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I cannot explain why the body would stop or slow making hormones, there are so many reasons you could be one of any of them. I can say that i have been on a progesterone cream for almost 6 months. I also found out that I have addisons, probably brought on by the amount of cortizone meds i have been on since i was about 8. pleasse feel free to email me offlist if you would like to chat! I am not much older than you, I turned 36 last month. Joy

this is not a diagnosis! when this happened to me, i had allergy testing done and found i was allergic to sugar. when i stopped eating sugar the joint pain and swelling stopped. if i eat it by mistake( its in EVERYTHING) it happens again for sometimes up to a week. you could try having food allergy testing. i would never have been able to guess my allergy was sugar, nor can you really do a food removal diet test for it, it is in too many things. I did a blood allergy test to find out that allergy and some other strange foods i am allergic to.

brain fog is one of the indicators to me that i am doing too much at that time and that i need to rest with my feet up for a while. It happens most for me after a meal, and when im being stubborn and don't use my wheelchair.

I did get a script for both my wheelchairs. My insurance paid for both, but remember this. if you get the travel or manual first, the insurance will not pay for a scooter or power chair for at least one year possibly more depending on you r coverage. i am not sure what happens if you turn them both in at the same time though. i went to the local medical supply and left with my manual chair that day, but the power chair that i also have took a year to approve. that means if you have a down turn and need the power one sooner than you thought it could b a while before you get it. message me if im not clear enough on this im really tired today.

my naturopath told me i was vit D deficient as well. She gave me vit D by vital nutrients.

This also affects me. I found out last year that i am actually allergic to cane sugar. I have chemical intolerances where i need to leave the room when cleaners are used, and most perfumes bother me as well. that means any fragranced product gives me a reaction, even some makeups have caused reactions. i have many food intolerances, including gluten and caesin.

This is interesting. After I come to from passing out I am in conscious paralysis for several minutes. Once it was almost an hour before I was able to move and communicate. Joy

Lindajoy, I totally wish i was there to give you a hug, it sounds like you could use one. I know the feeling of wanting this over, yet not meaning suicide. i also feel the same. The allergy to foods, that is hard. i thought my elimination diet was hard. i am sorry about the formula. are you saying you are still reacting to that? wow thats rough. about you dear husband, yes isnt it great how they come through. I am happy for you that he is supportive. that sometimes is such an obsticle, that it is good you have the support of someone who cares. sending love and good well your way the other Joy

it has been a while since i posted so here is an update on me. The car accident was 2 years ago last week, and i am in my 3rd try at physical therapy. i have regained some upper body strength, and i am so glad. i wish i could exercise my lower body better, but standing still for longer than 30 seconds when i am non symptomatic makes me nauseous and my blood pools. i am sure it is because the 6th vertebra has a bulge in the disk(from being hit by a car), but i cannot get a Dr. to put it in writing. all of them say that is making me worse, yet none are willing to go on record or a paper trail saying so. My Quantum power wheelchair was delivered on Monday. I am happy and sad. I am so happy that i will now be able to participate more in activities, and yet sad i have gotten this bad. I am ok for a few minutes, and then i am back in bed. i cannot participate in PT and also go to the grocery store the same day for example. i still have several Grey outs a day even on the meds, but i have not lost consciousness since October of 07. anytime after 3 pm though and i am a mess. i was just approved for 27 hours of a personal attendant each week to help me with hygiene, like washing my hair, to drive me around, and for household help (cooking and laundry). I am so sorry to vent to you, but i know you listen so well, and don't judge like most do, or say the "but you look better"

I was in a car accident on 2/13/06 that has caused my NCS to go into overdrive. I am expecting my power wheelchair this month and have been in a manual wheelchair since July of 2006 because of it. i did get therapy and chiropratic care for 4 months, but i am getting increasingly worse instead of better. from the accident i have a bulging disk, and my SI joint is messed up making everything worse.

when midodrine (proamatine)and florinef no longer worked for me, my cardio( who was a resident with dr. grubb by the way and co-wrote papers with him) put me on ritalin LA. i have not been unconsious in 3 months on it. according to him, midodrine is a derivitive of ritalin. i have not found any confiramation on that, but that is what he said. it cant hurt to ask.

the medication itself is not usually any different. it is the inactive ingrediants that are different. some Name brands of a med have more exact amounts of the active ingrediant in them. i CANNOT take ProAmatine. i can however take the generics, and some of them work better than others. i have an allergic reaction to one of the inactive ingrediants in it.

I was diagnosed November 2002. The first time I fainted I was about a year old according to my mother. I am now 33. I have the genetic type, my aunt has it. I am terrified I passed it on to the kids, every time they have a seizure I freak that it is the beginning of their problems. The neuro just said to keep an eye on them, since there is no way to diagnose them unless there are symptoms. Seizures are bad enough!!

hi maxine, welcome. i believe we have emailed eachother. nice to see you again!!

I have been crying all morning. I am so upset! When I went to Boston Medical Center on June 6 this year, I passed out in the cafeteria of the building next door. Since this was also a medical building, they ignored my husbands and my moms request to not call 911. I did get in to see him, and he tripled my daily midodrine. While I will not rehash that story it is important because when I finally did get into my appointment, my Dr. informed me he was taking my license away until I was not fainting for 6 months. I had already stopped driving by my own choice, because at the time I was fainting up to 3 times a day. I am so sad today. I passed out yesterday, and now I need to do 6 more months of not driving. I know it is my fault for overextending myself and that makes it worse. The kids began school Tuesday. I made an appointment for myself to go to the therapist. Not being able to drive, I took the Para transit van. I could do this I was sure. They have a wheelchair lift, so I just rolled up to the van, rode the lift and went to the Dr's. I even stayed in the chair rather than risk passing out during a transfer to another chair. The van picked me up and brought me home. That is when the problem began. I had no way to get the wheelchair into the house! I had forgotten to plan ahead to get into my house. I had 3 choices, the worst and easiest was leave the wheelchair on my front lawn, and go up the stairs bu** first. Next easiest was put the wheelchair into my minivan and still go up the stairs on my bu**. Last and hardest was to lift my wheelchair onto my porch. Wednesday I had some friends over for lunch. I knew I couldn?t clean, but I did want to sweep up the dog hair. Once I did and got out lunch, they took over and we ate. They were bringing me to a meeting we all needed to attend. This time, they took care of the wheelchair, and they were doing most of the pushing. When I got home, I took a nap. I was tired. My kids woke me up yelling? the bus driver won?t let Niko off the bus, you need to come out? I had been expecting him home, and had a bottle of Gatorade on the bed table. The kids scared me out of a sound sleep, and I jumped up. When I got to the door, I passed out. When I came to; I was half on my front porch, and half inside my front door. I hit both the screen door and the front door on my way down. My oldest said I bounced off the screen door, and hit the back door before I hit the floor. The only silver lining is that my DH has agreed to get a wheelchair ramp for the house. Until now he did not get that sometimes just standing up to go up the front stairs was enough. He felt that being in the wheelchair the rest of the time should be enough so I could get in the door myself. Now I just need to figure out how to get the $$ and the labor to build one. He was so adimate we didn?t need one, I never did any work on actually building it. Joy Mom to 4 kids Broc SDiT Teach your children well, they will decide your future!

no, this is how i feel too. even a wheelchair ride for an hour makes me feel this way. it is hard, because some times i have trouble making people believe me as well. I have not fainted in a month and a half, so sometimes i get so sick of hearing how im doing better so when will i be able to do____? they do not get that the fatigue is worse, and think i am just trying to get out of doing whatever they want. i was always the go to girl for whatever needed to be done. Joy

>Dear Laura; >I just wrote to the group (somewhat behind) asking people to not forward that >information (the copyright belongs to the group not the person posting the >email to the group) and then I saw your email saying forwarding is fine. >Usually I let the person sending an email to the group decide if forwarding >their email is okay. I am sure that by now many people have already forwarded >your email. I hope that everyone who did that will also forward what I wrote >(permission hereby given) so that everyone will understand that the policy in >your email is just words at this time and not what is actually happening on the >ground. Sincerely yours, >Fred Shotz >Group Owner >OT-ServiceDogs > > Dear Joy; > > I am not approving forwarding of any email from this group that addresses > the issues of airport security screening or any information posted to the > group that is from the TSA or any other government agency. Reading what the > White House sent out will simply provide a false sense of security and I do > not want to provide information that misleads people. > > Regardless of what the White House sends out and regardless of what the TSA > publishes the 42,000 TSA employees performing airport security screening > have not been properly trained in these new policies. In many cases it > appears that the TSA supervisors have not been adequately trained in the new > policies. Therefore no one can predict what will or will not happen at any > given airport. What might not be a problem at one airport could easily be a > problem at a different airport. What might not be a problem at one security > location within an airport could be a problem at a different security > location in the same airport. > > The TSA is stonewalling calls about civil rights issues - not even answering > the civil rights complaints phone number. Mr. Cantos has yet to reply to my > email or to return my phone call. So all we have is their PR release of a > policy with the people enforcing the policy having not even seen it. If > anyone things that you can show a TSA supervisor a print out from your > computer purportedly from the White House and do what that print out says > has had little or no contact with the TSA and how they work. > > > Sincerely yours, > > Fred Shotz > Group Owner > OT-ServiceDogs > > > > > > > May I have permission to post this on my dinet.com page? Some of them are > > very worried about travel. I will remove all information related ot > > ServiceDogs . > > > > Joy > > > >> > >> In response to some postings concerned for air travelers W/disabilities, I > >> forward the following. > >> Regards, > >> Laura > >> =============== > >> > >> FR:Olegario D. Cantos VII, Esq. > >> Associate Director on Disabilities > >> Domestic Policy Council > >> The White House > >

Please look up psoriasis before you get too worried. It is more likely to be any other type of dermatitis. I have psoriasis, and your skin doesn?t peel off unless you have a very severe form, and then it is because the plaques have been dislodged, like a scrape. Here is a link with what it is and with pictures: psoriasis net There are other types than mine that I do not know as much about. Chances are if it is only on you palms and the bottom of your feet it is not psoriasis, but something else. Those are two places it usually doesn't go. They told me it wouldn?t be on my face either but it is. Ask a dermatologist if you have any inclination it could be psoriasis because having an autoimmune disorder is often co morbid with an autonomic disorder like POTS or NCS.

This is an interesting link. (I will be reading it quite closely to see if and when changes are made to it. it has changed since I read it last.) You are correct the MMR II has no mercury. But, please look again. This is the M-M-R-II (M) (M meaning Merck the company that produced it). It is another vaccine from what I am speaking. If you read the header of your example table #1 it states Updated 7/18/2005 this does not say anywhere there was not in previous vaccines. Please look again and find me something on the MMR. As I said, I am speaking of all made pre July 1999. We obviously were speaking of 2 different vaccines. You are treading very close to my home in saying MMR is not related to autism. I hope I am just misreading your post. This, however, does not give you any right to say in totalitarian terms that MMR does not cause autism. No one knows what causes autism. Since you have stated your current job, I hope this is not my elected official ( you have not stated your location, so I do not know who they are) because I would have to make sure to tell them where I stand on this issue, and I would hope you would not be giving them this incorrect stand on the issue. Since you have stated this is your job I hope you do some more study on the subject. 1 in 166 children has autism. I am sure there are some in your area. If your congressman is that concerned with the environment, perhaps he would like to look into this further. I would be more than happy to help in that regard, as no matter what state you are from, any work on autism is good for all of us. I stand on the fact that my son has autism. It began following a MMR vaccine. They are related. How they are related will probably never be found, because of people that say they are not connected. Your comment that there is no possible way is out of line. It is people like you that make that assumption that have caused my family and many others great pain. Please refrain from stating your opinion as fact. It is in the rules of this forum. We may disagree on anything and I enjoy the debate, but refrain from using your opinion as fact.

i have been following with great interest. i am wishing you the best on this special day and thank you for sharing with us. please get pictures!! Joy

This is an interesting reply lthomas. I am interested to find out more information on why you are not concerned about a heavy metal that has a national recall of thermometers because of its negative impact on the water supply near all landfills. I know there are many things to worry about but this one that something can be done about. Is it that you are not personally worried for yourself or are you not concerned with the impact this has on others, on health in general, or on our planet? While I also have amalgam fillings that I received before knowing any better I await the time when I have the funds to replace them. If I never do I am sure I will be fine, it is simply my preference. I am very interested in where you got this information that there is no Thermosol in the MMR vaccine. Please send any verification you have because you are incorrect. The MMR did contain mercury. It was used as the preservative. You are correct in one thing. New vaccines are not prepared with the Thermosol.(some flu vaccines are still prepared with it.) We have been speaking of the ones already given to our children. They have been in use since the 1930's until they were stopped in July of 1999. it is unfortunate that since not all of the doses have been used, and the FDA has approved their use until they are gone or have expired so many uninformed(by this I mean that the dr. does not tell the parent at the time of injection) parents are still giving this mercury laden vaccine to their children The individual vaccines of measles mumps and rubella do not contain the mercury preservative. In order to protect my other children I have used the single vaccines spaced one month apart. Please do some research on this subject. I would like proof. Prove me wrong. The vaccine given to my son listed Thermosol in the ingredient list. Please find me one made before 1999 that does not. I await your response. If I do not hear from you I will expect it is because you have seen that your opinion is not fact. I am sending a copy of this post to you in a PM as well, so I can be sure you see it. I have not said on this forum that vaccines do not have their place, I did say to be careful and selective in their use. Joy

Usually once the swelling goes down you will feel better. Some problems could be longer lasting depending on if there was damage to any brain cells. I was diagnosed with NCS after 2 falls and 2 concussions in less than a month. When I went to the ER with the second one, I was kept in the cardiac unit for a few days because they finally listened to me about the fainting. It was about 4 years ago, and I still notice some lasting effects, switching letters, or words in a sentence. Sometimes it is laughable, but not being able to do some things without having to really think about it is annoying.

here is a post i recieved from another email group. it is being reposted here with permission from its origin. Joy FR:Olegario D. Cantos VII, Esq. Associate Director on Disabilities Domestic Policy Council The White House - - - - - - - - - - Hi*****,. As you may very well imagine, the developments in the United Kingdom whose details were announced early yesterday morning (also see below) have given rise for heightened security at all of our nation's airports. Amidst all of the adjustments resulting from immediate changes to security check-in procedures, the Bush Administration remains mindful of the needs of travelers with disabilities, those with medical conditions, and mature persons. Shortly after public revelation of the situation abroad, the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities(ICC), led by the Department of Homeland Security (DHS) activated its Incident Management Team, composed of agency leaders from across government. As a result, within hours, a statement was drafted for distribution to members of the general public. This piece was the result of involvement by the disability arm of the White House Domestic Policy Council, members of the ICC, and two internal DHS components -- the Office for Civil Rights and Civil Liberties and the Transportation Security Administration. We urge you to distribute the following information as broadly as possible. We also recommend that air travelers print a copy of this email and have it handy for on-site reference. The information below re-emphasizes that assistive technology, mobility aids, medication, and other items used by members of the disability community and others continue to be permitted beyond security checkpoints. Details are also provided on where to call or email to address related concerns, resources to visit for further information, and steps that individuals may take to make the security check-in process as smooth as possible. I want you to know, Donna, how grateful I am to you for spreading word about what follows. Doing so will have the collective effect of preventing difficulties from occurring at the outset while providing the traveling public with specific resources to assist in addressing issues of critical concern. Warmest wishes to you, as always! --Ollie - - - - - - - - - - Over the last 24 hours, British authorities have arrested a significant number of extremists engaged in a substantial plot to destroy multiple passenger aircraft flying from the United Kingdom to the United States. The Department of Homeland Security (DHS) is taking immediate steps to increase security measures in the aviation sector in coordination with heightened security precautions in the United Kingdom. The nation's threat level has been raised to Severe, or Red, for commercial flights originating in the United Kingdom bound for the United States. To defend further against any remaining threat from this plot, the threat level has been raised to High, or Orange, for all commercial aviation operating in or destined for the United States. The intent of this message is to alert potential air travelers with disabilities, those with medical conditions, and the mature of the elevated threat level, encourage them to take proactive and necessary steps to alleviate potential adverse impacts, and provide connections to further information and assistance. The following quotes are extracted from DHS Secretary Michael Chertoff's press conference yesterday: * "In light of the nature of the liquid explosive devices which were designed by the plotters, we are temporarily banning all liquids in carry-ons in aircraft cabins. That means no liquids or gels will be allowed in carry-on baggage. Any liquids or gels have to be checked as part of baggage to go into the hold. There will be exceptions for baby formula and medicines, but travelers must be prepared to present these items for inspection at the checkpoint, and that will allow us to take a look at them and make sure that they're safe to fly." * "Today, air traffic is safe. And air traffic will remain safe precisely because of the measures we are adopting today. People should be patient, but they need not cancel their travel plans. They simply need to be aware there may be some delays and they may want to check with their carriers to see whether they ought to adjust their arrival times at airports." Overall guidance to travelers with disabilities is located on the web site of the Department of Homeland Security's Transportation Security Administration (TSA) at: http://www.tsa.gov. This guidance includes tips specific to those with disabilities and medical conditions. TSA's Checkpoint Security Screening Procedures for persons with disabilities, individuals with medical conditions, and the mature have not changed as a result of the current threat situation. All disability-related equipment, aids, and devices continue to be allowed through security checkpoints once cleared through screening. Items permitted beyond the checkpoint include: Wheelchairs; scooters; crutches; canes; walkers; prosthetic devices; casts; support braces; support appliances; service animals; any and all diabetes-related medication, equipment, and supplies; orthopedic shoes; exterior medical devices; assistive/adaptive equipment; augmentation devices; ostomy supplies; medications and associated supplies; hearing aids; cochlear implants; tools for wheelchair disassembly/reassembly; personal supplemental oxygen; CPAP machines; respirators; CO2 personal oxygen concentrators; baby apnea monitors; Braille note takers; slate and stylus; tools for prosthetic devices; and any other disability-related equipment. Current restrictions prohibit liquids, gels, or lotions (except baby formula/milk and medications) through the security screening checkpoints and onboard the aircraft. This includes common items, such as, but not limited to: beverages, perfume/cologne, shampoo, shaving cream, suntan lotion, creams, toothpaste, hair gels, saline solution. Such items are recommended for transport in checked baggage. It is also recommended that those with medications only take the amount of medication essential to sustain them until arrival at their final destination. Additional medication can be placed in checked baggage or mailed to their final destination. This will help speed up the screening process and avoid additional delays. Travelers with disabilities, medical conditions, and the mature may want to consider the following: * Arriving at the airport well in advance, 2-3 hours prior to flight * Following all published rules on carry-on items and medications * Viewing TSA website tips for persons with disabilities and medical conditions and other TSA screening advisements located on TSAs website under "Our Travelers" * Bringing documentation on medications, devices, medical condition where possible. This is not a requirement and will not exempt a passenger from the screening process. * Packing medications in a clear bag separate from other carry-on items/bags * Exercising patience with the lines, delays, and stringent screening procedures For additional information on transportation security, the Transportation Security Administration Contact Center may be reached at: 1-866-289-9673 (Voice/Relay) tsa-contactcenter@... (Email) http://www.tsa.gov (Web) For concerns about potential rights violations, contact the TSA Office of Civil Rights at: 1-877-336-4872 (Voice) 1-800-877-8339 (TTY) tsa-contactcenter@... (Email) For information about overall air travel accessibility, contact the Air Carrier Access Act Hotline of the Department of Transportation at: 1-800-778-4838 (Voice) 1-866- 754-4368 (TTY) airconsumer@... http://airconsumer.ost.dot.gov (Web) - - - - - - - - - - Olegario D. Cantos VII, Esq. Associate Director for Domestic Policy The White House Washington, DC 20502 ocantos@...

i am very interested in this thread and others opinions. my son is autistic from a mercury (thermosil) MMR vaccine. Linda, i would be very interested to talk with you about your findings, and i could pass on some of my own. this is a highly charges subject, at least for me. i have tested high in mercury. are there any other opinions?