Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi Kaci, I'm . I'm the one who has 3 kids who can't get healthy for anything. Same for me. I'm usually on here telling what illness or injury someone has that particular day. Today, and for the last 2 weeks, we've all been suffering with bronchitis. Anyway, we have the hypermobile type, but nobody can tell me that we don't have some issues with other types of EDS. Just too many to list - but it ranges from my oldest daughter's 3 spontaneous pneumothoraxes, to all of us having joint pain. I now have my 2 daughters in home school because of all their health problems. My son may be doing it soon too, as he misses school on average probably a week a month. This is a great group. I am usually just complaining, but everyone is so supportive. And, the amount of info you'll get is sometimes overwhelming. I now have 1077 unread messages in my mailbox. But, I've been sick, so I haven't been reading much. Anyway, welcome. If I didn't have this support group, I'd probably be in the looney bin by now. Everyone here keeps me sane (well, that's debatable, but you know what I mean). Oh, and as far as I know, the only " test " is a skin biopsy they do if there is a suspicion of the vascular type. But, they didn't do it on us, even though my daughter keeps collapsing a lung. Truthfully, I don't think the drs really know much about it. I've become very cynical about the whole thing. All I know, is that me and my kids are always sick, always hurting, always subluxing a joint, always getting muscle spasms, and nobody can tell us why, except that we are hypermobile. I'm still in the " I can't believe all the health problems - there has got to be a reason " phase. Even though we got the type 3 dx, I'm still dubious about the whole thing. It's very frustrating. But, don't listen to me - everyone else here is positive and helpful. I just keep feeling sorry for myself and my kids. But, they let me, and have helped enormously. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 new here Hello. Well, I'm new to the EDS arena, The kids have chiari malfomration type I that was actually caused from their primary condition of craniosysnotosis (early skull fusion of the infant sutures)... any one here heard know of someone with EDS and cranio? Welcome Kaci! I know there are a couple of EDSers on the list who lurk, who have Chiari 1 malformations. My daughter, , age 15.5 and I have a Variant of EDS.... we have symptoms from several different types of EDS. Anyone have larygomalacia in your family? I am a speech language pathologist and am doing a survey on EDS and speech/language/voice/hearing/articulation/swallowing issues... If you'd like to participate, I can send you the survey off list as an attachment. Bonnie Heintskill Milwaukee Wisconsin area, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi Kaci -- Welcome to the group -- glad you have found us!! My name is Patti and I have VEDS. This is a great group with very special people in it. Welcome again!!!!! Take care, Patti new here Hello. To learn more about EDS, visit our website: http://members.rogers.com/ceda2/ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Welcome, Rhonda! I'm in the same boat. I was diagnosed with RA about a month ago (it hit me in the hands first -- I look like I have six big knuckles!) and some of my test results indicated Lupus, too. The main test ANA, though, has come back negative, so my doctor doesn't know if I definitely do have Lupus or not. I keep hoping answers will come. I hope you're not in pain. Have they given you any medication yet? Glad you're here; you'll love the group! -Anne > > Hi > > My name is Rhonda and I live in Western NY.I am 35 and I have been married to > my wonderful hubby for 17 yrs.I have 4 boys ages - 17,16,14 & 13. > > I have fibromyalgia but don't know if I have lupus yet.I had more blood tests > done last week when I came down with swollen glands and more mouth ulcers. > > Today though is not a good day.I went to have a bone scan done.My ruemmy > thinks I might have OA or RA because my knuckles in my left hand are changing > shape. > > Well I go and have the scan done and they see from the scan that there is > something on the back of my ribs on my right side.I had to go and have x-rays on > my ribs right after the scan so they could see in more detail what it is. > > But they couldn't tell me and it is making me worry all the more for not > knowing.All I know is that they were asking me if I had ever gotten hurt in my > ribs before.And of course I haven't so,I don't know what it could be. > > I don't think I will rest easy until I know. > > Thanks for listening... > > Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Hello All, I was lurking for a long time on this list, reading whatever I could read. I am expecting now anytime my little boy that will have right (I think) clubfood (found out during US). After internet search we decided to treat our son after Ponseti method and found a doctor in Boston New England Medical Center that will do it (Dr Ponseti recomended him). We are living in Maine and the baby will have MaineCare Insurance. My question is if somebody of you know if this will work out, I mean with this State Insurance. I know that they are covering only doctors in Maine but would they do it when the speciall doctor is not to find in Maine??? Katharine Sorry for my english but I am from germany living here only for 3 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hello Rodney, Welcome to our group. Here you will find a lot of information as well as some of the most caring people. This is a great support group. I cannot help you with the side effects from your type of chemo, but I am sure someone here can. They have made so much progress with the new chemo's and the outlook of survival is improving so much with it. Please post here often. Weather it be to ask for information or to vent. We are all here for you. I am adding you to my Prayer list. Ingrid > Hello. > > About a month ago, I was diagnosed with stage IV colon cancer with > liver mets and had my colon removed. Next week I get to start chemo + > Avastin (strangely looking forward to it). I just found this group on > Yahoo and look forward to reading other people's stories. > > Anyway know anything about the side effects of chemo 5FU + Leucovorin > and Avastin? I've been told that since I am relatively young (35 > years old) that it may not be so bad. I'll find out soon enough. > > I look forward to reading through the messages here. > > Sincerely, > Rodney Quote Link to comment Share on other sites More sharing options...
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