Oh Patti, I am sooooo ashamed. I just somehow missed your reply entirely. Usually they come into my regular mail box. It didn’t and now it’s six months later. You asked about the 23&me DNA data. It’s all there. However if you’re goin to look for SCN9A, SCN10 or SCN11, you can go to the raw data section and plug in any gene you’re looking for. Sounds hard, but it’s pretty easy. So much time has passed that you’ve probably figured it all out on your own. Patricia aka Satochan
Hi I got messed up! I was saying it’s interesting what you found out about your migraines. Well, I hope you’re continuing to get some relief. Sometimes I wonder how much longer I can go on with EM. I wish it would just go away. Or I wish I could find something that would even give 50% relief! I’ve tried so many things & nothing has helped. But it’s been nice talking with you. I’ll let you know when I do the 23andme. It probably won’t be until November…which reminds me of winter when my feet get even worse. I’m sorry I’m not very encouraging right now…I’m sure I’ll have a better day tomorrow. Hope you do as well. 
Hello! I’m fairly new to the site, but I have been reading this thread in my research for my daughter who is 20 and is suffering horribly with EM.
BNashville - my daughter also had an ANA titer of 1:80. It started at 1:40, then was tested again about a month later and it had jumped to 1:80. Like you, all her other subset tests were negative. This being said, her grandmother (my mom) has mixed connective tissue disease with an overlap of Lupus. My daughter suffers also with bone and joint pain. She is losing her hair rapidly. Lost about a third of it. Fortunately, she had a lot to start with, so it’s not horribly noticeable to others. I think she has Lupus, but I can’t hardly get in to see a rheumatologist and the ones that we did get in to see just dismiss the ANA 1:80 and basically treat us like we should not be there and are wasting their time. One would think they would take family history into account. I know Dr. Graham Hughes (foremost expert on Lupus) would, but he’s in London and not exactly accessible.
My daughter also has her most intense flares at night, but lately it is 24/7. She is housebound and needs help showering and doing the basic things in life. The pain is so severe that sometimes she passes out from it. It makes her heart rate and bp go up when it is this bad, and lately that’s been all the time. She does take Propanolol for the heart rate as she has POTS, too.
Satochan - Are you still receiving the IV lidocaine infusions? If so, are they working. For how long? My daughter’s PCP is humming and hawing about what to do with her as we speak. He was very hard to reach, but finally sent an e-mail when phone calls were not returned, and then sent a text, which was finally answered and said he needed to think about it. I told him not to think too long, she gets worse every day. My daughter even asked for him to put her in the hospital so he could see what was going on. We need something done, and quick! She’s on a boatload of medications and none of them are working worth a darn. She would be unconscious, though, without them.
If you all have any suggestions, I am all ears!
p.s. I did forget to mention that in my daughter’s lupus testing, she actually did have another test come back abnormal. That was the Complement 4 level. It was quite low. It had been tested about 4 years ago and was lower this time than it was back then. Also, boy I had a brainfade when I forgot all this, her PCP put her on a trial of Plaquenil (200mg) and Prednisone (7.5mg). She had her ANA retested and it now has come back negative and her Complement 4 level has raised several points. That, to me, would mean that it is working. Also, the prednisone is helping the eye pain and pressure that she was feeling, just not the EM. Food for thought…
So sorry to hear your daughter is suffering, FireGirl. My ANA was negative the first time, positive second, and then negative again…While my rheumatologist says there’s no evidence I have lupus, he is still considering putting me on Plaquenil at my next visit in February. I wish there was something I could share that would help you, but I’m in medical limbo at the moment. I’ve been referred to a neurologist for SFN (due to abnormal QSART test), now, so I feel like I just keep adding doctors, with no one being able to help.
My advice would be to keep fighting to find help for your daughter. I know it isn’t easy, but it is my hope that one day one of these doctors will help me. Additionally, know you’re not alone 
My daughter’s PCP actually called this afternoon. Evidently he has spent the weekend research EM. From what he rattled off to me, he did well in his search. We are starting with tracking her temp levels of her skin, just so we have some numbers. He had some questions for me to ask her ped neuro, looking for lesions on the hypothalamus and a connection between EM and past spinal surgery. My daughter was born with a tethered spinal cord and had it released when she was 3-1/2. Had a lot of info on EM and how the sympathetic nervous system works, too. So, at least he’s finally listening. Guess persistence pays off. Well, hasn’t really paid of yet, he hasn’t helped her. Just have his attention.
Best wishes to you!!
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I’m one with lots of experience with autoimmune. There is a criteria to meet if your labs are normal. Abd 1:80 is considered positive and not low positive. A low positive is 1:40 and even if you have low positive the symptoms do matter to get a diagnosis. Rheumatologist all have a different opinion. You need to get in with one that treats the symptoms not one that is stuck on labs. There is a percentage of people that have lupus with negative labs. We have em and there isn’t a lab to say we are positive for em just if you have the genetic test which to me doesn’t help much if your negative to that test. So in light of that it is always very possible that one has a disease that tests negative as we all are wired differently. If you Google lupus criteria see if you think you meet the criteria. Joint pain, hair loss is part of lupus. The problem is that no two lupus cases are the same. The c3, c4 compliments help indicate act of very lupus but that lab also could be positive for Mal nutrition. It’s important to keep a daily log and take pics of your symptoms if visible. Red, swelling, hair at the bottom of tub, etc etc. Check fever daily. Call around for rheumatologist and ask if they specialize in lupus, how many patients do they have, do they treat symptoms? That’s important. Keep pushing for an answer. No one is going to think about us when we go home. Mostly it’s a job to them and they have too many patients. They go home at night and don’t think about you again. So research and keep at it. I hope that you all find your answers soon. Wishing you a pain free day!
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That is a brilliant answer. Thanks for going into detail. I know from experience that having a negative result doesn’t mean you don’t have something. A few years ago I had a MIBG scan to find out if I had another rare disease pheochromocytoma which is a tumour on your adrenal gland. The scan showed no take up of radioactive iodine which means it’s negative. However I had read up on it and found that if the tumour isn’t over producing noradrenaline at the time of the scan it will be negative. It took 2 years for them to accept they could be wrong and removed my adrenal gland. The tumour was sent for histology and came back that it was a Pheochromocytoma. So just goes to show results aren’t always as they seem.
Dear Patti, I hope you read the info on CBD Oil. Don’t ever give up. My heart breaks for all of us. My dog is sleeping cuddled next to me. She feels like a log out of a fire place. I’ll have to put a pillow between us.
Patricia (aka Satochan)