutation, secondary caused by an underlying condition , and as my Daughter has no gene mutation and so much blood work done and with nothing showing up then She has idiopathic EM - No apparent underlying medical cause.
Low sodium can irritate this? That gives me something to think about.. I was diagnosed as having Meniere's and I was put on a low sodium diet: could I have attributed to this disorder by eating low sodium?
Jordy516 said:
Hi This is my first post. Interesting that you talk about Sodium Channel Blockers. I was just recently diagnosed by one of my doctors - I have all the symptoms but mine EM may be secondary to a long standing eating disorder, I am in my late 50s and I had a very bad last 5 years with anorexia and lost feeling in my feet first in August 2012. No one understood and throught it was circulatory. The numbness turned to burning pain in my feet -soles, heels and toes on July 10th 2013. So I am only 10 months in. My doctor thinks that somehow my chronic LOW SODIUM has damaged my sodium voltage channels and thus has started EM.
I have been offered the lidacaine patches. not IV.
I am sorry that the EM is so widespread for you- but I am glad this new treatment is giving you at least some improvement
God Bless You!
Jordy
To my understanding Primary is caused by genetics / gene mutation. It stands alone with no other condition responsible for the EM. Then you have secondary caused by many things from Meds ,Autoimmune, Neuropathy, Myeloproliferative disorders amongst others. It can be very difficult to find the secondary cause because there are so many things that can cause it and often you can Have the EM symptoms a few years before the underlying condition shows up. One more difficulty is the fact that the tests for theses many underlying conditions are never a hundred percent so even though you may be symptomatic for an underlying condition your test results could still be inaccurate and indicate you don't have said condition. I know it sounds daunting! My Rheumatologist informed me that as much as 20% of people with rheumatologic disorders have negative test results.
Finding out if you have the genetic form or not is helpful in that you have to keep looking regularly for an underlying cause if it's not genetic. There is no cure for EM but if you have a secondary cause and can find and treat it you could completely rid yourself of EM through treatment of what is causing it! It sounds crazy to hope you have another health condition but if it is treatable and through treatment could get rid of EM I will take it!
If you Have idiopathic EM and have had full genetic testing You are likely to actually have some secondary reason yet to be found.
I hope this helps.
Davipot said:
Hi Folks, I am confused as to the diagnostic terms, Primary - gene mutation, secondary caused by an underlying condition , and as my Daughter has no gene mutation and so much blood work done and with nothing showing up then She has idiopathic EM - No apparent underlying medical cause.
I was recently using the lidocaine 5% patches and stopped: first off, because my insurance company wouldn't pay for them, and secondly to see if they really worked.. I didn't really notice too much difference in my symptoms without them.. I know they're different methods, and I'll keep the IV treatment in mind for somewhere down the line, should it become necessary..
Has anyone had any luck with beta blockers, like Inderal or Atenolol? I'm to begin a low dose of Atenolol this morning to see if I can tolerate that better than I did the Inderal.. I have to try something to stop this dumb spasming!!
Wishing everyone a better morning and I'm oh so very glad to have found you all! :)
S.
Hi SAB,
are you spasming in your legs or body?. I get body tremors and spasms with EM - i always have.They terrified me at first- now i just go wiih them. Stress, fighting them just exacerbates. 'Spasms' can occur in sistemic neuropathic disorders .Alternatively could be a side effect of any drugs you take. We dont know enough about EM to pinpoint every single symptom - as a syndrome - so many 'symptoms' are not known or just misunderstood. Several EM'ers have shared that they suffer spasms or tremors- so whilst rare, not uncommon.. Betablockers are also given for spasms- i do hope they help
Wishing you a 'comfortable' night
God bless
mads .
Mads:
Spasming in the feet and legs: you can see the veins just rising right up! Makes my legs shake they hurt so bad..
I started Atenolol today, and it's the first semi-comfortable day I've had since April 6th! HOORAH! I only had to take half a pain pill so far today, but they usually start up again at night, so I'll be anxious to see if the relief still goes on! Cross your fingers for me! :)
S.
Oh SAB, Thats wonderful news...... wonderful!
Im crossing my fingers, my toes....... everything ;).
Yes those spasms are a common EM symptom - I call them cramps. Do your calves feel tight- sharp pain?
Thinking of you
God bless
mads
I get some in my calves, yes, like the other day when I had to go to the ER; it was awful! The veins were even visible in my shins, which was crazy.. What scared me most was my left foot felt dead: I was pounding the bottom of my foot with my fist and didn't feel it.. I don't think I've ever been so scared.. I could feel like a tightening even in my thighs; is this typical?
I woke this morning to pins, needles and pain as somehow during the night my feet became covered.. I WILL beat this thing; it's NOT having me! Started my meds and am ready to conquer!
mads: Yes I felt the tightening up in my thighs, and you could see the veins spasming up into my shins.
Somehow, the covers got on my feet during the night so I awoke to TONS of pins, needles, and pain.. Taking my meds, sitting under the ceiling fan with the windows open, trying to stay comfy.. I WILL kick this things butt! It's NOT going to get the best of me!
Hang in there, folks!
S.
mads said:
Oh SAB, Thats wonderful news...... wonderful!
Im crossing my fingers, my toes....... everything ;).
Yes those spasms are a common EM symptom - I call them cramps. Do your calves feel tight- sharp pain?
Thinking of you
God bless
mads
God bless you and thank you for sharing. What I am going to research is if lamotrigine(better known in the states as lamictal) affects the sodium channels in the same way as Mexilitine. Lamotrigine does not need close cardiac monitoring and is an anticonvulsant (as you mentioned) whereas Mexilitine can cause cardiac irritability (I have cardiac rate issues, so we are holding off on this for now).
Praying for healing. What do you do to maintain sanity?
I think I threw sanity out the window a while ago.. ;)
Sorry, I had to toss that in there.. ^^
Jenny Jones said:
God bless you and thank you for sharing. What I am going to research is if lamotrigine(better known in the states as lamictal) affects the sodium channels in the same way as Mexilitine. Lamotrigine does not need close cardiac monitoring and is an anticonvulsant (as you mentioned) whereas Mexilitine can cause cardiac irritability (I have cardiac rate issues, so we are holding off on this for now).
Praying for healing. What do you do to maintain sanity?
Dear ((((((Jenny))))))).
Good to see you back.
Lamotrigine does not have same effect as not a Class IB antiarrhythmic. I took Lamotrigine first and sufferered severe muscle weakness/spasticity/jerking.It really made me ill. Lamotrigine has real nasty side effects .Considered only to act like a sodium channel blocker.
Mexiletine can cause cardiac arrhythmia but thats why you are closely monitored ie: ECG every 6 -8 weeks, BP taken daily and recorded. Mexil is tritated up very slowly to avoid these side effects.All i can offer is my own experience. I have been on Lidocaine and Mexil now for 5 months. It has given me some life back, but we still need to get the dose right. I was totally bedridden, now i can manage for brief periods on sticks , and not be reliant on carer 24/7..In terms of pain - it has taken the edge off. I was suicidal .Systemic EM is intolerable, relentless, everywhere.When I say take the edge off- thats really massive. In the begining ,whilst adjusting - yes- side effects are unpleasant but tolerable- most medications have awful side effects anyway . Its a case of weighing up pros and cons. SCB have definitely helped me.
Channelopathy research is hailing sodium channel blockers(SCB) as the new wonder treatment for refractory pain. The new TEVA drug XEN 402 - hopefully available in around 5 years, works exactly like Mexil - but without the side effects.
NB: Guys- I attached research on lidocaine/mexiletine and TEVA drug earlier on during this post if anyone wishes to download and read..
RE: Maintain sanity.
Personally, I focus on 'giving back'. Supporting and helping others when i have 'better' moments.I found myself a new sense of purpose. Sharing with my inspirational 'living with eyrthromelalgia' family, and chatting with wonderful friends like you. Sanity has been maintained by coping with life 'one day at a time',I also have my faith and spend time in prayer, which brings me incredible comfort and hope. I think the most important thing is that I try to focus on being grateful for what I do have. I have so many blessings in my life, things I never realised, things I took for granted. I do become 'insane' , sometimes ,really, really insane - ask the other moderators ;) But hey , EM'ers are entitled to have 'bad' days whenever they want lol! . Ultimately, I think learning to accept my condition and surrendering ( ie:stopping the hysteria, insanity, anxiety) ,has helped me cope better.As I said - just take it one day at a time.
Wishing all EM'ers a 'comfortable' night.
God bless
mads x
Thank you for your awesome response 
What is SCB?
Will write more soon
I am grateful you have gotten some relief… god bless you!!
I hope you don’t mind me asking (and don’t answer if you don’t wish to), but are you positive for the gene mutation? Does it run in your family? And how long have you been dealing with this?
GOD BLESS YOU!
Wish we were close, so we could meet up and chat.
Jenny
Gosh mads I am so sorry to hear that you suffer so badly from this!! When you say EM is systemic for you what are your systemic symptoms? May I share that I have the burning and itching along with redness in my scalp constantly...my chest, neck, ears inside and outer ears, face are affected by flushing HOT episodes through out the day...and at night my feet, ankles and lower legs join in the HOT MESS and I wake up burning up from head to toe and break out into sweats...I do this off and on all night...my mattress actually feels hot because my body gets that hot...then sometimes I get chilled...crazy??!! Is EM systemic when you have the symptoms of EM in your legs, feet and chest up?? I feel fatigued all the time...Do you? As I read some of the post I feel sad that it doesn't seem like relief is in sight for us sufferers and the treatments seem harsh. What are the side effects to IV Lidocaine and mexiletine? I guess we all have to weigh out what treatment works and whether the side effect we experience is a safe trade off...to reducing the pain. This is tough...but thank goodness there are studies going on to give us hope of a cure!!! Rest easy my friend...YOU and ALL who have EM are in my prayers tonight!! Good night : )