Booknrd Posted June 19, 2016 Share Posted June 19, 2016 I'm a 20yr old woman, and I've been sick for about four years now. It started with random pain in my legs, adolescent scoliosis, constant stomach pain and nausea, coupled with a weird rash all over my neck and chest. I got medicine for heartburn and the pain in my stomach lessened for a while. I then developed serious muscle weakness and numbness in my arms and legs, to the point where I could barely drive a car. Then came rapid weight loss. Over three months, I went from 125lbs to 105lbs, despite eating regularly. The rash came back with a vengeance too. I was diagnosed with an auto-immune disorder, leading to several cases of bronchitis within that time span. We went to several doctors, who ruled out MS, muscular dystrophy, Crohn's disease, IBD/IBS, several cancer types, and hormone imbalance. Because of the weight loss and lack of appetite (happens when you hurt every time you eat), the doctors decided to focus on my weight and not on a diagnosis. I've been on several medications that target the stomach, in an effort to gain weight back. However, it's not helping. And now, in addition to the above symptoms, I'm getting randomly appearing bruises on my arms and legs, which stay for several weeks, and I've broken my toes by literally jumping up and down, dislocated my hip while lifting boxes, and fractured an arm by bumping into a wall. The doctors still want to focus on my weight, but I'm getting concerned about other possibilities. Does anybody have an idea of what might be wrong with me? Quote Link to comment Share on other sites More sharing options...
Spryte Posted June 19, 2016 Share Posted June 19, 2016 Rashes, random bruises, weight loss, weakness, numbness, ... Where do you live?at the risk of sounding Crazy Tick Lady, because I've already suggested this once on the boards today - I think you need an LLMD to rule out tick borne diseases. Lyme Literate Doc. Go to Lymnet.org and post in Seeking A Doc for a list. Watch Under Our Skin, on Netflix. And feel free to pm. A lot of your symptoms sound familiar to me. 2 Quote Link to comment Share on other sites More sharing options...
emmaluv+2more Posted June 19, 2016 Share Posted June 19, 2016 Celiac 2 Quote Link to comment Share on other sites More sharing options...
JFSinIL Posted June 19, 2016 Share Posted June 19, 2016 (edited) Do you homeschool? Were you homeschooled? Why are you asking us this - true, we are wise old souls here ;-) but are there not more appropriate places on-line to ask about medical issues? Yes, other folks post medical questions - but they are usually long-time boardies, not folks asking for medical advice in their very first post. I apologize for being so suspicious.... Edited June 19, 2016 by JFSinIL 4 Quote Link to comment Share on other sites More sharing options...
sassenach Posted June 19, 2016 Share Posted June 19, 2016 Do you homeschool? Were you homeschooled? Why are you asking us this - true, we are wise old souls here ;-) but are there not more appropriate places on-line to ask about medical issues? Yes, other folks post medical questions - but they are usually long-time boardies, not folks asking for medical advice in their very first post. I apologize for being so suspicious.... If somebody finds this forum randomly (like by searching symptoms and finding similar posts), I don't think there is anything that identifies this as a homeschool board. No one outside of homeschooling would know that "The Well-Trained Mind" is at all related to homeschooling. So, that's probably why we sometimes get random posts. I can relate to desperately searching the internet for medical answers, so I have much sympathy. And we are a pretty smart and seasoned bunch. :laugh: 4 Quote Link to comment Share on other sites More sharing options...
Booknrd Posted June 19, 2016 Author Share Posted June 19, 2016 Do you homeschool? Were you homeschooled? Why are you asking us this - true, we are wise old souls here ;-) but are there not more appropriate places on-line to ask about medical issues? Yes, other folks post medical questions - but they are usually long-time boardies, not folks asking for medical advice in their very first post. I apologize for being so suspicious.... I was homeschooled :) I remembered that this particular site/forum existed when I was chatting with some of my friends about our experiences as homeschoolers and now as some of us are starting to homeschool our own munchkins. And yes, there are more appropriate places to ask. However, I've been looking online and in books for months with no results worth mentioning. As I said, I've been to a lot of doctors, but they don't communicate with each other and all they have are lists of things they're pretty sure it isn't. At this point, I'm pretty much grasping at straws. So I figure if I post to a bunch of different forums, I'll hopefully find something constructive :D 5 Quote Link to comment Share on other sites More sharing options...
Booknrd Posted June 19, 2016 Author Share Posted June 19, 2016 Rashes, random bruises, weight loss, weakness, numbness, ... Where do you live?at the risk of sounding Crazy Tick Lady, because I've already suggested this once on the boards today - I think you need an LLMD to rule out tick borne diseases. Lyme Literate Doc. Go to Lymnet.org and post in Seeking A Doc for a list. Watch Under Our Skin, on Netflix. And feel free to pm. A lot of your symptoms sound familiar to me. Lol no problem! Unfortunately, that was one of the first things we tested for. Because ticks are a big problem where I live, our family practitioner always does tests for those first. Everything came back clean, and as I've gotten sicker, I've spent a lot less time outside, so it's very unlikely for that to be the case now. Quote Link to comment Share on other sites More sharing options...
JFSinIL Posted June 19, 2016 Share Posted June 19, 2016 Thanks for clarifying! Now hope one of the wise souls here can come up with something you haven't already thought of. Not to be gross, but have you had a full colonoscopy? Quote Link to comment Share on other sites More sharing options...
TranquilMind Posted June 19, 2016 Share Posted June 19, 2016 (edited) I'm a 20yr old woman, and I've been sick for about four years now. It started with random pain in my legs, adolescent scoliosis, constant stomach pain and nausea, coupled with a weird rash all over my neck and chest. I got medicine for heartburn and the pain in my stomach lessened for a while. I then developed serious muscle weakness and numbness in my arms and legs, to the point where I could barely drive a car. Then came rapid weight loss. Over three months, I went from 125lbs to 105lbs, despite eating regularly. The rash came back with a vengeance too. I was diagnosed with an auto-immune disorder, leading to several cases of bronchitis within that time span. We went to several doctors, who ruled out MS, muscular dystrophy, Crohn's disease, IBD/IBS, several cancer types, and hormone imbalance. Because of the weight loss and lack of appetite (happens when you hurt every time you eat), the doctors decided to focus on my weight and not on a diagnosis. I've been on several medications that target the stomach, in an effort to gain weight back. However, it's not helping. And now, in addition to the above symptoms, I'm getting randomly appearing bruises on my arms and legs, which stay for several weeks, and I've broken my toes by literally jumping up and down, dislocated my hip while lifting boxes, and fractured an arm by bumping into a wall. The doctors still want to focus on my weight, but I'm getting concerned about other possibilities. Does anybody have an idea of what might be wrong with me? Goodness, I am so sorry. That's awful. Have you done a western blot for Lyme? The weight loss and some of the other things you mention make me wonder. Maybe it isn't that, but I would sure want to rule it out. Have you done food and environmental testing (all of these can be easy blood tests - they do not have to stick you hundreds of times with an allergen in an office)? You can do whatever testing you want at some labs. We have a chain here. You just walk in and order your tests, they do them, and send you the results directly. You need to get the testing done more than once, if awhile has passed. The Elisa alone is not sufficient. ETA: Just read that someone else recommended Lyme. You can get the western blots yourself, without a LLMD, but if you want the gold standard Western Blot, you want the Igenix, and apparently only the LLMD's do those. They have to have a special form even to order it. Go to some alternative doctor/Naturopath if you want to figure out what is going on. Allopathic doctors aren't much use there, I have found. They are great for the removal of something that doesn't belong there, or antibiotics, but it sounds as if you have lots of things going on, and perhaps even some new ones due to all the medications you are now on. Your weight is a result of the problem, not the problem itself. Edited June 19, 2016 by TranquilMind 1 Quote Link to comment Share on other sites More sharing options...
TranquilMind Posted June 19, 2016 Share Posted June 19, 2016 (edited) Double post. Sorry. Edited June 19, 2016 by TranquilMind Quote Link to comment Share on other sites More sharing options...
countrygal Posted June 19, 2016 Share Posted June 19, 2016 Have you been tested for Celiac? There are a host of symptoms that can come with it. Malnourishment from malabsorption can cause fragile bones, bruising, wt. loss... If you have tested negative you may want to try eating gluten free for a while to see if your symptoms improve (may take time though.) Hopefully you get some answers soon! 1 Quote Link to comment Share on other sites More sharing options...
countrygal Posted June 19, 2016 Share Posted June 19, 2016 Forgot to add - dermatitis herpetiformis is a rash associated with Celiac. Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted June 19, 2016 Share Posted June 19, 2016 (edited) I would also ask the doctors to do tests for lymphoma, especially considering the weight loss and skin rash. Do you ever have low grade fevers, itchy skin, sweats, or enlarged lymph nodes? Edited June 20, 2016 by trulycrabby Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted June 20, 2016 Share Posted June 20, 2016 I third the suggestion to get tested for celiac disease. After testing, I suggest a gluten-free (and maybe dairy-free, too) trial, regardless of the test results. 1 Quote Link to comment Share on other sites More sharing options...
displace Posted June 20, 2016 Share Posted June 20, 2016 Rashes, random bruises, weight loss, weakness, numbness, ... Where do you live?at the risk of sounding Crazy Tick Lady, because I've already suggested this once on the boards today - I think you need an LLMD to rule out tick borne diseases. Lyme Literate Doc. Go to Lymnet.org and post in Seeking A Doc for a list. Watch Under Our Skin, on Netflix. And feel free to pm. A lot of your symptoms sound familiar to me. I was thinking Lyme too. 1 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted June 20, 2016 Share Posted June 20, 2016 I second the suggestion of a naturopathic doctor. I would look for one that uses allopathic lab tests. 1 Quote Link to comment Share on other sites More sharing options...
emmaluv+2more Posted June 20, 2016 Share Posted June 20, 2016 If you are reading, could you tell us which autoimmune disorder you have already been diagnosed with? They often go hand in hand and could make an argument for Celiac even stronger. Quote Link to comment Share on other sites More sharing options...
muttmomma Posted June 20, 2016 Share Posted June 20, 2016 I agree with the celiac thoughts. Especially with stomach issues. Go gluten free and casein free for a year at least. It takes a lot of time for that to heal. Look for it everywhere. They are in so many things. Quote Link to comment Share on other sites More sharing options...
sophiasapientia Posted June 20, 2016 Share Posted June 20, 2016 Have you been evaluated by a rheumatologist for possibilities of a connective tissue disease? Some of your symptoms sound like it could be on that spectrum (Dermatomyositis? Ehlers-Dalos?) Folks who have an autoimmune disease are at increased risk for developing more than one and they can be very hard to pin down. I hope you find some answers and relief! 2 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 20, 2016 Share Posted June 20, 2016 Oh, and don't eliminate gluten until AFTER being tested for celiac. Otherwise the results won't be accurate. 1 Quote Link to comment Share on other sites More sharing options...
Pippen Posted June 20, 2016 Share Posted June 20, 2016 (edited) I was homeschooled :) I remembered that this particular site/forum existed when I was chatting with some of my friends about our experiences as homeschoolers and now as some of us are starting to homeschool our own munchkins. And yes, there are more appropriate places to ask. However, I've been looking online and in books for months with no results worth mentioning. As I said, I've been to a lot of doctors, but they don't communicate with each other and all they have are lists of things they're pretty sure it isn't. At this point, I'm pretty much grasping at straws. So I figure if I post to a bunch of different forums, I'll hopefully find something constructive :D Since your symptoms are getting more serious and your doctors aren't communicating, I'd suggest getting a referral to a large teaching hospital--like Mayo Clinic. They are set up to handle diagnosing more complex cases in a short time period and they've seen stuff that may not be on the radar of your local doctors. Appointments with specialists that may take weeks or months to get into otherwise can be scheduled as part of the diagnostic visit. I had a relative who was dealing with a serious medical issue that the local hospital couldn't diagnose. After several weeks of deteriorating in the hospital, the family transferred her to Mayo and they had the condition nailed down within in 24 hours. Edited June 20, 2016 by Pippen Quote Link to comment Share on other sites More sharing options...
AngieW in Texas Posted June 20, 2016 Share Posted June 20, 2016 I would also recommend seeing a geneticist. It took 5 years for my daughter to get her diagnosis of Ehlers-Danlos Syndrome (which I asked her rheumatologist about 4 years ago due to a poster on this board). The geneticist already had a packet set up for us when we walked in the door because my dd's medical history made it clear that she had EDS, although she did do a physical exam that clinched the diagnosis. Getting a referral to see the geneticist may be an issue, but hopefully your doctor will be willing. I think my dd's doctor would have been willing if we had asked a year or two earlier, but I don't know that she would have ever suggested it on her own. And without the referral, we would still be sitting here with no diagnosis. At least now we know what to plan for. Quote Link to comment Share on other sites More sharing options...
kewb Posted June 20, 2016 Share Posted June 20, 2016 Lyme and it's coinfection friends. Find yourself a lyme literate doctor asap. 3 Quote Link to comment Share on other sites More sharing options...
Sharpie Posted June 20, 2016 Share Posted June 20, 2016 Another one chiming in on the possibility of Lyme and it's coinfections. Here's a blog I've been following of someone who is battling Lyme and it's coinfections. Some of your symptoms and hers are similar. http://www.thewildercoast.com/ 2 Quote Link to comment Share on other sites More sharing options...
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