Maiysa

CharmedLinz, I also have autonomic neuropathy and so I'm wondering if that is why I sweat with mine, since I noticed Linda doesn't. ON my Qsart test I had zero sweat, so when I sweat it doesn't feel normal to me. And then I am cold and shaky after. These can last all day long over and over for a few months at a time. I started premature menopause at 32 and had hot flashes for 10 years. I would get so warm, like a rush all the way up to my ears. But it was a very short moment but side effects lasted maybe a minute or so. And they didn't make me feel anything too uncomfortable compared to the flushing I have now. The flushing I have now makes me feel extremely dizzy, almost like my system is overstimulated and just makes me feel illl. Sometimes i get a fever of 101 with my flushing also. I went to ER once when I didn't know I had mast cel and couldn't stop flushing and they said I had a fever of 101 and my tryptase was a still elevated a few days later even though it had calmed down. I didn't realize I was having fevers. And now I take my temp when this is happening and I have the fevers with them, but haven't found many that get the fevers. Anyhow, hope that helps. Feel well. Maiysa

Haha Issie. Again, Blog break for me. I wish I could say those things on the letter. So funny, I just had someone say to me the other day when they asked me if I wanted to meet up with them and they asked what in the world is going on and why I have a possible sprained occiput. So I text her the new diagnosis, and she said, I think it's best we not talk about those things. I don't like those words. haha. This is how it's going for me. So I kind of give up and have learned a lot of people just don't want to hear about it. Oh well. So thanks for listening. I have found its RARE. Maiysa

Dana, What? I would never talk to someone this way. But I thought it was just a nice fantasy to really be able to say what I was feeling. When I read it it made me think that someone was understanding how I was feeling. It made me feel not alone. I would never talk to someone like that. That's funny. I said read when you have the time, not send to it to your family and friends. It was simply meant for Peace to know that many feel the same way. I thought it was funny when the writer said, I don't want to know how Aunt Mary cured joint problems with vinegar. That made me laugh because I have so many people wanting to help me and they come up with some wild theories. I would never ever be mean to someone who thinks they are helping me. It wasn't meant as advice just something to relate too. Wow, I am not coming across in black and white very well. Maiysa

I loved Dana's and Issie's points. Very good. I found this letter on the Joint Hypermobility Syndrome web page in the UK and when I read it I thought it was perfect for what I was going through. But it also applies to dysautonomia or any disease for that matter. Read when you have time: Friends and family How many have found it difficult - almost impossible to share with our partners and families our feelings about living with HMS/HEDS. A member wrote this letter to explain her feelings and has allowed us to reproduce it for others to use: Dear Loved One, I am sending this letter to help you understand my feelings as I deal with HMS/HEDS and the changes it brings to my life. I am scared. I don't know what the future holds for me. Will I end up disabled, in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears. I am angry. HMS/HEDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is the disease I am angry with, not you. Please don't assume you know what is best for me. HMS/HEDS has affected my joints, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch. Don't tell me how Auntie Mary cured her joint problems by drinking vinegar or any other supposed remedy. I have done much research and I keep up on current treatment options. I speak with my doctor regularly, if there is a possible treatment out there, I will know about it. Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind. I want you to know that the pain from HMS/HEDS moves around. Just because I climbed the stairs yesterday doesn't mean I can do it today. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow. Finally, please remember that I am the same person I was before I was diagnosed with this; HMS/HEDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

Ah, no Naomi, I'm actually doing a bit better. I was in bad shape from 2006 to 2010 and was completely disabled. And the POTS was really at it's worst, but I'm lucky since the POTS has basically gone away, but am left with autonomic neuropathy and orthostatic intolerance. Compared to how I was, this is better, but still not functioning even close to normal. But I know I'm probably better than most here and I'm grateful. But so disgusted with the SS administration. I made a decent amount of money and loved my job so much. So it's sad. I called my lawyer and he is going to appeal. YAY!!! YAY!!!! I thought for sure he was done since this has gone on so long. That was good news. I might write to my congress person also. I heard that can help. And to calm your fears, I've heard Nevada is the worst place to try to get disability. IT's different in every state and our state is really struggling right now. That might be why. Anoj, that is so true. They keep asking me if I'm depressed and I say no. I went SS office and this woman and her mom overheard me ask a disability question. They sat next to me and had the audacity to say, you don't look sick. Why you here? Oh MY GOSH!! I laughed and told her my list. She said, wow, you are way sicker than I am. And both her and her mother were obviously tweaking on meth. She said she was approved her first time when she lived in Mississippi and was able to just move it to our state. It's shocking that this person who is obviously high is allowed to pick up a state check and her mother too. Also, I know someone who got into a drinking and driving accident, they got a DUI and a bum leg, and I'm sure it's painful, but they were approved the first time due to the leg. I feel I'm an innocent victim of genetics and still no approval. Unbelievable. My letter also said with my education I have lots of options. It doesn't matter how much education I have, I'm sick!!! Crazy life. Oh well. I shall triumph....eventually.

I'm with Issie Claire, I flush a lot and it doesn't usually show up on my skin. I called Mayo and asked them if it was hot flashes, because I used to have hot flashes but they didn't feel like this. My doctor told me if it's lasting more than a few minutes it's not a hot flash. I would actually flush over and over non stop for days. But it seems to have gotten better with taking a lot of the histamines foods out of my diet. But I was eating at the least 2 cups of spinach because I was juicing it, so probably making it easier to stimulate the mast cells. Anyhow found out that spinach is one of the worst foods. So finding out your triggers is also helpful. Maiysa

I will have to get that book by Dr. Brad Tinkle. Thanks I Hate Bananas. Peregrine, so sorry you are having the pain that goes with this. I did use the Crinone Diamond which is a natural progesterone. I also read that I can get a different prescription which is half the dose if I start to bleed too much again. But am not going to take it unless I have too, but everyone is so different I've noticed when it comes to taking anything. But it seems most of us are very sensitive to the hormones in any form. But that's great to know that Issie can take Estro Sense. That's hopeful for me since she and I have a lot of the same sensitivities. Emma, I'm so sorry to hear that this put you in a wheel chair. How are you doing now? I hope you are feeling better. Maiysa

This was a turn down from my initial application that dates back to 2007. Wow. Since 2006 I've had a severe lung fungal infection that took them 18 months to diagnose and had to be treated for 3 months with intense medications that made me so seriously ill, made my eye lashes fall, eye brows and a lot of my hair fall out. I lost 17 pounds and looked like death because I was very close to it. This was when the POTS was so bad I could not even stand for more than a few minutes for 3 years after. Then developed thyroid cancer and toxic thyroid that took them almost a year later to figure out. Two surgeries, radiation and a tough time regulating my thyroid I'm cancer free. But was still sick. Then finally the diagnosis of autonomic neuropathy, orthostatic intolerance, with serious dysreflexia on occasion, and now a tryptase level of 11.6 and now hypermobility and they still think I should be able to get a job. They said there is no reason I can't work at a toll booth. WE laugh so hard at that. Whenever we go somewhere and we see a toll booth my husband says, we should move here, you could get a job. Anyhow, I'm going to write to congress. On my second lawyer. Also, one of the reason that they turned me down was they said patient says she had thyroid cancer but in 2007 doctor felt her neck and said he was not able to feel anything. Ummm....since when can you feel cancer. I was sitting in the court room with a huge scar on my neck, I didn't get that. And then they said the blood test wasn't positive for a fungal infection so they can't say I really had valley fever. Oh my gosh, that made me so mad. 35% of the population doesn't show a positive blood test but it was obvious on my lung CT scan and by the hole in my lung. Unbelievable that they are even able to reject me on these ridiculous comments, especially when there were notes after notes from several doctors as to how sick I was. But the letter did say that they don't deny I am probably not feeling good, but I can work. Also, the judge said I looked great. That's usually a compliment, but when he said it, I knew what he meant. Evidently, having 4 rare and serious illnesses and cancer isn't enough to make someone not hold a job. Right now just to write this I have to have the computer set up high and had to get a separate keyboard to type on and have to write in segments due to neck pain. So if anyone knows of a toll booth that i could lay down in to work let me know!!!! I guess I will be applying. Maiysa

I love a good sale. Thanks Issie.

I'm really sorry Peace. Issie had some great great advice. I agree with her. And for people whom have an extended illness, I have found this to be very typical, unfortunately. I had lived here for about 6 years and after I got sick friends slowly started disappearing. I was told that one of them said, "if the doctor hasn't found anything by now, how sick is she really?" First of all, it was obvious I was sick, I am a middle aged girl, am 5'6" and got down to 113 lbs. I had lost 17 pounds and looked terrible. And weeks later, I found out I had cancer and a hole in my lung and a serious infection, on top of the dysautonomia and mast cell that were yet to be diagnosed. I was so ill at the time and felt quite abandoned. You learn a lot about people when you are sick that's for sure. Anyhow, I moved on, but it was hard. I still have my friends from when I grew up, and I focus on them, but they are far away. So after I picked myself back up, I joined a local church group and found great support there. I also invited people over for tea and dessert whom I just knew in passing and have made some great new friends this way. And I would like to say, in my past friends defense, I think that until one goes through all of this, they can't understand what we live with on a daily basis. It really is an invisible disease and so hard for others to understand. And I know it was depressing and very hard for them to see me not the same silly girl I used to be. I think it wasn't easy for them. But I feel terrible for you. Hang in there. It will get better. Maiysa

Just bumping this up to make sure everyone has a chance to get the book while it's on sale.

Lyn, Oh my!! That is a lot of great information. Good for you!!!! Thanks Naomi for the support. I think I had a 48 hour melt down. The pain has been incredible. And then I got turned down for Soc Sec for the 4th time all at the same time, that didn't help. OH well. I guess having chronic valley fever, thyroid cancer, toxic thyroid, autonomic neuropathy with orthostatic intolerance, mast cell and now hypermobility, constant migraines isn't enough diseases in 5 years that would cause one to not have to work. Wow. I know if that judge had just one of these he would not go to work!!!!!!!!!! Okay, sorry to vent. Anyhow. Claire, I'm so sorry you are going through this. There was a time when I couldn't stand up for any length of time or even sit up to barely eat without passing out. I feel for you!!!! Hang in there. There is hope that that stage will pass. I will search for the MCAS criteria. I just had it the other day. Sorry to make you wait so long. Maiysa PS also there was a conference just not long ago where they were trying to make the criteria official. I think it was held in Texas or something. Hope I'm not getting it confused with ehler's danlos conference. But will check.

Haha, Issie, I didn't know I was supposed to clean out the messages. I too have never been able to use progesterone. I ended up in the hospital from it in 2008. It made a b-line straight to my heart and caused it to go to 200. Yikes. But this time I just used a tiny tiny amount, as an insert daily and only 1/4 of the recommended dose daily and it helped to stop my cycles. It was either that or surgery they told me. And thankfully it worked. I only took it for a few weeks too and that was over 2 months ago. What a miracle. But of course now my joints are on fire! Trach, I just read in Dr. Driscoll's book the Driscoll Theory Part 2, that estrogen is also a vasodialator and can cause headaches in POTS. I was having terrible migraines for five months before I took the progesterone because my estrogen was very dominate, it helped with that, but it seems I put one fire out just to start another. Sort of a Catch 22. I remember in the article that I posted that it is a matter of balance of the two hormones. Don't take one without the other. It would probably be so nice for all of us to keep our hormones regulated.....but so hard to do when our systems are so unbalanced anyhow. I have been drinking just a tiny amount of soy milk and eating a few edamame beans and some yams just to add a tiny amount of phyto estrogen since I'm pretty sure the amount of progesterone they put me on seems to have wiped out any trace of estrogen since my periods are gone for the past few months. But it's been such a nice break anyhow. But sorry your daughters are having to deal with this as well. Ugh... What a mess this disorder is. Hope you all feel well today. Maiysa

Diamond, I just went in there and cleaned out my messages. I guess I had not cleaned it out since I started this site. Sorry about that. Hope you are having a good day!!!! Maiysa

I posted this on another site, but thought some could use this information. I was recently diagnosed with hypermobility possible EDS 3 and I've been in terrible pain lately. I always have pain, but it has intensified almost suddenly. From my education I remembered that estrogen helps to stimulate collagen and produce it. I had recently used a progesterone female insert cream to help stop severe menstrual bleeding. And it helped but did notice that my joints are in much more pain than usual; a significant amount more since using the cream. Anyhow I researched this idea that maybe the progesterone inhibited my estrogen causing more pain and found this article: Medical: HORMONAL ASPECTS OF HYPERMOBILITY August 5, 2009 Dr. Bird, a leading expert on hypermobility has written about the ‘Hormonal Aspects of Hypermobility.” As always, we will only be quoting excerpts from this article, even though it is now available online (see link below) “Although oestrogen tends to stabilise collagen, progestogens loosen it. Many hypermobile patients, though not all, noticed a worsening in symptoms, more pain in the joints, clumsiness or a greater tendency to dislocate in the five days leading up to menstruation and in the few days after menstruation. This is exactly the time when the progesterone compounds far exceed the stabilising oestrogen compounds…. ” Women who have increased pain during menstruation usually notice this after their period has become irregular which means that the estrogen/progesterone ratio may be off. His suggestion? Avoid progesterone only pills or “progesterone depo contraception preparations or … mechanical devices impregnated with progesterone.“ But he also points out that this is not a one size fits all answer. Some women cannot take estrogen contraceptives, in which case he suggests trying a different kind of progesterone. More importantly, you need to discuss the pluses and minuses of your contraceptive choices with your doctor. Handing your doctor a copy of Dr Bird’s article would be a good start. If you live in the UK, the article is part of theHypermobility Leaflet Pack. And what about post-menopause when estrogen vanishes and the potential for pain increases? Will hormone therapy help in spite of the risks? “Since the oestrogen amount [during HRT] is very small…..[it] is often not enough to provide a protective effect for the joints.” more here

Claire and LInda, I just read your post and it made me laugh because I just said the same thing to my husband, done chasing this crap. IT gets really old with these doctors. Anyhow, just got back from an MRI they thought my brain was bleeding. I can guarantee it's not. Just part of this disorder, won't know for sure till Monday. But I'm not worried. But my neck and head hurt. But it was a 3 hour ordeal and the insurance and the referral and the authorization got messed up. Anyhow it was chaos and I just started crying because I'm so over this. So over the red tape. Anyhow, it worked out and I got the MRI, but I swear I want to move on with my life and just deal with this disorder. It's consuming my life. So after I get answers I just want to move onto acceptance. I know we all do. Anyhow, what I was going to say Claire before my rant, is that I think 4 tryptase is usually positive. What I did was go on the mast cell forum and posted on there that I looking for a doctor in the southwest. Luckily someone came on a few weeks later telling me that there is.....hallelujah...a doctor who is in the southwest area who is familiar with mast cell. What a lucky strike for me. And he ended up being on the same insurance and not very far away. IT was a miracle. But I will list the forum for you Claire. Good luck. Let me know if you have any other questions. Maiysa

Hi Linda Joy, I'm not sure how old the paper was that Dr. Driscoll wrote, but I see in her new book The Driscoll Theory Part 2 she says that POTS is a symptom of Mast Cell and she also added EDS. Now her theory is that Mast Cell might have the capability from birth to actually change collagen fibers, hence EDS 3. This is all very interesting isn't it. Lots of new information for us all.. So I was constantly asking the chicken or the egg, but from what I'm reading it sounds like the mast cell issue is actually coming first. She also adds hypothesis from other doctors. Some very interesting research.

You're welcome Issie. I hope it helps!! Future Hope sorry you can't do the antihistamine diet. I don't follow it 100% but I do my best. Sample of my daily diet just for today to show no loss of nutrition here. For me if there is a will there is a way. haha. I don't have much of a choice. My mast cells are a little bit higher than most. Breakfast: Scrambled Eggs and gluten free toast Coconut Milk or Almond Milk Lunch: Leaf Lettuce salad with green apples/spoon full of feta (feta cheese is okay according to some)/walnuts/ Grape seed oil with lavender herbs for dressing and a slice of fresh cooked chicken Snack: I juice kale/apples/pears/carrots and a slice of ginger with alpha lipoic acid and vitamin E and also take my vitamin D tablet at this time. I alternate my veges. But no more spinach. Dinner; Salmon tacos w/gluten free wraps or corn tortilla's and with my own seasoning/ with vege topping. No cheese though. (Salmon is the only fish that doesn't make me flush and I was sure to take a children's claritin with it just in case) Went out for frozen yogurt tonight, but I just had the key lime sorbet instead of dairy and it was delicious!!! See no lack of nutrition here. haha. But it is different for everyone with their sensitivities. And I eat all day long. It wasn't much of an adjustment really except for the spinach. I think that was really making me flush. So that's my sample low histamine diet....except the salmon tacos were really cheating for me, chicken would have been fine. Good health to all

Trach I have occipital neuralgia also, I will PM you later to ask you more about your treatment if you don't mind. I'm on my way to physical therapy. NOt sure how it's going to work. I did have nerve block in the 90's and it made me sick for some reason for about three months. I couldn't take a drive in the car without throwing up. My doctors said that's really unusual. Maybe things have changes since the 90's. Anyhow, don't want to take over Diamonds thread. :0 Maiysa

http://www.chronichives.com/pages/lowhistamine.htm This is the list Issie that the mast cell forum uses. This diet is actually for the type with the skin mast cell issue. I don't agree completely with the list, especially since it allows grains and milk. I was reading on several medical journals that they are finding a huge mass cell releases in anything wheat. So not sure why they would allow this on this diet. I will post that article too. Very interesting. Also, I'm surprised milk is on there since I have heard it's also a histamine releaser. Also, I read further into the egg thing and it's actually raw eggs that release histamine or over easy. So scrambled is okay. But everyone is different. I noticed it said to avoid cherries. Cherries actually make me feel better, maybe because they are full of anti inflammatory properties. But anyhow it's a good start. And here is another helpful list. It's from a gluten site and a rosacea site. But basically it's the same thing. I also found out that foods you are allergic to is something a little bit different. These are just foods that cause a histamine release, which I would think could also be an issue for general allergy suffers. Just going off of my experience with food allergies as well, since a few of mine are on here as well. Hope this helps. http://www.reverta.com/blog/histamine/top-10-histamine-containing-foods/

Hi Diamond, Aw, you have 4 schnauzers. You are so lucky. I told my husband I want to get mine a companion and he is not on board. As much as he loves Maddy, she is a handful, and he is over it. haha. Mine is what they call a salt and pepper party mix. (is this what yours are as well?) I guess they are a little rare. I had no idea when I got her. Since I'm home sick all the time, she has been my constant. IT's so nice. No, I don't have diabetes and I feel terrible for you that you have that on top of everything else. Ah..this is very hard isn't it. But if you look up mast cell, just google mast cell activation disorder. Sometimes they put the worst symptoms up and it makes one think, I don't have that. Which is exactly what I thought for years, but I went and got tested and it might be the more difficult type. I was so surprised. I'm still in the middle of testing and being diagnosed. I can find some information if you would like. But there is a lot on google also. For me it causes flushing and itching and sometimes for the orthostatic intolerance to become worse. I take children's claritin because that's all I can take and it has helped. But with all of your issues, please ask your doctor about this first. But something you could look into is the antihistamine diet. There are several but I will find the one that is the diet most mast cell people use. I didn't realize I was eating a ton of histamine foods making me worse. Some people don't show an elevated tryptase level, but it doesn't meant they don't have it as there are other measures to diagnose mast cell activation disorder. There are also several types, so don't let that scare you. The worst ones are usually very rare. So you would want to look into the mast cell activation. But I showed a high tryptase level and still some doctors are not aware that they have changed the criteria and that it doesn't have to be high at all or even positive. But mine was I guess would be considered a positive. IT's a very simple blood test that you could ask your doc about. Tryptase. Just a week or so ago I was diagnosed with hypermobility. So am also trying to find a doctor for that as they said it can be EDS 3. Or at least that's what others say. My sister also had sort of rubbery joints till she was 4, so I guess that makes it even more likely. But I don't know much about this disorder yet. Am still learning. Okay, have a great day. Maiysa

Hi Rama, yeah, I'm not going to go out and get surgery or try any medications any time soon. But I love all of her information that she has. I didn't realize that she had surgery. Wow. But bless her heart for taking one for the team and trying. I've only read a few chapters and I'm going to go get a neck collar today, that can't hurt. My doc prescribed one a few weeks ago but told me not to wear it too much. I will see how that works since my neck is my worst issue right now. I tried on several neck collars and none of them fit. My neck is too long and scrawny. I might have to go to the zoo to see if a giraffe has one he doesn't need. PS I know someone who did try the diomox and it didn't work. Of course we are all different. Maiysa

Lindajoy, I wanted to add that I'm just now in the middle of the Mast Cell diagnosis. You are all so lucky to have access to Dr. Afrin. I wish I was so lucky. I mentioned that a doctor here said don't worry about it even though my numbers are even past the abnormal level on a blood test. Anyhow, since it's taking me about 5 months for an appointment locally here, I have been reading about anti histamine diet. And wow, it's amazing what going off of those foods and taking a just a bit of claritin has done. At least for the flushing and orthorstatic intolerance. I was juicing in between meals and drinking over 2 cups of spinach a day. I love spinach. I found out it's the biggest histamine contributor. It was hard to go off the spinach. But I found other veges, but you should read the anti histamine diet that is on the internet. IT's the urticaria site that has a nice list. I can post that for you if you can't find it. But it has really helped. I didn't think it did at first, but it took several weeks to get it out of my system. Let me know if you have any questions. Boy you sparked quite a debate. haha. But it's all good for us to hear each other. So nice to be able to have a place to go to do that. Maiysa

Wow, that seems to be an every day occurrence on these blogs lately. That and mast cell. I'm hypermobile but doc didn't say anything about EDS 3, so contacted someone from the EDS 3 an said Hypermobility is the same thing. That's nice to know lillybits. I have also been told D3, but don't take the one made with shellfish, some are sensitive. I can't take Coq10. Hmm. That's a bummer. And I will check out carnitine. Didn't know that. Thanks. And Cat Lady I have 2 children and one is 30 and is healthier than a horse. The other not so much, he has Crohn's. Not sure if it's related. But maybe. Just to let you know. Maiysa

I was reading back at some of these posts. My son has Crohn's and I was reading that they are finding large amounts of mast cells in crohn's patients too. I don't have POTS, but autonomic neuropathy, but my mast cell level or tryptase is 11.6. And I'm quit sick. But the doctor here told me not to worry about it. So I'm also grateful for doctors who are accessible for those who can't get out or who are stuck with doctors who don't think 11.6 tryptase is a big deal when it clearly states on the blood test that it's an abnormal reading. But I understand Rama's suspiciousness. I have also read that mast cell activation isn't as rare as they used to think it was. But don't know what that means. But that mastocytosis is still rare. And of course that's only one articles opinion. Sometimes it's best to wait to see what WHO says. (World Health Organization) I hope that makes sense. And just having a tryptase level that is elevated is also supposed to mean that it's positive for some sort of mast cell issue. I think the criteria used to be 4 but I think they have even lowered that. And Bren is right, even if one does not have an elevated tryptase level and has all the symptoms and if they respond to Claritin or an H1 & H2 inhibitor, they are calling it MCAD. IT's just that some doctors are not aware that they changed the criteria for Mast Cell. So reading a blood test would make sense on diagnosis if the symptoms are also there as well as POTS or some form of dysautonomia. I also heard that they are having a summit or conference where they are going to try to agree on what the official WHO criteria is for EDS 3 also. IT is supposed to be happening soon. There is also new information on this disease that doctors are not aware of as well. I know this because I went to several doctors trying to get a diagnosis after being diagnosed with hypermobility. A few used the old criteria for diagnosis. And I can't blame family doctors as things are changing non stop with diseases. It's easier for us to be aware since we are watching and reading articles to help ourselves and our own disease. Doctors have so many patients now days too. At least here they do. From what I read EDS 3 is genetic, but interesting that we are all having a lot of these same issues. But what came first the chicken or the egg? Mast Cell, EDS or Dysatuonomia? I think they will have answers very soon since some studies are now being done because of all three of these rare issues showing up in a quite a few of us. Good health to All. Maiysa