Discussions By Condition: I cannot get a diagnosis.

Joint Pain... Please Help...

Posted In: I cannot get a diagnosis. 50 Replies
  • Posted By: wilson_gal22
  • February 15, 2007
  • 03:57 AM

Hello, My name is Christi. I am only 15 years old. I apologize in advance. This is going to be a long thread but PLEASE bear with me and read the details. You could be the answer I am looking for. The help I need. I have had joint pain since I was 13 years old. I played basketball, but too much running. I tried volleyball and I had a lot of foot pain. I had it checked out and I had a stress fracture in my left heal. The doctor didn't do anything.

Around end of 2004. Finally, I had a boot and then a cast. And in July I had surgery because the doctor said it was plantar fascitis(don't know about the spelling). I had had knee pain before this in both knees. One knee was said to have tendonitis. The other I am not really sure.

Then about 2 weeks after my foot surgery in Aug. 2005, I started havin pain in my wrist and elbows. I started going to a rheumotologist because I had a very high ASO titer. They thought it might be related to my joint pain. After a year he tells me he doesn't know anything about the ASO.:mad: And he didn't help my joint pain either.

Now, I have pain in both knees(mostly my right), my wrists, neck, back, shoulders, ribs, and sometimes my hips. :( I do not know why. Everyone seems to think whatever it is it isn't much. I feel like no one cares and I will never now. I am starting to think it is all in my head, but I know there must be some reason to explain it. I tell people 'my knee hurts' and they don't seem to think much of it. I know on the inside something isn't right, but feel like no one cares. I am just sick and tired of not knowing what is going on. No one seems to know what I am going threw, they all think it has gotten better, but I do not say much about it because nothing is done about it when I do so I just don't bother anymore.

Sometimes I cry myself to sleep because I am tired of not knowing what the cause is and I know there must be one. I do not care what the cause is because I can deal with it. I could deal with it better if only I could put a name with it.

So, please, if you know anything that could help me, speak up. If no one else is going to do something about it, I am. Thanks. If you have any additional questions you would like to know that may help me please feel free to ask. Thank You.

P.S. If you want to read in more detail my story, it is on lymenet and canlyme. It is 'Christi's Story'. Thanks.

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50 Replies:

  • I am curious as to whether you are Hypermobile at all? If the doctors have done blood tests to rule out forms of Arthritis they should be doing that anyway by now. As for the Hypermobile, or being double jointed as it was know years ago, look up Hypermobility Syndrome and check the Beighton scale and the Brighton Criteria. They are simple enough for you to do yourself and you will find hundreds of web pages about this, Hypermobility.Org is a good place to start.Hypermobility syndrome or HMS as its called is extremely overlooked by many doctors and Rhumatologist but can cause all of the symptoms that you have stated and yes, your right, its really painful and makes all your joints ache badly. Good luck and dont give up.
    Anonymous 42,789 Replies
    • February 16, 2007
    • 02:53 AM
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  • Sounds exactly like my daughter - she had to give up competitive figure skating because of the joint pain. They tried to blame it on her hypermobility but that didn't explain all the other syptoms she started to develop.After almost 2 years of trying to find out the cause we finally saw a doctor that recognized the symptoms as Lyme. The blood tests were negative and this is very common as they aren't good tests. You have to go to a doctor that can recognize the symptoms - and those doctors are hard to find.Go to www.lymenet.org or www.canlyme.com and look at the symptoms. Post your question there and someone will be able to help you and even suggest other possible causes. Good Luck!
    Anonymous 42,789 Replies
    • February 16, 2007
    • 03:01 AM
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  • Hi Christi, My name is Linn. I'm so sorry to hear of your pain and frustration at such an early age. I'm sure it is very difficult for you. Have your doctors diagnosed you with fibromyalgia? I know it seems to be a "bucket diagnosis" and I hate to mention it, but it sounds like you have some of the symptoms. I myself have similar symptoms and I am 45 years old. My symptoms started about 5 or 6 years ago. I was being treated for a back injury when they started and they have escalated since then. I am not sure if it is related to the medications (pain meds) or if it is something else. I have been seen by a very highly skilled reumatologist in my area for 2 years and I still have no diagnosis. I finally gave up. All the meds they gave me didn't help so I quit taking them. I guess I am lucky to have the back injury because that way I get the pain medication to help with the other pain, which is usaually worse than the back pain on a regular basis.My symptoms began by pain in my feet and ankles, moving into my hands and wrists, recently the pain has moved up toward my elbows and sometimes above my elbows. For the past 2 weeks, my hands have been extremely painful, especially in the evening and through the night. They always feel tight and when I try to make a fist, I can't move them very far at all before they have this tight painful pulling feeling. Sometimes I have to close them by gently pushing them with my other hand. I also have pain in my hips that started about 3 years ago, I had to give up walking. I used to walk anywhere from 3 to 6 miles a day. Now I can't walk more than a small block without needing to sit down. My doctor said my white blood count is 674? I guess that is due to the inlamation in my body. I am not sure what it all means, but I am very frustrated too.Do your parents believe you and support you? I know sometimes when we keep complaining of these weird symptoms and they can't find anything wrong with us, others tend to think we are making it up, or making excuses to get out of doing things. Even at my age, others think I am just looking for attention and don't want to hear it after awhile. However, I know when you hurt like many of us do, it is very hard to keep it to ourselves. You just need some sypmathy sometimes, don't yah.You take care Christi, and keep your spirits up. If you need to talk to anyone, feel free to email me linn@communitybroadband.com.Later, Linn
    Anonymous 42,789 Replies
    • February 17, 2007
    • 02:04 PM
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  • Thx for replying. I got referred to a rheumotologist for my high ASO levels. But, he failed to tell me that he didn't know anything about the ASO. He gave me several arthritis type medicines just to test them and some would seem to help the first week but it always came back. I have not thought of hypermobility. I will be sure to look it up. I have researched so many different things. As far as I know he checked for arthritis. Everything was always normal, but nothing seems to help. I don't take anything anymore like tylenol or aleve. I am tryin to just deal with the pain. Because eventually you become immune to those type of things so. I just deal and stay quiet about everything. I went to an infectious disease specialist about the ASO and he said it 'probably' had nothing to do with my joint pain or anything. But he also made the comment that I was 'the healthiest sick person he has ever seen'. So, by that I take he doesn't think it is real. I know it is. Whether or not anyone else believes me. One day they are going to find whatever it is I have and I will know that all this time I was right. My parents were behind me at first, but they don't really know. The past 2 weeks my knee and stuff have hurt more than ever. They hurt at school and all day. Which they never really did before. I made the comment to my mom that she didn't care enough to take me back and my dad said in her defense that if she didn't care she wouldn't have took me to all the others. But it would mean more to me if she would keep on like me until they find something. Anything. I just want to know that I am not crazy. She told one of our neighbors, who is an RN, about it and she said 'fibromyalgia.' I, of course, researched it right way. All of the symptoms seem to fit me. But I also read that, like me, it is a disease that people mistake for 'being in the head' and that it can sometimes take upwards of 5 years to diagnose. The hypermobility thing might fit. Seeing as here lately my knee when I bend it or stand on it straight for to long feels like it is like popping out of place or something. All of my bones have started to pop and when I put my hand on them I can feel them like having this grinding-ness to them. I can make my bones pop to. And I have noticed that my right leg when I have it straight with my other leg it like bends in more. My left leg is straight but my right leg dips in at the knee. It is really weird looking to me! I think it has really started to affect me though. I get depressed sometimes because I feel like no one will listen. I am not as 'fun' as I used to be. I am very active I love the outdoors and I love sports. Which I gave up because it hurt to bad to play. I do plan on trying-out for tennis this year. I am determined to get back were I was no matter how much it hurts. I act more down then I used to be. I am very outgoing and funny. Now, I hardly do anything. Besides the last time I played was my 8th grade year(i am in 10th now) and I played volley-ball, I went to the doctor with my foot hurting and I had a stress fracture, so he said. I didn't even know or know how I did. So, I get worried that I am going to fracture something again and not know it! But, I have not suffered any in school. My grades are better than ever because I never really talk to anyone anymore. Therefore I have a lot of time to listen! But anyways, thanks very much for commenting and I will defiantly look into it. I mean I may end up diagnosing myself! Which may happen someday. After all, I do plan on being a doctor. But, thanks so very much for listening.:)
    wilson_gal22 46 Replies
    • February 17, 2007
    • 07:05 PM
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  • Hi Christi, Do your parents believe you and support you? I know sometimes when we keep complaining of these weird symptoms and they can't find anything wrong with us, others tend to think we are making it up, or making excuses to get out of doing things. Even at my age, others think I am just looking for attention and don't want to hear it after awhile. However, I know when you hurt like many of us do, it is very hard to keep it to ourselves. You just need some sypmathy sometimes, don't yah. You take care Christi, and keep your spirits up. If you need to talk to anyone, feel free to email me linn@communitybroadband.com. Later, Linn Well, my parents did at first but I don't think they do now that I have been to almost every specialist around here and now of them seem to think anything. But, I have wanted to be a doctor for a really long time, so I have always done my research. With this I have learned that, in my case, it could be that I live in a small town. Out of the doctors I have seen only one sat and asked me questions about pets, family, and everything. He actually stayed in the room for more than 5 minutes to listen to what I had to say. My rheumotologist on the other hand rushes and doesn't ever really say anything. My mom and I will ask something and he never really answers it. I could tell I didn't like him the first time. I sure don't think he is very good. I said I would rather live with it than ever go back to him. I haven't seen a doctor thought in a year 1/2 when I had foot surgery. They just thought I had tendonitis in one knee and some word in the other. And I had foot problems, but I started having everything else about 2 weeks after my foot surgery. I will give credit to the doctor who did my surgery. It took him a year before he did anything. It was first a stress fracture and he didn't do anything. Then I went back and it was a like a heel spur. I had to wear a boot and every month I went back. I had a cortisone shot in my heel. Didn't help. Pain medicine. didn't help. Had a cast. Didn't help. So surgery was left. He said it was plantar fascitis. I had to see a specialist for his opinion first and he said the other doc did everything right and he agreed and I needed the surgery. Then I had a nerve test to make sure it hadn't caused nerve damage that would need repairing while in surgery. Then on July 19, 2005 I had the surgery. And a year 1/2 later I think it worked. :D But I would trade it to be back where I was before. Now everything hurts! But, I think people do think that I just make it up or something. I have stopped complaining for the most part because no one listens anyways. But, I know that it IS something and I am not going to stop until they say it is. And I have thought about giving up but I know if I do I will never get the diagnosis that I need. So, for now I am just going to wait. And research. And I WILL go back. Here lately I have complained trying to drive my mom crazy until she takes me back! And then they will play ping-pong with me again until they find something. Only this time I am going to suggest things. Because I have read about so many things that it could be I want them to rule everything out! I guess you could say I am very headstrong and I will NOT give up. Well, I am sorry these always have to be so long, but once I get started on the subject I have to say everything I feel so that people can understand me better. Thanks for all the help and support. Thank you very much.
    wilson_gal22 46 Replies
    • February 17, 2007
    • 07:26 PM
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  • Well, I read over some stuff, and I don't think I have hypermobility. Of course, I don't guess I could be for sure, but according to the test things, I am not. Thanks anyways for the suggestion. I am open to anything. I do have one foot over the line for fibromyalgia. But, if so, I don't have a very severe case. I am not sure though. But, like I said, I am open to any opinions anyone may have. I will try anything. I did try the test things for hypermobility and now I hurt. :( But I could not do the stuff it was asking! So...anymore suggestions? Anything? Please let me know. Any questions or anything....I am very very open. Thanks so much for everything. Keep hanging on!;) Christi
    wilson_gal22 46 Replies
    • February 18, 2007
    • 00:27 AM
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  • Hormone changes can also cause this type of pain. Perhaps check with an endocrinologist or have your doctor test the thyroid hormone at least (TSH level). Good luck.
    Anonymous 42,789 Replies
    • February 18, 2007
    • 00:37 AM
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  • I want to apologize in advance for this being so long. Please read it though. No my doctors have not diagnosed me with fibromyalgia. They have nevered mentioned it. I have thought about it and I match all or most of the symptoms. I am not sure of course. From what I have read it takes a long time to diagnose it. But, I did the pressure point thing and I had pain in most of the points so, I don't know. My parents were with me at first but now that I have been to so many doctors who have said they couldn't find nothing I don't think they are. I think they think I am fine and they are satisfied with what the doctors say. I will say something hurts and they say well the docs couldn't find nothing wrong. I am the on with the pain and frustration. And I am the one who gets depressed and crys myself to sleep over it. I just want an answer and I don't think that is asking to much. If someone is having any kind of symptoms at all, there is something wrong. I know there is and I am not giving up. Not until I find whatever it is out. Whatever it is I will deal with it. I just want a name. And a diagnosis. And some help.I want to know that it is NOT in my head. It can't be though. Here are all of my symptoms: First off, I am a 15 yr old female. About 5'5" 170 lbs. (Actually I feel shorter because everyone is starting to be taller than me now for some reason. Maybe I am shrinking!) I have joint pain. Sometimes I have muscle pain. I have these weird little muscle spasms sometimes. I have headahces. I get depressed. I also have irregular periods. When I do have them they are really really painful. I miss school for a day or two. I stay in bed and either sleep when I can or cry. I have also noticed hard-like things on the inside part of my elbows. I am not sure if that is normal but I have never noticed before. My back and neck hurt when I sit staight up. I have started to notice that I sit leaned over all the time. And sometimes I sort of lean to the left. And I get these shooting pains to the right side of my neck. And once I was playing tennis and out of no where my right side of my neck started having shooting pains and they hurt really bad. I couldn't move my neck for a week. It hurt to tilt it to the right because it felt like it was popping out or pulling something. My bones pop a lot. My back, neck, knees, elbows, wrists, whatever else. But sometimes, my elbow like pops out of place and I feel pressure and when I move it it pops really loud. I have also discovered many new bones that I can pop on the spot over and over again. Sometimes I get pain in my chest. Under my left ribs. I have a high ASO which I have not had checked in a while, but I have read that having a high ASO titer for a prolonged period of time causes heart damage. Endocarditis. So, it worries me a lot. I have also noticed that when I press on my ribs they hurt really bad. I have pain on my left and right side and lower and upper body. The pain usually hurts more on the right side. Wow, I know that is a lot and it is very unbelieveable, but I think that might be all. I am probably forgetting something. But, I want to be as detailed as possible so that people can help better. If you have any other questions regarding my health or something you would like to know that could help you help me, feel free to ask. I am open to anything. I do a lot of reseach so if you know of anything tell me and I will jump on it right way. Thanks so much for reading this and for caring enough to try and help me. I really do appreciate it.
    wilson_gal22 46 Replies
    • February 18, 2007
    • 00:53 AM
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  • Hormone changes can also cause this type of pain. Perhaps check with an endocrinologist or have your doctor test the thyroid hormone at least (TSH level). Good luck. Thanks, I will see about doing that. I have to find a way to convince my mom! I do a lot of research on my own. So, I am the only one working on finding some thing wrong with me. Thanks though I will defiantly look into that. Christi
    wilson_gal22 46 Replies
    • February 18, 2007
    • 00:55 AM
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  • Hmmm....I read about hypothyroidism and I have some of those symptoms to. A lot of them have to do with muscle and joints aches. And I used to be a skinny kid. I have always played sports. I had to workout and run alot when I played for the school teams in 7th and 8th grade. But I still gained weight. I am now 170+-. I am not sure though because my mom side of the family is around what I am but I am only 15. My weight has went up alot in the past 2 years. I was still active though. We also worked out in P.E. everyday, doing push-ups for forever. Our coach was crazy! I still try to be active I run and skate and stuff. And I play sports at home and stuff. I have actually thought about myself in many different ways one being that I considered my weight as a symptom. I also have the depression symptom. I stay depressed about things. I don't know why. I try to control it but sometimes I just get so angry and I will cry myself to sleep praying that I could get an answer. Now that I am reading some more about this. I have most of the symptoms. Except for like 2 of them. Which I sometimes have a hoarse voice so I guess I could count that one to. I don't know if my face is puffy! I guess it isn't any different than usual. Then again it might be puffy now I just can't remember it not being the way it is! Well, I will see about getting the test. If I can convince some people again. Thanks for the help! Christi
    wilson_gal22 46 Replies
    • February 18, 2007
    • 01:17 AM
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  • Ok, I have done some more research and I have found that many people who are diagnosed with fibromyalgia are also diagnosed with hypothyroidism. And vise versa. Some doctors believe that the hypothyroidism causes the fibro. and therefore by treating the hypo. it can control fibro pain as well. I don't really know all I know is that I have all or most of the symptoms for both of them. Now, I have to find a way to get the tests. I have no clue how to get my mom to take me back and for me to actually speak up about it. They think I am crazy seeing as I am only 15. They probably think I am just looking stuff up on the internet and throwing it out there. I have done a lot of reading and I would have to say that these could be the ones. But, my parents and everyone does not take me seriously. Hypo occurs mostly in older females(I believe), but it can also occur in new borns and teens. I read of some people who started having symptoms around the same age as I am and were diagnosed with both. Well, I guess I will keep looking. Anymore suggestions? Or agreements? Thanks for the help! :D Christi
    wilson_gal22 46 Replies
    • February 18, 2007
    • 03:24 AM
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  • Go to lymenet.org and post your exact same questions over there. You are going to be stunned at the responses you get from other people who will think you are talking about them. I can guarantee that! Your problems sound exactly like a bacteria.
    Anonymous 42,789 Replies
    • February 18, 2007
    • 03:26 PM
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  • Hypothyroidism and Fibromyalgia are very commonly confused for Lyme or another bacterial coinfection. If you go to canlyme.com you can read more and I'm confident you will see many similarities right up to problems getting a diagnosis.
    Anonymous 42,789 Replies
    • February 18, 2007
    • 03:27 PM
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  • Ok, thanks, I will defiantly go to both of those sites. I was actually asked the question if I had gotten bitten by a tick recently on some of the forms I had to fill out for one of the doctors I went to see, but I couldn't remeber so I think we put no. I guess that is why it asked that because it seemed like a very random question at the time. Thanks though I will defiantly look into lyme. I don't guess I ever thought of that. Mostly because I really didn't know what it was til now. Thank you guys very much. :D Christi
    wilson_gal22 46 Replies
    • February 18, 2007
    • 04:35 PM
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  • Well, I registered for the one site and the other I read the whole list of "75" symptoms. I did print it out and circle the ones I had. Or have had. Which is hard because I don't know if it was just a one time thing or if it was a symptoms. So, I had around 22 of the same symptoms. I think it is a possibility defiantly. I don't know what to do now though. My parents really don't take me seriously when I say 'hey, mom I could have this or that and die from it' and she thinks I am just being crazy. Also, I have no clue if I have ever been tested for it. I have had a hundred blood tests and all they did was take like 5-10 viles and we would call and they would say 'normal', the only ones I know I have had are ASO titer, I think arthritis, and kidney and liver function. All, but the ASO, were about a year or more ago. Plus, I think my doctors aready think I am crazy what are they going to say when I tell my mom 'hey I have done some research and I think I could have one of these. And she actually takes me seriously(yea right) and she calls the doctor and says 'she thinks she has one of these, will you order the tests?' Then, they are really going to think I am crazy at 15 for trying to diagnosis myself! :rolleyes: So, I don't know to do. I am lost. I want to be tested or check for everyones suggestions because I agree, but I don't know how to go about it. If you can offer your opinion or support, that could sure help me. Thanks for everyones voice in this. And thanks for reading.Confused :confused: Christi
    wilson_gal22 46 Replies
    • February 18, 2007
    • 05:05 PM
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  • Well, let's see. I have been researching all day. I did the survey for lyme disease which said more than 20/75 should see the doctor for possible lyme disease. I had 22/75. I have most/all of the symptoms for hypothyroidism. And I have all or most of the symptoms for fibromyalgia and enough of the pressure points for it to be fibro. And I have parents and doctors who think it is nothing to worry about and that it is in-a-way in my head. Is there something wrong with this or is it just me? So, how am I supposed to go about being tested for any of it? I don't know either. So....any more suggestions as to what it could be? I match 3 things perfectly why can't there be more than that! Well, if you can come up with anything at all, let me know. Or if you just agree with any of the other stuff. Thanks in advance for all your help. And thanks for the support. At least somebody doesn't think it is 'all in my head.' Thanks. :D Christi
    wilson_gal22 46 Replies
    • February 19, 2007
    • 03:33 AM
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  • You may also check for a stomach ulcer. I had the exact symptoms you have plus extensive joint swelling. What I was told is that the stomach ulcer is bacterial and requires 3 antibiotics, used continuosly, to calm it down. I feel so much empathy for you. It's a shame many people in our medical community don't seem to care unless they can perform surgery or prescribe expensive tests. My first visit to the doctor for this condition cost $1309.00 plus $797.00 in lab fees, and he said he wasn't sure what I had. Keep doing your investigation and when you go to the next doctor, be firm. State your thoughts on a diagnosis and DEMAND that they check for them. If they won't do the research, you have to. Unfortunately, it's frustrating and takes time, since we're not trained. But, you will become very knowledgeable and attuned to your own body. It is YOUR health and you own it.
    Anonymous 42,789 Replies
    • February 19, 2007
    • 04:27 PM
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  • Thanks alot for that. Unfortunalty, I don't know how much longer I can last. Last night was 1 of many nights that I cried myself to sleep. I had a really bad sore throat like I get. And a really bad headache. Today, I had school which was not any picnic. I hated it. I have been having really bad mood changes suddenly. Yesterday I went off on my brother because he said something to me with an attitude. Once, I am over it, I feel so stupid, wondering why I didn't control myself. Today, school for me has become a pain because I don't like being around people because I am like parenoid or something. I feel like people are looking or talking about me. I have not really been here today. I have had a headache all day. And I am getting angry really easily. I have not been focused at all. And I have been really 'bi-polar.' I am just sick of everything. I feel like I need to be locked in a room by myself. I don't know though. I just don't know how much longer I can go. I notice stuff everyday. I have noticed serious mood changes. And my knee has been hurting nonstop really bad for 2 weeks now. I read about the lyme disease and constant bad pain(mostly in the knees) in one of the symptoms of the progressed stage. Which I have been having these symptoms for a year and 1/2 now so it makes sense. But, I don't know what to do. My mom said she would make an appointment with my orthopedist as soon as we are out of school. (For my knee pain) I just don't know it I can be like ' Well, I have done some reading and gotten several peoples opinions and I think I could have lyme disease.' I don't know though. I feel worse now than I ever have. I realise the mood changes and I am trying my best to control them. Also, my neck is hurting when I tilt it from side to side. It has done this before though. I have been having chills to, but no fever. I also noticed that I cry really easy. Someone can just be talking to me and I will tear up for no reason. Well, I could really really use some HELP....please anything. I just don't think I can handle this much longer. Thanks for everything so far though....thanks for caring so much...and thanks for reading this and offering your opinions.Thanks, Christi
    wilson_gal22 46 Replies
    • February 19, 2007
    • 10:04 PM
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  • Hi Christi. Check you personal messages over at the site you registered on.Nancy
    Anonymous 42,789 Replies
    • February 20, 2007
    • 04:27 PM
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  • Oh ok, thanks. I didn't know I could do that! :D Also, I have felt better today.:) I had to go to school (:( ) yesterday because this week is the last week before trimester exams and I have already missed to many days sick this winter. So, when I got home yesterday at 4 I went to bed and slept til this morning at 6:30. I have felt better today. I think my headache really affected me yesterday. I realize just how bad yesterday was compared to today. I don't know what happened yesterday. But, today I asked my mom when my aunt would call, because she is and R.N. and has given an opinion on my care. I told my mom to ask her about lyme disease. She said that is what she had thought at first. So, I told her about all this and I am supposed to go to the doctor next week Wednesday(hopefully, because I hurt my wrist.) It has hurt before but I am a very crazy-dangerous person, which doesn't help, and I went snowboarding down a hill of pine-needles. Which worked until I put my skate ramp at the top. Then, lets just say I never made it down after that. I fell forward and landed on my hands a lot. My wrist was hurting very bad and like a dumby I kept pushing it. So, I think I actually hurt it for real. But, my knee has been hurting for 2 weeks straight constantly, which from what I read is one of the progressed stages of lyme. So...I am going to tell him just what I think it could be and what I want to be tested for! I am going to tell HIM!! Well, thanks for the help and support. You don't know how much this means to me. I feel like I am now one step closer to getting something done! I will keep you guys posted and let you know what he says! Hopefully you guys gave me the answer to this puzzle which has controled my life for some time now! I can not thank you guys enough! Thanks so much! God Bless! :D *Christi*
    wilson_gal22 46 Replies
    • February 21, 2007
    • 03:20 AM
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