Just found out I was approved to participate in the study. So excited! Gotta fill out forms & fax them back then will receive saliva text kit in the mail. Will let everyone know how it goes!!
Good for you Hotmama.
I am so happy to see so many others taking part. Yes. Please let us know how it goes!
Take care,
Alina
I received my results form Mar 20, 2014 from Xenon. I am negative to the SCN9A variant. Pat in NH
Shih tzu Mom said:
I was selected yesterday. I filled out the questionnaire 2 weeks ago. I wonder if any of the people who have been selected to participate already know if they have primary EM? If so, how was it determined that you do have primary? Just curious is all. I am looking forward to whatever answer can be discovered by this study. My best wishes to all the other members in this group as we head into the warmer months here in the states. I am not looking forward to them that's for sure. Hang in there people, with any luck at all, perhaps this will be one of our last summers of misery.
Great news prich. Now you know u r secondary EM. It might be you already have a second disorder/s or it may manifest with time. Good idea to be screened yearly- full bloods, ECG, vascular ultrasound, immune disorders.
Could be they could treat underlining disorder . If not EM treatment itself is the same anyway - SCB, CCB, Serotonin, Antihistamines etc.......
God bless
mads x
That is very important to know because as Mads said you need to be vigilant about regular testing for a secondary disorder even if other testing has come back normal so far. With any luck you will be able to figure out the cause and treat that and hopefully that will get rid of the EM too!
Take care,
Alina
Thanks for re posting this Mads! It is very encouraging to know that there ARE people interested in researching this awful disease!
Jordy
Alina Delp said:
That is very important to know because as Mads said you need to be vigilant about regular testing for a secondary disorder even if other testing has come back normal so far. With any luck you will be able to figure out the cause and treat that and hopefully that will get rid of the EM too!
Take care,
Alina
Is that really how this works? I am referring to the Primary or Secondary disorder concept. Are you saying that those of us with secondary can attribute our EM to another condition? Do doctors know what the other conditions are or at least how to uncover/diagnose them? Then if and when they are treated or at least managed, they, in turn, manage the EM? The flip side of this, Primary EM, which is what we are going to be told in this study, reveals the symptoms of EM are isolated to EM itself? Forgive my ignorance, I have not had anyone explain this to me before. I was under the impression the Primary vs Secondary was related to whether or not the gene was inherited from family members and that would help Drs. determine a more appropriate method for treating/managing. Boy, I have a lot to learn and would appreciate someone with first hand knowledge breaking this down for me in simple terms. Thanks guys.
Oh my God !!! I’ve just been selected !! I can’t believe it! I’m still shaking…feel like I’ve won the lottery!!! Thank you sooooo much for posting this. I’ll keep you all posted on the results. God Bless
Thanks Jordy. One or two small little projects are taking place in Netherlands. Canada and USA are undertaking research into refractory pain and genetic EM. There will be a new drug available hopefully in 5 years. I have posted the details. Its currently orphan status.
Apart from that I am trying to undertake research here in UK
Dominique - fantastic news! Please keep us posted.
God bless
mads
Hi Shih tzu Mom,
Have you applied for XENON testing? If not - its a good idea. At least you will know whether you have the genetic link SCN 9A related inherited EM.. Alina is right. If you have primary , then its genetic cause. If you have secondary then its usually because of another underlying disorder such as Rheumatism, Lupus, CRPS etc.... anything really. Saying that many secondary sufferers are idiopathic = of unknown cause. That means there is no underlying disorder. Some secondary EM'ers develop their secondary disorder years down the line. So hope that simplifies things for you ;)
You can treat the secondary disorder in the hope that it rids you of the EM, or at least minimises symptoms. But remember not all disorders can be treated or cured.Testing is imperative if you have secondary. It will preallay the secondary disorder and catch it developing ie: thrombotic disorders etc...Again, saying that not all delayed secondaries are curable and all disorders are only treatable to certain degrees.
Really depends what your secondary is.
So- treating a secondary does not mean you will get rid of your EM.
Primary means in the future gene therapy will be the answer
Ultimately, currently all EM is treated the same way.
Some arguments that certain meds work better for different EM types ie: Aspirin works better for primary EM, but there is no clear consensus.
Other factors that influence EM is whether it is late/early onset, gradual or acute onset. All these factors considered to influence the severity and progression of EM.
Hope you are 'comfortable' tonight
God bless
mads
Shih tzu Mom said:
Alina Delp said:That is very important to know because as Mads said you need to be vigilant about regular testing for a secondary disorder even if other testing has come back normal so far. With any luck you will be able to figure out the cause and treat that and hopefully that will get rid of the EM too!
Take care,
Alina
Is that really how this works? I am referring to the Primary or Secondary disorder concept. Are you saying that those of us with secondary can attribute our EM to another condition? Do doctors know what the other conditions are or at least how to uncover/diagnose them? Then if and when they are treated or at least managed, they, in turn, manage the EM? The flip side of this, Primary EM, which is what we are going to be told in this study, reveals the symptoms of EM are isolated to EM itself? Forgive my ignorance, I have not had anyone explain this to me before. I was under the impression the Primary vs Secondary was related to whether or not the gene was inherited from family members and that would help Drs. determine a more appropriate method for treating/managing. Boy, I have a lot to learn and would appreciate someone with first hand knowledge breaking this down for me in simple terms. Thanks guys.
mads and Alina,
Thanks for the response. I have done a few different tests and all have been negative. The dermatologist that DX'd me had me try aspirin and propranolol. Neither helped, although I still take propranolol for my BP. It works better than the BP meds I was taking, so that is a good thing. I also take gabapentin, which helps me sleep, but doesn't do anything for the burning. Also I sometime take Tylenol with codeine when the pain is too great. I don't like taking it because it make groggy the next day.
Mads, I don't know what the letters SCB and CCB stand for. I have tried anti histamines and they didn't help EM and made feel awful. I'm not sure how Serotonin effects me and I don't know if there is a test for it.
In June I have an appointment with a dermatologists at Mass. General Hospital/Boston. I hope I will get some help from that doctor.
Pat in NH
Dear Pat,
i apologise for abbreviations. SCB= sodium channel blocker ie: lidocaine
CCB= calcuim channel blocker ie: iloprost
Opiates such as codeine do not help EM unfortunately
Test for serotonin = 5HTP test . If you look at the post new information for members you will see a file for medication sense- its on there. 5 HtP is tryptophan- it naturally boosts serotonin. Buy in natural remedy shop. Test yourself by taking 2 tablets in 24 hrs for 2 days. If you flare more - its not the route for you.
Antihistamine therapy can be very effective, but high doses needed. What are you taking?
What else do you take in terms of medications and what mg. Are you managing to minimise triggers - heat, stress, fatigue, weight bearing, exertion , and cope with flares?. Maybe we can help you better manage symptoms.How long are you trying meds for Pat? You need to really give them a good go. You often get an increased sensitivty to a lot of meds in EM for 1-3 weeks- pain can get worse.
Are you taking magnesium at all or any other supplements such as omega 3, B vitamins... etc..
Have you applied for the XENON research?.. Details are on this forum.
Oh- what a lot of questions ive asked you. ... im sorry. We just all want to support and offer you help ;)
Plus , im typing with one finger so please excuse lack of flow to my reply.
Thanks for befriending me
God bless
mads
Opiates such as codeine do not help EM unfortunately.
They do for me! I was taking 5mg Percocet twice a day, one in the morning and one before bed. I did this for 9 months last year and would be still doing it had my Dr. not do a complete freak out and stop my care cold turkey. I was not abusing or escalating the amount since it was providing me the ability to sleep for 6 hours or more without waking up in excruciating pain from the sheet touching my feet. During the day I also was able to find enough relief to handle a number of obligations. Perhaps you did not find relief with opiates, but there are others who share my experience as well. Try not to discourage someone from a method of relief that just may be helpful. That would be most unfortunate, in my opinion. There is widespread abuse in growing numbers that has placed Drs and pharmacists on the front line of this chapter of the War on Drugs. Somehow there has to be a happy medium so that those of us who benefit from this class of narcotics can receive them without being grouped in with the drug seeking manipulators of the system.
Hello everyone
Just a quick and important update on testing. I applied for and was accepted for the EM genetic Xenon testing. I later received the kit to collect spit to analyze DNA just wanted to warn you all who have been selected and have received or will receive kit. As instructed by the Xenon company I stopped by the Post office to mail the collected sample even if the envelop included shipping and handling return. I was told at the Post office that the postage stamp was insufficient and had to pay an extra $11 dollars to be precise. Not a problem but just wanted you all to be forewarned, if you don’t first check with post office your sample may never reach destination!!
Of course, we’re taliking Canada Post here!!!
good luck to all
Kit arrived for my Daughter, saliva sample tagged and bagged on its way from Australia to Canada via Fed Ex tomorrow. I really hope the research produces a major breakthrough for all.
Davipot said:
Kit arrived for my Daughter, saliva sample tagged and bagged on its way from Australia to Canada via Fed Ex tomorrow. I really hope the research produces a major breakthrough for all.
Sent mine Friday..Keeping our fingers crossed..Good luck!
As I'm always the skeptic, I'm wondering a few things regarding this study:
For those who applied, has anyone been rejected? & has anyone been told that they tested positive?
The skeptic in me is wondering if perhaps everyone is being accepted, and everyone being told they are negative, and perhaps the sample is being used for some other purpose. I consider my symptoms to still be mild by comparison to many people on here, so I'm a little surprised to have been accepted. I've also not yet been able to come across anyone saying they were denied or that they tested positive, which makes me even more curious.
Hi Violet,
If you wish to apply but have questions I can give you the coordinators email address/phone number. If it helps, rest assured that numerous folk have been rejected and some have tested positive. The LWE EM community is small. Many members do not post regularly so feedback is probably rather skewed. FB members also report proving positive and rejection. I , too, am a skeptic... a big one but I believe in this landmark study. Were you aware that Xenon are also looking for genetic variants. What do you think our DNA might be used for ? You can withdraw from study at any time and your data, sample will be destroyed. Saliva is an excellent source of DNA for genetics testing not much else. My DNA was contaminated ... go figure....skeptic overload lol! I have no worries Violet and will be sending another sample this week.
Big hug
God bless
mads
I'm feeling a bit more confident now, having read the replies here and on some other groups. I'm not honestly sure what else I'd suspect they might use the dna for, but I wouldn't put it past pharmaceutical companies, or governments for that matter, to collect dna samples under a false pretense. Again, I tend to be a suspicious personality type. :)
Can I inquire of those who already got results that they were negative for the gene variant - were you notified by email or did you have to go through your doctor to get that result? I only ask because I noticed it stated in the introduction letter that they wont release information except to your specified doctor. I'm just wondering if I'll have to actually go down to see my doctor to find out if I have the gene variant. ?
Hi violet976 , My daughter was accepted and we dispatched DNA samples. I don't think its a case of testing positive the research will take a look at sufferers DNA and medical history to try and find a common link. When they find the common link they can target the drug research.
There is probably more than one gene or variation mutation that can have an impact on EM. The drug companies appear to be very keen on EM research as it provides the key to non opiate based pain killers and this is the ultimate cash cow for them.
This is probably a good thing for all EM sufferers and hopefully they come up with something in the very near future.