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Actually my daughter was with minimal SE but she also got sick one month after stopping the drug. I have wondered about that

Hi I want to add a thank you Mack's mom as well. The information you provided, MD names, etc have all made a huge difference for my daughter. She got sick 10 yrs ago this month (right after 9/11). I can't believe how far she has come. Louise

Hi Dana Regarding "Chelation is sooo difficult on my body and I think the reactions I get from it are proof enough "; it could also be proof that chelation is bad for you. Just a thought - I admit that I think chelation has little science behind it. Louise

Unfortunately - EVERYONE with these illness gets told this at some point When my daughter got sick, they said it must be mental because she was not getting better - what does that mean. She went through 5 - yes 5 separate psych evaluations. Each one said they thought this was a physical disorder SOOOO the pediatrician would insist on a 2nd, 3rd, 4th then 5th opinion. THEN one of psychologists LECTURED ME that I needed to be more assertive with the MDs since it was obvious this was a medical conditon!!!!!!!!!!!!!!!! I thought I would loose my mind!!!!!!!! WE could not win!!!! I see this all the time with pts. I am a nurse midwife. Pts with chronic pain are told it is "stress" all the time. Sorry you had to go through this but it is thw way MDs are taught. If in doubt - blame the pt. Louise

I know that for my daughter - dietary restrictions have made a huge difference. In 2006 , an immunologist/allergist dx her with wheat (not gluten), soy, dairy, egg, and peanut sensitivities. This was based on IgG blood tests. He said it was not an exact science but to try dietary restrictions to see if it helped. It did - big time. Of course in the last few months, she was dx with MCAD by Dr Castelles and started on gastrocrom. It is the best she has felt in 10 yrs. I want to recommend a wonderful cookbook for those with food allergies/sensitivites: The Allergen-Free Baker's handbook by Cybele Pascale. The recipes are amazing - good even if you have no food allergies. I could not believe the banana cream pie!!! Louise

For those pursuing mast cell disorder, my daughter, Rachel, has been on gastrocom for 2 weeks (along with her other meds). She says it is the best she has felt in 10 yrs. She able to do aerobic exercise and not crash. Very exciting!!! It has been almost 10yrs since she got sick - 5 of those years were homebound. She has made steady progress over the 5 years with meds, diet, lifestyle modication and is attending grad school full time. There is hope!!!!

Hi Unfortunately Julie is right - seeing a mast cell specialist is the best idea. My daughter, Rachel, has had several visits with Mariana C Castells, MD in the last few months. Rachel has added MCAD to her dx list and more meds: gastrocrom and something else that I can;t remember right now . RAchel is in grad school in Boston so it made it a bit easier for her to get into see Dr Castells. Good thing I kept her on my insurance - the tests and meds are pricey and would not have been covered by her crappy grad school insurance. Rachel was impressed with Dr Castells - kind of the "Blair Grubb" of mast cell stuff. Good luck!! Louise

I have thought that this is the basis for my D's POTS for a while. 6 months before she got sick, she started having random severe flushing episodes and gastointestinal problems. She is now living in the Boston area. She has an appt with Dr Castells in Feb. (FYI Dr Akins, formerly at U of Mich, is now in practice with her). Rachel already takes H1 and H2 antihistamines and is on a restricted diet. She was dx with food allergies/intolerances 3 years ago by a pediatric allergist/immunologist. It has really made a huge difference in her life. I am hoping Dr Castells can fine tune her meds and maybe add gastrocrom. I am so grateful that this site introduced me to this aspect of POTS. Louise

Aquadiva This is a common problem. Many docs (even so called dysautonmia specialists) don't know the drugs. It is the reason we go to Grubb. It seems that alot of people do not do well with the beta blockers. For my daughter, the order was florinef and wellbutrin xl,midodrine, mestinon. I do not understand why these docs have not read the research out there. I was able to get someone local to start the florinef (she knew Grubb and thought highly of him). Of course, she 1st wanted to know if we would like to wait and she how she did on her own. At that point she had been homebound about 2 1/2 yrs and used a wheelchair alot. Uh - no Louise

Very reassuring!!

http://www.theheart.org/article/1119697.do More confirmation of the FDAs decision

Hi Julie Does he have(or had) an IEP, SSI etc? If so that makes it easy. Otherwise I would ask the scholarship what documentation they require. I expect a letter from his doctor would be adequate Louise

(((((Caterpilly)))))- For my daughter, we found low doses of alot drugs works best for her. Midodine is only 2.5 mg 3-4 x.day. Mestinon is 30mg 2-3x day. Florinef is .1qd. wellbutrin xl 150. Lots of H1 and h2 drugs. Diet management. She started each med at a 1/4 -1/2 usual starting dose. She would up it until side effects bothered her. If she noticed ANY benefit at the lower dose, she stayed on the drug while we added a new one. Diet is very important for her. This seems to be different than doses alot of people use but it took from homebound for 5 yrs to school fulltime (though suffering miserably this week . Louise

I have no idea what they mean about a test!! The health care organization I work for does 100s of IUDs each year. I suspect they try sounding 1st but I see no point in that at a separate visit. That is done at time of insertion. If you can not sound then; then no insertion is done. (sounding is using a narrow device to see if you can enter the uterus far enough to place an IUD). Doing that at a spearate visit before hand only increase cost and pain. I don't think this doc does many IUDs. Trust me experience helps with insertion!!! I don't see a big demand for implanon. For those who want it, I suggest a trial of Depo 1st, similiar side effects and no incisions involved. EMAIL me and where you live; I may be able to offer you another place for a second opinion. I really recommend a second opinion. No offense but I am not impressed with the options your MD is offering and his education on these issues. Print out someting on POP and call you doc. He should be able to start you on that immediately. Geez I can't believe how complicated some docs make this stuff. I have to say lots of docs in private practice send their pts to us for IUDS because of our experience with them (using we do them cheaper too since we get a volume discount. Louise

While I agree that some cynicism is appropriate; there is also reason for optimism. I will continue to monitor the situation but I am still celebrating!!!

I can not stop crying!!! I am so happy!!! Wow. My daughter has been having a hard time with her move. Heat and idiots who don't follow through on promises to help have really taken a toll on her. I too far away to help and it is torturing me. At least this worry is done. I AM SO PROUD OF US!!!!! Louise

Wow, something I can offer some advice on I do ALOT of IUDs. In fact, I inserted 2 today - 1 paragard, 1 Mirena. Both never had children. It is like everything some like them, some don't. It certainly hurts going in but it only takes a couple of minutes. Most women are ready to go back to work afterwards but I expect with POTS; probably not. The research indicates little systemic absorbtion with the Mirena but I do have pts who complain of "hormonal" issues. I expect that there are exceptions for everything and some might absorb more hormones than others. My clinic does 50-60 iuds/year!!! Many in women with no children. There is a increase chance of expulsion if you've never had children but not greatly. Things like perforation - rare with an experience clinician. Imbeded - rare too. Geez- I can't think of any IUD in 15 years that wouldn't come out if I could see the strings I do suggest inserting an IUC on your period if you have never had children but they can be inserted at anytime if there is no chance of pregnancy. Some clinicians will use misoprostol before an IUC to ease insertion - I am not impressed so far.(taken either 12 or 1 hr before insertion: it can soften the cervix. Stacie You could also take a progesterone only pill (POP) like micornor/nora b. FOr some reason alot of clinicians forget about them. WHile not as effective as estrogen/progestin pills, they are still highly effective (95%). My former clinic did essure - for most it is a pretty simple proceed with severe cramping for a 1hr or so afterwards. To be honest, from what you have told me, I would suggest a progestin only pill while you consider your options. Louise

Yes Erik - thank you for the laugh!!!

I love the " Dismissive Attitude Board " that would be a great idea. Unfortunately, this is what I expect of most clinicians and chronic illnesses. No ability to see the impact on peoples lives. Sorry you had that experience. This is why 1x year I take my daughter to Dr Grubb and Bev Karabin PhD in Toledo. I can;t take the chance of idiots - it is so discouraging. Louise

Shire is officially done with midodrine. Contacting the generics might help but I think the FDA is our best at this time. Louise

"Meet Dr. Robert J. Rowen ? the groundbreaking M.D. who?s trained over 400 doctors? cured over 5,000 patients?and helped pass the nation?s first medical freedom law " Hi Is it this Dr Rowen? I have to admit after visiting his web site, I think he is a quack. The more DRs promise the less I believe. Shoot, I am a nurse midwife. I have cured over 5000 people (of chlamydia, trich, BV, and yeast). I have also trained more than 400 graduate nurses and residents. So has almost all working health care professionals. Just my humble opinion. Now, that does not mean he is never right but I run from miracle workers. Louise

I also sent an email to Public Citizen Health Research Group. Their MD thought the FDA removing the drug was a good idea. I emailed them to tell them why they are wrong. It is one more place that people might want to contact. The issue with the drug is not safety or effectiveness: it is politics of our healthcare system!!! Louise Thank you for contacting Public Citizen. I understand that you do not want the FDA to withdraw the approval for midrodrine. I will forward your email to our researchers. Again, thank you for contacting Public Citizen. Sincerely, Ben Weaver Consumer Correspondent Public Citizen Health Research Group Health Research Group Public Citizen 202-588-1000 hrg1@citizen.org http://www.citizen.org/hrg http://www.worstpills.org

I have mailed letters, emailed and called Shire, generics, 2 people at FDA, my congressman/women, one FDA petition. I can't even believe this is happening - it is a critical drug for my daughter. Very frustrating!! Louise

I also contacted my congresswoman today Louise

My feelings exactly, Chaos.