Jim, I have absolutely no idea what the cause of my remission, over December 2009 I noticed that I had not had any flares, tingling, redness or swelling, at first I thought it was the medication (Gabapentin) but decided to cut out the meds to see if it was that or not. I was amazed and overjoyed to realise that the symptoms didn't come back. To this day I have no idea why, I was still doing the same things, eating the same diet etc
Jim Weed Alaska said:
Laura, on your 18 month remission, what was the cause of the remission. I am on the second week of a Predisone trial. I have seen other trials where people were in remission after one year (with no follow up after one year). And one person after two years with no sign of it coming back. BUT in all cases it was someone that had just been diagnosed with EM (had EM less than 7 months). I am two years with EM and am afraid over the hump for this to possible help me. Laura, in those 18 months of Heaven, what special things did you do? Jim
lauraflora1 said:
I was one of the lucky ones who went into remission for 18 months, I was able to come off all medication and had no symptoms at all. BUT like you say it was not a cure and did come back to haunt me. I am still hopeful that as it's happened before that it could happen again.
Kentuckian said:
Just to give clarification regarding my statement about having heard of a few lucky people "cured", I should have used the word "remission". Who is to say their EM will not return? But it may not. And as far as I know they were not part of any research study. One was reportedly in India, read it in a medical article online but can't locate it right now. Another remission was someone I knew, not someone I read about. I think hope is important. I'll never give up hope.
emindependence said:
" I have never heard or read ANY researched project where anyone was cured."
@emindependence....I am wondering how you can make the statement I am not doubting claims of remission then follow it with the rest or the comment. You clearly were doubting our claims after reading that I went into remission for 18 months and Jim Weed knew of somebody who did too. I feel angry that somebody would think it's ok to call me a liar in a group that is meant to be here for support..!! I was going to say I'd post you my medical notes but thats just dropping down to a level that I am far better than.
EM is rare - something we all know
EM has had very little research done on it - again common knowledge
EM is treated on trial and error basis because Drs know so little - something we've all probably witnessed
So if medical professionals know very little BUT still don't disbelieve the patients then I certainly don't think its fair or right for another patient who's been through this to judge other people who are trying to be supportive.
There is lots of reasons why you might not have read about people going into remission and frankly I don't care but please don't make me or others feel like you are doubting the discussion posts .
emindependence said:
Let me be clear. I am not doubting claims of remission . I am just making a very educated and researched statement. I spent 3 years researching, being a member of TEA and following 3 EM support groups and only one person, a doctor who has EM, hassle the statement that he went into remission. Last I heard he is no longer in remission. If the person you know that went into remission was formally diagnosed with EM I beg you to have them get in touch with Dr. Waxman at Yale Medical Center. He is working very hard on research for EM and this type of news may allow him to apply for additional funding to further his research. I will never give up hope for anything that will help us get back even just a small part of quality of life. I would give anything to just have one day to do the things I no longer can. My intention was not to upset you and I am so sorry if I did. Please have your friend contact Dr. Waxman.
Jim Weed Alaska said:
Laura, on your 18 month remission, what was the cause of the remission. I am on the second week of a Predisone trial. I have seen other trials where people were in remission after one year (with no follow up after one year). And one person after two years with no sign of it coming back. BUT in all cases it was someone that had just been diagnosed with EM (had EM less than 7 months). I am two years with EM and am afraid over the hump for this to possible help me. Laura, in those 18 months of Heaven, what special things did you do? Jim
lauraflora1 said:
I was one of the lucky ones who went into remission for 18 months, I was able to come off all medication and had no symptoms at all. BUT like you say it was not a cure and did come back to haunt me. I am still hopeful that as it's happened before that it could happen again.
Kentuckian said:
Just to give clarification regarding my statement about having heard of a few lucky people "cured", I should have used the word "remission". Who is to say their EM will not return? But it may not. And as far as I know they were not part of any research study. One was reportedly in India, read it in a medical article online but can't locate it right now. Another remission was someone I knew, not someone I read about. I think hope is important. I'll never give up hope.
emindependence said:
" I have never heard or read ANY researched project where anyone was cured."
I was in no way judging you or anyone else that has gone into remission. Just the opposite. I am in awe of your ability to be relieved of EM for any amount of time. As there is so little known of this disease I was excited to hear that some have gone into remission and thought this information would be welcome news to one of the top researchers of EM. People that suffer from EM know more about this disease than most doctors. That is why when I read your post I suggested that you share this with Dr. Waxman. The more information we can share with researchers the better chance there will be for them to find better ways to treat us medically and to get more research money. I would never call anyone a liar or doubt their experiences with EM. I am leaving the group as I have offended you when that was never my intention.
lauraflora1 said:
@emindependence…I am wondering how you can make the statement I am not doubting claims of remission then follow it with the rest or the comment. You clearly were doubting our claims after reading that I went into remission for 18 months and Jim Weed knew of somebody who did too. I feel angry that somebody would think it’s ok to call me a liar in a group that is meant to be here for support…!! I was going to say I’d post you my medical notes but thats just dropping down to a level that I am far better than.
EM is rare - something we all know
EM has had very little research done on it - again common knowledge
EM is treated on trial and error basis because Drs know so little - something we’ve all probably witnessed
So if medical professionals know very little BUT still don’t disbelieve the patients then I certainly don’t think its fair or right for another patient who’s been through this to judge other people who are trying to be supportive.
There is lots of reasons why you might not have read about people going into remission and frankly I don’t care but please don’t make me or others feel like you are doubting the discussion posts .
emindependence said:
Let me be clear. I am not doubting claims of remission . I am just making a very educated and researched statement. I spent 3 years researching, being a member of TEA and following 3 EM support groups and only one person, a doctor who has EM, hassle the statement that he went into remission. Last I heard he is no longer in remission. If the person you know that went into remission was formally diagnosed with EM I beg you to have them get in touch with Dr. Waxman at Yale Medical Center. He is working very hard on research for EM and this type of news may allow him to apply for additional funding to further his research. I will never give up hope for anything that will help us get back even just a small part of quality of life. I would give anything to just have one day to do the things I no longer can. My intention was not to upset you and I am so sorry if I did. Please have your friend contact Dr. Waxman.
Jim Weed Alaska said:
Laura, on your 18 month remission, what was the cause of the remission. I am on the second week of a Predisone trial. I have seen other trials where people were in remission after one year (with no follow up after one year). And one person after two years with no sign of it coming back. BUT in all cases it was someone that had just been diagnosed with EM (had EM less than 7 months). I am two years with EM and am afraid over the hump for this to possible help me. Laura, in those 18 months of Heaven, what special things did you do? Jim
lauraflora1 said:
I was one of the lucky ones who went into remission for 18 months, I was able to come off all medication and had no symptoms at all. BUT like you say it was not a cure and did come back to haunt me. I am still hopeful that as it’s happened before that it could happen again.
Kentuckian said:
Just to give clarification regarding my statement about having heard of a few lucky people “cured”, I should have used the word “remission”. Who is to say their EM will not return? But it may not. And as far as I know they were not part of any research study. One was reportedly in India, read it in a medical article online but can’t locate it right now. Another remission was someone I knew, not someone I read about. I think hope is important. I’ll never give up hope.
emindependence said:
“ I have never heard or read ANY researched project where anyone was cured.”
I’m not asking you to leave the group… I guess all I wanted to get across is the fact that what’s written in text can be upsetting even if that’s not the intention… I feel that we should all support each other and if there is something positive we can share with others to give them hope then that’s great. I felt like that had been thrown back at me…
Sharing positive information is not only important to those with EM but should also be shared with those researching the disease. You may have some sort of anti-body that has not been identified before. That is what I was trying to get accross.
I went back to see if I could find the most recent stories or notes regarding remissions. One is the article below. I checked my notes on the other person whose EM went away. Her EM had started around age 10 after having some seizures. Eight years later she had a couple of seizures, went into a coma and when she came out of the coma the EM was gone and had not come back as of yet, several months later. But of course it still could come back. But I'd heard of others who went into remission after coma and it was assumed it was the IV fluids that helped or that the treatment being tried for the EM worked (were intentionally put into coma due to the type of medication being tried). I've heard of one person who gets IV fluids every week or two and it significantly helps her EM though there is no drug added, just needs the hydration.
But there are so many different underlying disorders that seem to be able to cause EM that it's hard for others of us to know what may be helpful for us. I've heard of people trying all these methods mentioned in this post who did NOT improve with these methods. There are no sure things.
It appears that there is a significant difference between what is considered "primary" and "secondary" em. The young lady that inspired me to start this thread and join this group has not had a flare since December, and it seems as though her doctors are investigating it as a possible byproduct of adhd and anxiety issues. From what I gather from most of your stories here, a "remission" of two months is virtually unheard of. Are any of you diagnosed as having "secondary" em ?
I have been keeping up with ya'll and want to know what you would do if you were in my shoes. I was 63 when this first happened to me and my pcp diagnosed me in about 2 months. That first episode lasted about 6 months. I have MS and was already on 3600 mgs of Neurontin per day and he increased it to 4800 per day and if I'm not mistaken that is the max. I went along ok until last summer and it returned but this time in only one foot and leg. That time we just waited it out and it only lasted about 3 months. Now here it is about 7 mos. and it is back with a vengence in both legs. Now my wonderful dr/ has added amytriptyline and after about a month I started seeing a little improvement and then I fell getting back to my wheelchair and injured my right leg and foot and I am now on a powerful antibiotic for the injury. My leg is swollen almost twice its regular size and is very painful. I'm already on large amounts of pain medicine and if not so, I don't think I could stand it. After reading your posts I started taking an aspirin a day. Now, what I wanted to ask ya'll is after hearing my sad story, has anyone got any advice for me other than don't fall down! Any advice is so very welcome and I want ya'll to know I appreciate anything you have to say. You're a great group to be associated with and I look forward to hearing from you. Love, Kat
I share your opinion of the people here- everyone has been so nice! You may think I am being flippant but I really am not: I have read that marijuana can really help with the pain- if you live in a state (or in DC) that has legalized marijuana for medical purposes, I would go for it. It sounds like you deserve a break and, though I haven' t used marijuana in many, many years due to my profession, it may provide someone like you with a nice, relaxing vacation from the pain and angst that goes with it.
MMC, the doctors have yet to find out if I have primary or secondary EM but was told that it's probably secondary because of the age that symptoms started... I'm not sure if that is how the medical profession decide or not because it was my gp (who knew nothing about EM until I presented with symptoms) told me..
Kat, how long ago did you injure yourself falling out of your wheelchair? I think that you definitely should get it looked at if you haven't already, and even if you have seen a doctor if it's gone on for a while maybe you need to go back.
I had an appointmet at the pain management clinic a few days ago and the specialist mentioned a few different medications and combinations that he will try if I get up to the max dose or gabapentin (neurontin) without success. I can't remember all the names but he is going to post me a copy of the plan when he sends one to my gp. If you want Kat I can let you know what meds he is going to try me on as soon as I get the plan through?
I totally agree with you, it is a great group, full of friendly, supportive people, who know exactly what everybody else is going through.
They have MANY stories of remissions of this disease in other countries. I have a stack a foot tall of them, that I have taken in to doctors, and requested the same treatment(s). To be denied here in the US. ALL of the remissions involve a medical coma. Most of which are produced by Ketamine and _______ which is about 5-7 different things. The coma usually has to be solid and deep for about 3-4 days. All medicines I have listed give the weight/height/gender/age of patients. Mayo Clinic denied me, after passing ALL there cardio tests, because they site it is better for me to have "some" quality of life, then "No" life. Because of the risk of not waking up. The reason Ketamine is effective is that it is able to re-set your central nervous system, where the mutated cells are. Your brain is actually seperate at that point, where you wouldn't even know your name if you wern't in the coma. When they infuse the lidocaine systematically your organs recieve the same message, so Your genetically mutated cells become non-aggressive and that is why when you wake up, you are symtom free. Anyway, I sound like a doctor, but It's just years of research. So, far ALL the treatments are similar that I have read, some identical, Countries like Argentina, Germany, etc. do it- Presently I am looking into the Apollo Group of hospitals, (India and Thialand) where the average procedure is 3-5 thousand dollars, for a 20 day stay in their country, with a guest. I have not found a doctor to do it yet.
Kentuckian said:
I went back to see if I could find the most recent stories or notes regarding remissions. One is the article below. I checked my notes on the other person whose EM went away. Her EM had started around age 10 after having some seizures. Eight years later she had a couple of seizures, went into a coma and when she came out of the coma the EM was gone and had not come back as of yet, several months later. But of course it still could come back. But I'd heard of others who went into remission after coma and it was assumed it was the IV fluids that helped or that the treatment being tried for the EM worked (were intentionally put into coma due to the type of medication being tried). I've heard of one person who gets IV fluids every week or two and it significantly helps her EM though there is no drug added, just needs the hydration.
But there are so many different underlying disorders that seem to be able to cause EM that it's hard for others of us to know what may be helpful for us. I've heard of people trying all these methods mentioned in this post who did NOT improve with these methods. There are no sure things.
It appears that there is a significant difference between what is considered "primary" and "secondary" em. The young lady that inspired me to start this thread and join this group has not had a flare since December, and it seems as though her doctors are investigating it as a possible byproduct of adhd and anxiety issues. From what I gather from most of your stories here, a "remission" of two months is virtually unheard of. Are any of you diagnosed as having "secondary" em ?
I have primary EM. Let me start by saying that, and when it first started with me, I thought I was just working too much, I would go a few weeks or months with no indication of EM. I don't call that a remission for myself, it was coming on like that. If the gal you are trying to help has ADHD or is emotionally sensitive, that is her cryptonite. Any emotional fluctuation (and we as women have all our fabulous emotions-lol) is not helpful to us. The methampetamine based adhd drugs do the same that methampetamine does to the central nervous system. Straterra, and a couple others are adhd drugs that are non-methampetamine based. She should be so thrilled, you are a life coach for her too..... If she has no one else, on a "bad day" of this, you will be priceless. I'm so happy for her.
The other day I read the remission article using the CLS that you are talking about. When I went to the doctor, asked him to do the blood test for the mutated gene. He would not send it to Germany to have it tested. Not sure why he would not do that? It has to be sent somewhere, why not Germany? I have read about that CLS and I could consider it but would want to finish this prednisone test first, then there is an infusion (is that with Ketamine?) possibility. Yes I am like you. I am willing to try anything to get a better quality of life. I never liked that term "quality of life" until I got this dreaded disease. Jim
Heidi said:
They have MANY stories of remissions of this disease in other countries. I have a stack a foot tall of them, that I have taken in to doctors, and requested the same treatment(s). To be denied here in the US. ALL of the remissions involve a medical coma. Most of which are produced by Ketamine and _______ which is about 5-7 different things. The coma usually has to be solid and deep for about 3-4 days. All medicines I have listed give the weight/height/gender/age of patients. Mayo Clinic denied me, after passing ALL there cardio tests, because they site it is better for me to have "some" quality of life, then "No" life. Because of the risk of not waking up. The reason Ketamine is effective is that it is able to re-set your central nervous system, where the mutated cells are. Your brain is actually seperate at that point, where you wouldn't even know your name if you wern't in the coma. When they infuse the lidocaine systematically your organs recieve the same message, so Your genetically mutated cells become non-aggressive and that is why when you wake up, you are symtom free. Anyway, I sound like a doctor, but It's just years of research. So, far ALL the treatments are similar that I have read, some identical, Countries like Argentina, Germany, etc. do it- Presently I am looking into the Apollo Group of hospitals, (India and Thialand) where the average procedure is 3-5 thousand dollars, for a 20 day stay in their country, with a guest. I have not found a doctor to do it yet.
Kentuckian said:
I went back to see if I could find the most recent stories or notes regarding remissions. One is the article below. I checked my notes on the other person whose EM went away. Her EM had started around age 10 after having some seizures. Eight years later she had a couple of seizures, went into a coma and when she came out of the coma the EM was gone and had not come back as of yet, several months later. But of course it still could come back. But I'd heard of others who went into remission after coma and it was assumed it was the IV fluids that helped or that the treatment being tried for the EM worked (were intentionally put into coma due to the type of medication being tried). I've heard of one person who gets IV fluids every week or two and it significantly helps her EM though there is no drug added, just needs the hydration.
But there are so many different underlying disorders that seem to be able to cause EM that it's hard for others of us to know what may be helpful for us. I've heard of people trying all these methods mentioned in this post who did NOT improve with these methods. There are no sure things.
MMC, a remission of two months at the start of primary EM would not be unheard of. I can't comment on the pharmacology of the the ADHD drugs, but the anxiety issue thing is a load of rubbish. While emotions like anxiety can trigger a flare, they can't cause EM. It's the usual rubbish, that it's down to emotions, that there are psychological issues etc etc ad nauseam. Most women, especially teenage girls, who have EM get the emotional/mental health problems label.
On the aspirin, have been told that a couple baby aspirin per day is better than a whole aspirin. Mayo clinic told me that. I don't know anything about MS?????? But.....have heard that people that live close to the equator do not have (or don't have as many cases of) MS or EM??? I am not sure of that and can't find any info. I would sure go to a Herbal Doctor and talk to them about diet.
KatBaskin said:
I have been keeping up with ya'll and want to know what you would do if you were in my shoes. I was 63 when this first happened to me and my pcp diagnosed me in about 2 months. That first episode lasted about 6 months. I have MS and was already on 3600 mgs of Neurontin per day and he increased it to 4800 per day and if I'm not mistaken that is the max. I went along ok until last summer and it returned but this time in only one foot and leg. That time we just waited it out and it only lasted about 3 months. Now here it is about 7 mos. and it is back with a vengence in both legs. Now my wonderful dr/ has added amytriptyline and after about a month I started seeing a little improvement and then I fell getting back to my wheelchair and injured my right leg and foot and I am now on a powerful antibiotic for the injury. My leg is swollen almost twice its regular size and is very painful. I'm already on large amounts of pain medicine and if not so, I don't think I could stand it. After reading your posts I started taking an aspirin a day. Now, what I wanted to ask ya'll is after hearing my sad story, has anyone got any advice for me other than don't fall down! Any advice is so very welcome and I want ya'll to know I appreciate anything you have to say. You're a great group to be associated with and I look forward to hearing from you. Love, Kat
There is an idea that MS is caused by a lack of vitamin D, in addition to genetic factors etc. There is a centre for MS research here in Scotland, partly funded by JK Rowling (the author of the Harry Potter books), because there is such a high incidence of MS in Scotland. The theory would explain why there is less MS in the countries close to the equator, as vitamin D is created when the sun shines on the skin.
Kat, I'm really sorry to hear about your fall, especially when things were starting to look better. The one foot and leg is found is many cases of EM, or that flares are especially common or severe in one foot and leg.
If I get an infection in my leg, usually cellulitis or lymphangitis, my pain goes off the scale. The only thing that ever worked for it was high doses of pethidine, given by injection. I was using 100mg of it when I was a seven year old! For reference, at the time, the recommended dose of it for a woman in labour was 50-100 mg, and I was a small seven-year old! As it isn't a commonly used drug now, please remind your doctor that 100mg of pethidine only equals 10mg of morphine, as they tend to get pretty worried by the apparently high amount required, and refuse or give a dose that is way too small to help.
A second suggestion is IV lidocaine. I've been trying infusions of lidocaine, different to the one Heidi was talking about. I've just had my second one, but the one I had two weeks ago did help to make the flares come on later for a few days, which is pretty good going for the first one
I really hope that you are feeling better soon and out of pain.
love and healthy wishes
Lorna x
KatBaskin said:
I have been keeping up with ya'll and want to know what you would do if you were in my shoes. I was 63 when this first happened to me and my pcp diagnosed me in about 2 months. That first episode lasted about 6 months. I have MS and was already on 3600 mgs of Neurontin per day and he increased it to 4800 per day and if I'm not mistaken that is the max. I went along ok until last summer and it returned but this time in only one foot and leg. That time we just waited it out and it only lasted about 3 months. Now here it is about 7 mos. and it is back with a vengence in both legs. Now my wonderful dr/ has added amytriptyline and after about a month I started seeing a little improvement and then I fell getting back to my wheelchair and injured my right leg and foot and I am now on a powerful antibiotic for the injury. My leg is swollen almost twice its regular size and is very painful. I'm already on large amounts of pain medicine and if not so, I don't think I could stand it. After reading your posts I started taking an aspirin a day. Now, what I wanted to ask ya'll is after hearing my sad story, has anyone got any advice for me other than don't fall down! Any advice is so very welcome and I want ya'll to know I appreciate anything you have to say. You're a great group to be associated with and I look forward to hearing from you. Love, Kat
All: I am reading through some of these responses and I am truly awestruck by your compassion and care for each other and for my kid who has this crappy disease. However, to be honest, I am not deserving of the accolades that some of you have given me: the girl I am trying to help has helped me achieve a personal goal of mine, and, therefore, there isn't much I wouldn't do for her. That said, I don't want anyone to think I am some sort of altruistic do gooder helping some poor afflicted child: she has a wonderful family, a phenomenal boyfriend, and a huge network of friends around her who also support her, Furthermore, my teacher colleagues have been nothing short of amazing in understanding what is going on with her and allowing her to work at her own pace to catch up with what she has missed. We have a great community here, and I am a part of that and nothing more.
Every morning, I wake up secure in the notion that my wife, my children and I will not suffer excruciating pain at any point in the day. Our hands will not swell , nor will our feet, and we will enjoy a relatively peaceful existence. Most of you, however, are not secure in that knowledge. I imagine many of you watch the clock with a feeling of trepidation, hoping against hope that your body, if only for a day, will not turn against you. In spite of that, you go out of your way to help some dude (me) who is groping around more or less blindly to spare himself the emotional pain of watching one of his stars succumb to the disease you deal with every day. I appreciate the kind words that you have said about me, but , more than that, I appreciate the compassion and humanity that all of you have exhibited in helping me to understand how to help a child, when many of you may not have received that same consideration yourselves. Groups like this really restore your faith in humanity !