Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 beth, I have MS and you sound just like you have MS. I'd get a second opinion!! How was MS ruled out? I would really, really get a second opinion. Having lesions and not having MS then the docs should figure out why you have lesions. Lesions aren't normal whether you have MS or not! What ever you have going on needs to be found out for sure so you can get on meds so it won't progress. I've been through the ringer since '89 with several autoimmune diseases and other "little" things...lol So I couldn't just sit back and take what those docs are telling you. Warm weather does me in because of MS. Maybe then you don't have MS if heat doesn't effect you. But I would still get another opinion on all of it. Good luck and welcome!!! x0x0x0 Shirleymarybethsundermann wrote: Wow!! Thank you all for such a warm welcome. You all seem like a pretty tight knit group and it was really great how you welcomed me so easily! I am 37, and was diagnosed with Indeterminate Autoimmune Disease at UPenn a few months ago. They thought it might be MS because there are a few lesions on my brain, but that has been ruled out. Some of my symptoms are- Raynaud's, sun rashes, chronic acute bursitis in shoulder/hips, mouth ulcers,migraines joint swelling/pain in my hands and when I have attacks/episodes fatigue where I can't lift my arms or walk for more than a few seconds. Of course I also have fibromyalgia-a diagnosis in which I have little faith. I think it has been the autoimmune disease this entire time and not fibro. The doctor believes it may end up being Lupus, but it has not shown in my blood yet. She said it could take up to 10 years to show up in my blood.I get steroid shots in my hips/shoulders every 3 months, I take celebrex, imitrex, zoloft, darvocet, and loads of vitamins- especially B. I am trying to handle the attacks myself for a while by lowering stress (ha! ha!), exercising and staying warm. I have 2 little boys ages 5 and 3 1/2. I found great relief being on vacation in Florida for 2 weeks. Must be the combination of low stress, warm weather and walking/swimming everyday. I read that some of you live in the south- I live in NJ. thinking about relocating- what are your thoughts about the warm weather? Does it help you?Thats a brief summary. Thanks for listening! beth Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 If you're going to relocate, this would be the best time...before the boys start school. I personally love to visit the south, but it would kill me to live there....the summers up here are hot and humid enough for me, LOL. Plus I love the snow, even if the cold weather makes me hurt. My energy level is actually lower in the hot humid weather than in the cold. Kathy Thank you!!!! Wow!! Thank you all for such a warm welcome. You all seem like a pretty tight knit group and it was really great how you welcomed me so easily! I am 37, and was diagnosed with Indeterminate Autoimmune Disease at UPenn a few months ago. They thought it might be MS because there are a few lesions on my brain, but that has been ruled out. Some of my symptoms are- Raynaud's, sun rashes, chronic acute bursitis in shoulder/hips, mouth ulcers,migraines joint swelling/pain in my hands and when I have attacks/episodes fatigue where I can't lift my arms or walk for more than a few seconds. Of course I also have fibromyalgia-a diagnosis in which I have little faith. I think it has been the autoimmune disease this entire time and not fibro. The doctor believes it may end up being Lupus, but it has not shown in my blood yet. She said it could take up to 10 years to show up in my blood.I get steroid shots in my hips/shoulders every 3 months, I take celebrex, imitrex, zoloft, darvocet, and loads of vitamins- especially B. I am trying to handle the attacks myself for a while by lowering stress (ha! ha!), exercising and staying warm. I have 2 little boys ages 5 and 3 1/2. I found great relief being on vacation in Florida for 2 weeks. Must be the combination of low stress, warm weather and walking/swimming everyday. I read that some of you live in the south- I live in NJ. thinking about relocating- what are your thoughts about the warm weather? Does it help you?Thats a brief summary. Thanks for listening! beth Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 Maybe there just aren't enough lesions to qualify, yet? Kathy Re: Thank you!!!! beth, I have MS and you sound just like you have MS. I'd get a second opinion!! How was MS ruled out? I would really, really get a second opinion. Having lesions and not having MS then the docs should figure out why you have lesions. Lesions aren't normal whether you have MS or not! What ever you have going on needs to be found out for sure so you can get on meds so it won't progress. I've been through the ringer since '89 with several autoimmune diseases and other "little" things...lol So I couldn't just sit back and take what those docs are telling you. Warm weather does me in because of MS. Maybe then you don't have MS if heat doesn't effect you. But I would still get another opinion on all of it. Good luck and welcome!!! x0x0x0 Shirleymarybethsundermann wrote: Wow!! Thank you all for such a warm welcome. You all seem like a pretty tight knit group and it was really great how you welcomed me so easily! I am 37, and was diagnosed with Indeterminate Autoimmune Disease at UPenn a few months ago. They thought it might be MS because there are a few lesions on my brain, but that has been ruled out. Some of my symptoms are- Raynaud's, sun rashes, chronic acute bursitis in shoulder/hips, mouth ulcers,migraines joint swelling/pain in my hands and when I have attacks/episodes fatigue where I can't lift my arms or walk for more than a few seconds. Of course I also have fibromyalgia-a diagnosis in which I have little faith. I think it has been the autoimmune disease this entire time and not fibro. The doctor believes it may end up being Lupus, but it has not shown in my blood yet. She said it could take up to 10 years to show up in my blood.I get steroid shots in my hips/shoulders every 3 months, I take celebrex, imitrex, zoloft, darvocet, and loads of vitamins- especially B. I am trying to handle the attacks myself for a while by lowering stress (ha! ha!), exercising and staying warm. I have 2 little boys ages 5 and 3 1/2. I found great relief being on vacation in Florida for 2 weeks. Must be the combination of low stress, warm weather and walking/swimming everyday. I read that some of you live in the south- I live in NJ. thinking about relocating- what are your thoughts about the warm weather? Does it help you?Thats a brief summary. Thanks for listening! beth Please visit our website at:http://ACES_Autoimmune.tripod.com Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 Belated Welcome beth! I wish you had told us when you were in Florida! Dawn and Jane live in FL and I live in Southwest Georgia! I'm the "ringleader" here and I'm 38 years old with multiple autoimmune diagnosis, the most popular of which are the Rheumatoid Arthritis and Lupus. There are others. They run in packs. I was interested in your symptoms and my first thought was lupus. I see you're taking celebrex which is an NSAID. Are you, or have you tried, taking any DMARD's such as enbrel, remicade, methotrexate or humira? OK Some are actually anti-TNF biologic agents but still DMARDs. I know I left some out but these are the "new breeds" and seem to do wonders for our symptoms. Also, don't scoff at the fibromyalgia diagnosis. You could have that mixed in with everything else (several here do) and that creates a new bag of troubles since you don't know what's causing which pain and fixing it becomes more difficult. As for the warm weather, some of us are extolling the virtues of hot tubs and they are marvelous! Thinking about how I feel in the cold months (OK cold here is about 50 degrees!) versus the summer months, I definitely do better in the summer. The cold makes my joints seems to "harden" and they feel stiffer than usual. Summer is bad enough but I get kinda moody (you guys shut up, I can call it "moody" if I want to!) in the cold weather if I have to go outside for long periods at a time! Welcome. I think you'll like it here but you have to jump in and get your feet wet or you'll never get a word in edgewise! SOME of the girls here talk a lot! LOL Be sure to check out our website that works so hard on http://ACES_Autoimmune.tripod.com and let me know if I can do anything to help you! My private email is christyd8@... if you should ever need it. Hugs, Christy Thank you!!!! Wow!! Thank you all for such a warm welcome. You all seem like a pretty tight knit group and it was really great how you welcomed me so easily! I am 37, and was diagnosed with Indeterminate Autoimmune Disease at UPenn a few months ago. They thought it might be MS because there are a few lesions on my brain, but that has been ruled out. Some of my symptoms are- Raynaud's, sun rashes, chronic acute bursitis in shoulder/hips, mouth ulcers,migraines joint swelling/pain in my hands and when I have attacks/episodes fatigue where I can't lift my arms or walk for more than a few seconds. Of course I also have fibromyalgia-a diagnosis in which I have little faith. I think it has been the autoimmune disease this entire time and not fibro. The doctor believes it may end up being Lupus, but it has not shown in my blood yet. She said it could take up to 10 years to show up in my blood.I get steroid shots in my hips/shoulders every 3 months, I take celebrex, imitrex, zoloft, darvocet, and loads of vitamins- especially B. I am trying to handle the attacks myself for a while by lowering stress (ha! ha!), exercising and staying warm. I have 2 little boys ages 5 and 3 1/2. I found great relief being on vacation in Florida for 2 weeks. Must be the combination of low stress, warm weather and walking/swimming everyday. I read that some of you live in the south- I live in NJ. thinking about relocating- what are your thoughts about the warm weather? Does it help you?Thats a brief summary. Thanks for listening! beth Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
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