Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 >From: parent@... >Reply-onelist >onelist >Subject: Hi, I'm new >Date: 28 Jun 1999 03:23:07 -0000 > >From: parent@... > >Hello, >I just joined the list and have been eagerly working >my way through the archives.I have rheumatoid arthritis >and MS. My oldest son (age15)has Aspergers, epilepsy, ADHD and >learning disabilities. My second son (age14) has >Down syndrome and a severe heat intolerance. My >daughter is now ill with what looks like chronic >fatigue and/or orthostatic intolerance. At the same > time she became ill, she developed a severe >allergy to milk.I've searched for research on possible >connections to all this and I'm looking forward to > sharing and learning with others on the list. >Marie hello Marie, I am Josiane. I'm rather new on the list myself, so I don't feel I'm the right person to say " welcome " to you ! I just wanted to tell you that I really found some useful information on the list and I do hope you will find it too. I wish you a lot of strength and courage in all the problems you are facing. We are parents of a three year old girl, mentally disabled and autistic. The future doesn't look bright for her, but we will never stop fighting. Greetings, Josiane. > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 Can somebody tell me how to access the archives. I only was able to look at yesterdays mailing. I am NEW here. Thanks nancy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 Hi, If you have not done so already, a good place to look re: is at www.nids.net www.neuroimmunedr.com welcome to the list. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Hi Mindy, I'm new here myself, so there are others who will no doubt give you lots of good advice. I must say though, that your email resonated with me because you sound like I felt, and not too long ago! While I haven't experienced a disc herniation or irritable bowel, your pain systems sound so very familiar... > I am a 34 year old mother and wife with a host of symptoms that have > yet to be diagnosed. I am going to the doctor the 14 for a complete > physical. My pain started a few years ago with a herniated disc in my > back, I have bad dexterity in my fingers, my ankles give out all the > time, I have bladder spasms and irritable bowl...but this past summer > my right knee started to hurt...no apparent reason, this has > progressed to both ankles aching, both knees aching, my hips aching > my elbows, weekness in my shoulders...I think it is arthritis...I > just can't get over how this happened! I am sure everyone says that. My symptoms progressed over a period of two years. Started in my hands, moved to my feet, then my knees, hips and finally my shoulders. I was beginning to think I was crazy. I would go to doctors' appointments, she would be focused on mammograms, yearly physicals, my thyroid, my weight, keeping my liver enzymes within normal parameters (I was taking Vioxx), and every time I talked about being in pain, I was mostly dismissed and advised, if I would just lose weight I would feel much better. I had to beg for a referral, and then *I picked* the physician, after careful consideration from a nurse friend whom I trust. > Any how I'm sorry for whining, I am just frustrated. I have had > multiple bouts of chostocondritis...imflamation of the rib > cartilage...and surrounding areas, sitting here typing my wrist and > shoulders are ready to just drop off it feels like. When the pain moved into my shoulders, the best description I could come up with is that they both felt like they were broken. I couldn't sleep, because I am a side sleeper. Couldn't bear to put pressure on either shoulder, and when I rolled over, which was constantly, looking for a comfortable position, there was always pain. You're entitled to whine. It is no fun being in pain. It is my physician's practice, on the anniversary of your annual visits, to do a reevaluation of your medical history/symptoms. I checked off the box that asked if I suffered from insomnia. At the time, I felt so desperate for a good night's sleep, I thought I might soon lose my mind, if I didn't get any. I remember my doctor asking me why I couldn't sleep, I told her it was because I was always in pain. I remember her asking me where, I told her my feet, my knees, my legs, my hips, my hands, my wrists, my arms, my elbows and my shoulders. To her credit, she was quite shocked. (To my credit, this was not the first time I had complained of pain, I just kept getting brushed off.) Although the rheumatolgist referral was still some months down the road, she did prescribe some Ativan, which did help me sleep. And later, LorTab, which did give some pain relief, but I *hated* the way it made me feel. And certainly wouldn't have dared try to work and take it at the same time. So it was of limited value to me, only daring to use it on the weekends, before I went to bed. Since being diagnosed with RA and started treatment with prednisone and methotrexate, the difference is startling! Within 4 hours of taking my first dose of prednisone, I felt like a new person. So, I guess what I'm saying is, keep searching for answers; bring a trusted friend or family member to your appointments if you can, they will advocate for you when you're too emotionally upset to ask the right questions. If you don't think you are getting answers that make sense, ask for a referral or go somewhere else. There is no need to suffer needlessly, as probably everyone here will agree, and if you don't find the right doctor at first who is really willing to work with you, keep looking, you'll find one. > My question is , does this sound like arthritis? It just keeps > progressing and I don't know how to deal with it. > Any advice, information or input would be greatly appreciated. > Thanks Mindy > P.s. I am having a lot of popping and cracking from all of my > joints...does this mean anything? My joints crack all the time. My doctor tells me her joints crack. I have arthritis, she doesn't, so who knows. Good luck and stay in touch! Suzanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Suzanne, I read the other post before this one and did you see what I wrote??? shocking! I had no idea...it does sound the same...only it is my hip that I can't lay on insted of my shoulder....Oh my goodness!!!! I too have been afraid to say anything and it is so hard, and I have heard how hard it has been from other people to get the Dr's to listen, I guess I am a little scared. I'm sorry you are in such pain, but I am so glad you are here. I just can't get over this...wild How long did it take them to diagnose you? And you are having more good days than before?I have never had a physical, I suppose I always just went when I was ill, which I still try not to do..haha..I can't get out of this one though, it is affecting more people than just myself. I had some Vioxx left over from my last bout of Chostcondritis, it never helped with that and it doesn't seem to help with this, it makes me a little sick to my stomach too. Gee, could I complain any more....I know it could be worse...but I also know it can be better, I hope. Ok..another question, do you hurt worse when you have to walk more,like grocery shopping and errands? I had to today...another new symptom, the arches of my feet even started to hurt and I was even wearing my tennis shoes! Ok...enough complaining out of me for now Thank you!!!!! : ) Mindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 hey mindy. i know what you mean with the feet. mine are finally getting better after tarsal tunnel surgeries this last year. but i could hardly keep my shoes on they would swell so bad. i am still having trouble with scar tissue. so i am still going to physical therapy since last summer. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 hi susan, i too know how you feel. i'm kathy 42 inflamatory spondyloarthropy, fibromyalgia. i've had carpal tunnel and tarsal tunnel surgeries bilaterally. i run a low grade fever almost every afternoon. i have fatigue and flu-like symptoms. after i have a couple good days in a row. i think that i should return to work, or volunteer, something to get out of here. then i'll come back to reality. welcome. we all understand how it is. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Hi ...welcome to this wonderful family, though I am sorry for what brought you here. I understand the fatigue...sometimes it's double-dosed, not knowing where the RA ends and the Fibro begins. This has been a warm and safe place to share my ups & downs. I hope it is for you, too. With Hope... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Hi , Welcome to our group. I'm pretty new too, but have found some good information and comfort here. Today was a good day for me, but mostly because I work one day a week at church, and Rev. Fred will not let me be gloomy! Hope tomorrow and tomorrow are better for you, Judi in IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Hi , Welcome to the group!!! I don't have RA, I have SLE. Different disease same fatigue, I know how you feel. Huggs Lena > Hi everyone, > > My name is . I have RA, fibro and all the fatigue that goes with > it. Some days I feel good and others like today...feel like my world > is caving in. Can't concentrate and at the same time try to fight it. > I feel like I " should " get better. Denial I guess....hmmm. > Well, just feeling a bit sad today, really needed to vent to someone > who understands this aweful disease. > > Thanks for listening, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Hi . Welcome to our group. I have RA & FM too and know how you feel. Fatigue is really rotten. Sorry it¹s a sad day and hope tomorrow is better. a > Hi everyone, > > My name is . I have RA, fibro and all the fatigue that goes with > it. Some days I feel good and others like today...feel like my world > is caving in. Can't concentrate and at the same time try to fight it. > I feel like I " should " get better. Denial I guess....hmmm. > Well, just feeling a bit sad today, really needed to vent to someone > who understands this aweful disease. > > Thanks for listening, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Hi , Welcome. I am a 39 year old male with Still's Disease, RA, SI Joint Dysfunction and a few more minor diseases. I am sorry you are down but know that are a lot of knowledgeable and compassionate people here that can emphatize and offer support and encouragement. Hope you are feeling a bit better. Take care. Al in IL > Hi everyone, > > My name is . I have RA, fibro and all the fatigue that goes with > it. Some days I feel good and others like today...feel like my world > is caving in. Can't concentrate and at the same time try to fight it. > I feel like I " should " get better. Denial I guess....hmmm. > Well, just feeling a bit sad today, really needed to vent to someone > who understands this aweful disease. > > Thanks for listening, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Welcome to the group, ! Glad to hear that you are feeling a bit better today. Hope that you like it here, and I'm looking forward to learning more about you. [ ] Hi, I'm new > Hi everyone, > > My name is . I have RA, fibro and all the fatigue that goes with > it. Some days I feel good and others like today...feel like my world > is caving in. Can't concentrate and at the same time try to fight it. > I feel like I " should " get better. Denial I guess....hmmm. > Well, just feeling a bit sad today, really needed to vent to someone > who understands this aweful disease. > > Thanks for listening, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Hi and welcome: You have definately come to the right place to find people who truly understand what you are going through! I am 48 and have RA and Raynaud's. I understand completely about the fatigue problem - sometimes it seems worse than the pain - tired of being tired. Sorry that you are feeling so blue - it's hard to keep a positive attitude sometimes when you are feeling so physically yucky. Hope you feel better soon. Feel free to vent anytime! Kathe in CA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Yesterday, at 4years 3 months my daughter was FINALLY diagnosed with BPES. It has been killing me for four years knowing that there was something else besides the ptosis. I am so relieved to know that I have not been crazy for the past 4 years. There is so much I want to say, I hope I can keep you all with me. My daughter's ptosis is not considered severe so we are still waiting for the surgery. Her left eye is more severe than the right. There have been two different sugeries suggested --the sling or a " tack " in the levetator muscle. We should be getting referred to the pediatric ptosis surgeon in January. We'll see... A small bit of history. The ptosis was noticed by myself immediatly. There have also been several minor dismorphic features that have been noticed by myself or by my mom over the years. It was not until the Oro-facial surgeon recommended a geneticist that my ped. decided to refer. Well, I am also sick and tired of people and family telling me that she is tired all of the time! My daughter is beautiful and has a smile that lights up any room. By the way, my name is Kerry and my daughter is AnaLia. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Analia WElcome to the group and to everyone else thats new. I hav blep and my son has it. He is 9 months. My sister, neice and dad also have it. I know how you feel when you get sick and tired of people saying how tired they look. "Oh he's half asleep" is the most common comment, I just ignore them, politely smile and walk on. Sam has the most warming smile that would melt any heart as well. Sam has an astigmatism and they are already talking about glasses as he is long sighted. It looks like he will have surgery at 4 - just before going to school, which was the same as my neice. Good luck at the surgeon with Kerry. mamajoex2 <mamajoex2@...> wrote: Yesterday, at 4years 3 months my daughter was FINALLY diagnosed with BPES. It has been killing me for four years knowing that there was something else besides the ptosis. I am so relieved to know that I have not been crazy for the past 4 years. There is so much I want to say, I hope I can keep you all with me.My daughter's ptosis is not considered severe so we are still waiting for the surgery. Her left eye is more severe than the right.There have been two different sugeries suggested --the sling or a "tack" in the levetator muscle. We should be getting referred to the pediatric ptosis surgeon in January. We'll see...A small bit of history. The ptosis was noticed by myself immediatly. There have also been several minor dismorphic features that have been noticed by myself or by my mom over the years. It was not until the Oro-facial surgeon recommended a geneticist that my ped. decided to refer. Well, I am also sick and tired of people and family telling me that she is tired all of the time! My daughter is beautiful and has a smile that lights up any room. By the way, my name is Kerry and my daughter is AnaLia. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Just a thought on how to view all this. Whenever hormones are in play INFECTIONS thrive-Children get increased acne when increasing levels of growth hormone are present. Females also show increased acne activity during monthly cycles . So I'm comfortable that if I were a bacteria I'd be at home in a gland that produces what I need (hormones). tony > > > > Welcome, and I hope you will find help here. Most of us come from a > > history of being diagnosed with chronic fatigue syndrome only to find > > that we have several infections going on causing the symptoms. A lot > > of us are hypothyroid including myself. Are you well on thyroid > > treatments? > > > > a Carnes > > > > > > > > > > Hello everyone, > > > > > > I recently signed up and not sure what to post, but the beginning is > > > the best place to start I suppose. So basically, I was diagnosed > > > hashimoto's hypothyroid in 1997, had my ups and downs with it. Now am > > > always just looking for more information how to get a handle over it. > > > Anyway, thats all I can think of now. I read a few posts here and it > > > sounds great. Inflammation causes so many problems, diseases, even > > > headaches. > > > > > > ~ Priitaa > > > Hypothyroid Vegetarians: > > > HypothyroidVegetarians > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hi, I still have some infection tho I keep it under control with herbs. I am a vegetarian and do not eat any meat fish poultry or eggs. (yes to dairy.) Vegans get mad at me cuz there is this underlying disagreement that vegans are the only 'real' vegetarians or the 'best' vegetarians.. I was acutally told that once by a guy working in a health food store I was shopping at. Anyway theree are many types of vegetarians. Fruitarians (ha, too sweet for me, tho must be nice for those who can), sproutarians (I'm more attracted to that yet know I could never do it), and others. I am a lacto-vegetarian. As far as the misunderstanding the vegetarians do not get enough protein, Urd dhal (a type of bean soup) is as high in protein as meat. The thing with hashimotos and me (sounds like a book or movie lol)... is that I am doing " ok " and even have quite a bit of natural healing knowledge on it... but I am a bit alone in it. My husband tries but he doesn't get it, and goes out and buys all the wrong foods for example. Anyhow, thats why I am looking for other veggie hypos. Tho yes, we can all talk, all share, all get along, and learn from one another. Thank you. ~ Priitaa Hypothyroid Vegetarians: HypothyroidVegetarians > > > > > > Welcome, and I hope you will find help here. Most of us come from > a > > > history of being diagnosed with chronic fatigue syndrome only to > find > > > that we have several infections going on causing the symptoms. A > lot > > > of us are hypothyroid including myself. Are you well on thyroid > > > treatments? > > > > > > a Carnes > > > > > > > > > > > > > > Hello everyone, > > > > > > > > I recently signed up and not sure what to post, but the > beginning is > > > > the best place to start I suppose. So basically, I was > diagnosed > > > > hashimoto's hypothyroid in 1997, had my ups and downs with it. > Now am > > > > always just looking for more information how to get a handle > over it. > > > > Anyway, thats all I can think of now. I read a few posts here > and it > > > > sounds great. Inflammation causes so many problems, diseases, > even > > > > headaches. > > > > > > > > ~ Priitaa > > > > Hypothyroid Vegetarians: > > > > HypothyroidVegetarians > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2007 Report Share Posted June 24, 2007 And to think I went on a whole 'protein' rampage. lol Oh, B12 is specific to vegans, yet, not to lacto-vegetarians, not at all. My daughter once decided to go vegan in her teen years and I had to laugh at myself. I probably sounded to her, as my mother did to me, when I decided to go vegetarian. (Don't think there was vegan back then, or if there was, we hadn't heard of it, so even tho I went lacto-veggie, it worried her.) So here I was trying to bite my tongue (sometimes succesfully, sometimes, not ha) about " where will you get your calcium from, what to speak of B12?!!! " A little it was rought, but mostly I waited it out, and... well she just likes ice cream too much. ha I am using golden seal to control sinusitis, and just today was able to order herbs specific to thryoid. I was worried about that cuz ... no money. But today myself said 'go ahead and buy them,' so I did, before he changed his mind. Anyway, I know a lot about thyrid but I do believe, or at least have found for myself, without support, its hard to do alone. ~ Priitaa Hypothyroid Vegetarians: HypothyroidVegetarians > > > > > > > > > > Welcome, and I hope you will find help here. Most of us come > from > > > a > > > > > history of being diagnosed with chronic fatigue syndrome only > to > > > find > > > > > that we have several infections going on causing the > symptoms. A > > > lot > > > > > of us are hypothyroid including myself. Are you well on > thyroid > > > > > treatments? > > > > > > > > > > a Carnes > > > > > > > > > > > > > > > > > > > > > > Hello everyone, > > > > > > > > > > > > I recently signed up and not sure what to post, but the > > > beginning is > > > > > > the best place to start I suppose. So basically, I was > > > diagnosed > > > > > > hashimoto's hypothyroid in 1997, had my ups and downs with > it. > > > Now am > > > > > > always just looking for more information how to get a > handle > > > over it. > > > > > > Anyway, thats all I can think of now. I read a few posts > here > > > and it > > > > > > sounds great. Inflammation causes so many problems, > diseases, > > > even > > > > > > headaches. > > > > > > > > > > > > ~ Priitaa > > > > > > Hypothyroid Vegetarians: > > > > > > HypothyroidVegetarians > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Thank you. After I was diagnosed, it was a long road to where I am now. At first, knowing nothing about my disease, I surrendered to whatever the doctors told me. But when I wasn't getting better enough, I started to do a lot of net searching. At that time, there was'nt much out there! I was searching and searching. Then one day someone must have subscribed me cuz I never did, to a thyroid newsletter. It still had a way to go, but it opened the door to new possibilities! What a relief. Sicne than I have looked into TCM (chinese) and Ayurvedic, and anything really that works. Oh, I've learned a lot by now, but I must confess, my husband, tho well meaning, is not the best support system. He tries, but forgets important things that I can or can't eat for example (certian foods block the uptake of thyroid hormone, other foods are just downright fattening like olive oil which he kept pouring over my rice for 'health' purposes. After I gained my recnetly lost weight back, he finall believed it is caloric. (Hypothyrodisim makes it very hard to loose weight or even maintain a good weight.) Anyhow, thats over. ha And what I've had to accept is that I do not have the strength to go it alone. I am really a strong person, but when sick and met with (unintentional) obstacles, I just need a support system. Well, I was going to keep this post short and look what I did. haha Ok, I better go now. Thanks for loaning an ear. ~ Priitaa Hypothyroid Vegetarians: HypothyroidVegetarians > > > > > > Welcome, and I hope you will find help here. Most > > of us come from a > > > history of being diagnosed with chronic fatigue > > syndrome only to find > > > that we have several infections going on causing > > the symptoms. A lot > > > of us are hypothyroid including myself. Are you > > well on thyroid > > > treatments? > > > > > > a Carnes > > > > > > > > > > > > > > Hello everyone, > > > > > > > > I recently signed up and not sure what to post, > > but the beginning is > > > > the best place to start I suppose. So > > basically, I was diagnosed > > > > hashimoto's hypothyroid in 1997, had my ups and > > downs with it. Now am > > > > always just looking for more information how to > > get a handle over it. > > > > Anyway, thats all I can think of now. I read a > > few posts here and it > > > > sounds great. Inflammation causes so many > > problems, diseases, even > > > > headaches. > > > > > > > > ~ Priitaa > > > > Hypothyroid Vegetarians: > > > > > > > HypothyroidVegetarians > > > > > > > > > > > > > > > > > > ________________________________________________________________________________\ ____ > 8:00? 8:25? 8:40? Find a flick in no time > with the Search movie showtime shortcut. > http://tools.search./shortcuts/#news > Quote Link to comment Share on other sites More sharing options...
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