Discussions By Condition: I cannot get a diagnosis.

Unexplained pain for over a month

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: Mystery Pain
  • May 11, 2010
  • 08:33 PM

I have a 15-year-old daughter who is in excruciating pain. It started with a dull headache in November. Next, came the migraines. She has had them since January. They last a week or more, and then it goes back to the dull headache for three days, or so, and then the migraine comes back. She was treated with Topomax, but the psychological side affects were too bothersome, and we never got it up to a dose where it would do any good. Now she is on 20 mg of amitriptyline, once a day. That has not taken care of the migraines either. About a month ago, she started having pain in her left leg. It was an extreme pain, from just above the knee, down to the ankle. She was in tears. We went to the ER, they gave her some IV meds, and sent her home. They said that it was probably related to the migraine. Two neurologists have said that it is not related to the migraine, and they don’t believe that it is neurological in origin. I took her to a rheumatologist. He did several blood tests. Last night she started having the same kind of pain in her left arm. She said that it feels just like the leg did. When the pain in the leg started, she had a weakness in her left arm, but it wasn’t painful. Today I called the rheumatologist, and they said to bring her in. When we got there, we got the blood results, and they were all normal. He said that it was something like, fibromyalgia, but not exactly because that is more diffused, so maybe a regional pain syndrome, “If you wanna put a name on it.” We still have no idea what is causing this, or where it will lead next. She is unable to walk because it is very painful, and when she tries to put pressure on her leg, it buckles under her. She is using crutches. He told her that she doesn’t need the crutches, and she should stop using them. Even when she has had a slight relief from the pain, she was not able to walk because her leg buckled under her.

Two years ago she had a period of two weeks where she had a fever that we could never find a cause for. A couple of days after the fever went down she started having stomach problems which turned out to be biliary dyskinesia, gallbladder disease in the absence of gall stones. She had her gallbladder removed. I don't know if this is in any way related, but I just think it is strange to have so many unexplained things going on in such a young girl.

Tests that have been done include. A bone scan, which showed less circulation in the left leg, also called decreased uptake. She was tested for inflammation and lupus -- negative. Her liver enzymes were high, for a few months. They are normal now. MRI and MRA were normal. She had a vitamin D deficiency which we took care of with supplements.

Does anyone have any ideas what this could be? The pediatrician mentioned possibly Reflex Sympathetic Dystrophy. The neurologist said that he had never known it to happen in the absence of an injury, but I have read that it does happen that way, sometimes.

Please help!

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13 Replies:

  • hi was just reading this and thought of lupus.you know you can till have lupus and it not show up in blood tests. i waited five years before i got diagnoised.and even now though i definatly have lupus my blood show's nothing at times. this fever she got years ago did she have any rash at all on her neck, face etc ?i have lupus 10 years now and only last year did i start to get a rash on my neck. can you say anything else about your daughter like do her muscles hurtor joint pain does she feel sick or unwell in the sun? anything at all like cold hands or feet. ps only joined this site just now but its good :)
    nicci-c 6 Replies Flag this Response
  • She does not have any joint pain, but her muscles in her left leg and arm hurt, and also her right thumb. I don't recall a rash at the time that she had the fever. Her left leg is ice cold in comparison to her right leg. This was pointed out to me by the rheumatologist. As far as the sun goes, I live in Michigan, and it is just now spring. Also, she has terrible migraines, and she spends most of her time in low light. Sometimes her headache gets worse from the sun. She has not spent any time in direct sunlight recently. I have heard that you can have lupus even if it doesn't show up in the blood. how did they finally diagnose you? When we left the doctor today, he seemed sure that there was nothing to worry about and that she didn't have lupus. The thing I am worried about is, what if they missed something, and she ends up worse because it wasn't caught early enough. Can you tell me a little more about your experience with lupus? PS. I just joined today, too. I have been searching through the information here for months.
    Mystery Pain 10 Replies Flag this Response
  • I have a 15-year-old daughter who is in excruciating pain. It started with a dull headache in November. Next, came the migraines. She has had them since January. They last a week or more, and then it goes back to the dull headache for three days, or so, and then the migraine comes back. She was treated with Topomax, but the psychological side affects were too bothersome, and we never got it up to a dose where it would do any good. Now she is on 20 mg of amitriptyline, once a day. That has not taken care of the migraines either. About a month ago, she started having pain in her left leg. It was an extreme pain, from just above the knee, down to the ankle. She was in tears. We went to the ER, they gave her some IV meds, and sent her home. They said that it was probably related to the migraine. Two neurologists have said that it is not related to the migraine, and they don’t believe that it is neurological in origin. I took her to a rheumatologist. He did several blood tests. Last night she started having the same kind of pain in her left arm. She said that it feels just like the leg did. When the pain in the leg started, she had a weakness in her left arm, but it wasn’t painful. Today I called the rheumatologist, and they said to bring her in. When we got there, we got the blood results, and they were all normal. He said that it was something like, fibromyalgia, but not exactly because that is more diffused, so maybe a regional pain syndrome, “If you wanna put a name on it.” We still have no idea what is causing this, or where it will lead next. She is unable to walk because it is very painful, and when she tries to put pressure on her leg, it buckles under her. She is using crutches. He told her that she doesn’t need the crutches, and she should stop using them. Even when she has had a slight relief from the pain, she was not able to walk because her leg buckled under her. Two years ago she had a period of two weeks where she had a fever that we could never find a cause for. A couple of days after the fever went down she started having stomach problems which turned out to be biliary dyskinesia, gallbladder disease in the absence of gall stones. She had her gallbladder removed. I don't know if this is in any way related, but I just think it is strange to have so many unexplained things going on in such a young girl. Tests that have been done include. A bone scan, which showed less circulation in the left leg, also called decreased uptake. She was tested for inflammation and lupus -- negative. Her liver enzymes were high, for a few months. They are normal now. MRI and MRA were normal. She had a vitamin D deficiency which we took care of with supplements. Does anyone have any ideas what this could be? The pediatrician mentioned possibly Reflex Sympathetic Dystrophy. The neurologist said that he had never known it to happen in the absence of an injury, but I have read that it does happen that way, sometimes. Please help!Hi, unfortunately I can't help with what the problem is, but I do know how frustrating this is for you. I have an 11 year old son who has suffered with stomach pain (?IBS?) but has started getting pains in various limbs and his back. The most troublesome is his right knee. He suffers excruciating pain just below his knee cap and it even hurts if you run your finger lightly over it. They have told him to get off his crutches and splint and to walk on it but this is not possible as it is just too painful and weak. However, again they have done xrays and blood tests but can't find no reason. We are currently awaiting an MRI scan. At the moment they believe he has a problem with pain (intollerant to it or psychosymatic) but I feel it is more than this as he is happy and doing well. The doctors wanted me to try him on amitryptaline but I did not want him on this kind of medicine until they can tell me for definite what it is. So please take comfort in that someone does understand what you are going through as it really feels like you are fighting a losing battle. x
    beverley1979 2 Replies Flag this Response
  • She does not have any joint pain, but her muscles in her left leg and arm hurt, and also her right thumb. I don't recall a rash at the time that she had the fever. Her left leg is ice cold in comparison to her right leg. This was pointed out to me by the rheumatologist. As far as the sun goes, I live in Michigan, and it is just now spring. Also, she has terrible migraines, and she spends most of her time in low light. Sometimes her headache gets worse from the sun. She has not spent any time in direct sunlight recently. I have heard that you can have lupus even if it doesn't show up in the blood. how did they finally diagnose you? When we left the doctor today, he seemed sure that there was nothing to worry about and that she didn't have lupus. The thing I am worried about is, what if they missed something, and she ends up worse because it wasn't caught early enough. Can you tell me a little more about your experience with lupus? PS. I just joined today, too. I have been searching through the information here for months. hi hun its hard what she and others are going through they are so young. with her thumb does it twitch?when i was a teen i suffered headaches and when under 10 year of age also sore throats.i also suffered growing pains. i know there were days when i felt ill and could not fiqure out what the problem was. just trying to remember it was so long ago :eek: its needs a trigger in my case my nan died when i was 25 and that was the start of my lupus, at 32 i got diagnosied after years of going in and out of the doctors and hosiptal tests.my daughter hers started although not proper when she reached pubity.and really kicked off when she got pregant at 19 even though she lost the featus.do you have any rhumertoid arthritis in your family that you know off?even in cousins etchow has she been today? nicci
    nicci-c 6 Replies Flag this Response
  • I have a 15-year-old daughter who is in excruciating pain. It started with a dull headache in November. Next, came the migraines. She has had them since January. They last a week or more, and then it goes back to the dull headache for three days, or so, and then the migraine comes back. She was treated with Topomax, but the psychological side affects were too bothersome, and we never got it up to a dose where it would do any good. Now she is on 20 mg of amitriptyline, once a day. That has not taken care of the migraines either. About a month ago, she started having pain in her left leg. It was an extreme pain, from just above the knee, down to the ankle. She was in tears. We went to the ER, they gave her some IV meds, and sent her home. They said that it was probably related to the migraine. Two neurologists have said that it is not related to the migraine, and they don’t believe that it is neurological in origin. I took her to a rheumatologist. He did several blood tests. Last night she started having the same kind of pain in her left arm. She said that it feels just like the leg did. When the pain in the leg started, she had a weakness in her left arm, but it wasn’t painful. Today I called the rheumatologist, and they said to bring her in. When we got there, we got the blood results, and they were all normal. He said that it was something like, fibromyalgia, but not exactly because that is more diffused, so maybe a regional pain syndrome, “If you wanna put a name on it.” We still have no idea what is causing this, or where it will lead next. She is unable to walk because it is very painful, and when she tries to put pressure on her leg, it buckles under her. She is using crutches. He told her that she doesn’t need the crutches, and she should stop using them. Even when she has had a slight relief from the pain, she was not able to walk because her leg buckled under her. Two years ago she had a period of two weeks where she had a fever that we could never find a cause for. A couple of days after the fever went down she started having stomach problems which turned out to be biliary dyskinesia, gallbladder disease in the absence of gall stones. She had her gallbladder removed. I don't know if this is in any way related, but I just think it is strange to have so many unexplained things going on in such a young girl. Tests that have been done include. A bone scan, which showed less circulation in the left leg, also called decreased uptake. She was tested for inflammation and lupus -- negative. Her liver enzymes were high, for a few months. They are normal now. MRI and MRA were normal. She had a vitamin D deficiency which we took care of with supplements. Does anyone have any ideas what this could be? The pediatrician mentioned possibly Reflex Sympathetic Dystrophy. The neurologist said that he had never known it to happen in the absence of an injury, but I have read that it does happen that way, sometimes. Please help! hi hun just wrote post and the site then said i had to resign in. the jest of first email was when i was a under 10 years old suffered sore throats and in teens headaches. also had growing pains. lupus needs a trigger in my case it was stress as my nan died when i was 25 in my daughters case it was pubity but really kicked off when she was pregnant at 18 she lost the featus. uptill then the doctors did not know what was wrongher bloods always showed up negative. {i knew and did not say it out loud to her }she would be unwell she suffered terrible stomach pains and headaches also sore throat's, she had no joint pain but sometimes her cheeks or neck would be red. with your daughters thumb does it twitch?do you have any rhumertoid arthritis in your any of your family including great great etc grandparents as this can lay dormant for generations. it happened again said it logged out but i saved text this time:Dbeverly hope your on gets betterniccips i had a dull headache for 5years and nothing worked till they gave plaquinal and have not had that headache since xxx
    nicci-c 6 Replies Flag this Response
  • She does not have any joint pain, but her muscles in her left leg and arm hurt, and also her right thumb. I don't recall a rash at the time that she had the fever. Her left leg is ice cold in comparison to her right leg. This was pointed out to me by the rheumatologist. As far as the sun goes, I live in Michigan, and it is just now spring. Also, she has terrible migraines, and she spends most of her time in low light. Sometimes her headache gets worse from the sun. She has not spent any time in direct sunlight recently. I have heard that you can have lupus even if it doesn't show up in the blood. how did they finally diagnose you? When we left the doctor today, he seemed sure that there was nothing to worry about and that she didn't have lupus. The thing I am worried about is, what if they missed something, and she ends up worse because it wasn't caught early enough. Can you tell me a little more about your experience with lupus? PS. I just joined today, too. I have been searching through the information here for months. i can- not get on the tread to anwer email it wont let me post.prop wont be able to post this either but here goes.hi hun just wrote post and the site then said i had to resign in. the jest of first email was when i was a under 10 years old suffered sore throats and in teens headaches. also had growing pains. lupus needs a trigger in my case it was stress as my nan died when i was 25 in my daughters case it was pubity but really kicked off when she was pregnant at 18 she lost the featus. uptill then the doctors did not know what was wrong her bloods always showed up negative. {i knew and did not say it out loud to her }she would be unwell she suffered terrible stomach pains and headaches also sore throat's, she had no joint pain but sometimes her cheeks or neck would be red. with your daughters thumb does it twitch?do you have any rhumertoid arthritis in your any of your family including great great etc grandparents as this can lay dormant for generations. beverly hope your on gets betternicci
    nicci-c 6 Replies Flag this Response
  • i can- not get on the tread to anwer email it wont let me post.prop wont be able to post this either but here goes.hi hun just wrote post and the site then said i had to resign in. the jest of first email was when i was a under 10 years old suffered sore throats and in teens headaches. also had growing pains. lupus needs a trigger in my case it was stress as my nan died when i was 25 in my daughters case it was pubity but really kicked off when she was pregnant at 18 she lost the featus. uptill then the doctors did not know what was wrongher bloods always showed up negative. {i knew and did not say it out loud to her }she would be unwell she suffered terrible stomach pains and headaches also sore throat's, she had no joint pain but sometimes her cheeks or neck would be red. with your daughters thumb does it twitch?do you have any rhumertoid arthritis in your any of your family including great great etc grandparents as this can lay dormant for generations. beverly hope your on gets betternicci LOL. You have to give it a couple of minutes to post, sometimes. Thank you for your diligence. Today her pain went to her right arm and then right leg. We will be seeing her neurologist on Friday. I am going to ask him about complex regional pain syndrome. I asked him about it before, but he said that he had never seen a case that was not precipitated by an injury. I know that these cases exist because I have read about them. The rheumatologist said that it is a "regional pain syndrome." That is the only regional pain syndrom that I have ever been able to find. He gave her Tramadol. I am hoping that her neurologist will manage both meds, for her. She is on amitriptyline for her migraines. I looked up both meds, and you need to be careful using them together. Her dose of amitriptyline is low enough that I wasn't concerned about using them both, for a couple of days, until her next appointment. I will post again when I get more information. If you have any other suggestions, please let me know. I think I will ask her doctor to do an ANA blood test, every so often, just in case, especially if we don't get any answers. We need to figure out how to treat her because, at this point, she can't even go to school. She is having more and more difficulty getting around on crutches. It is everything she can do to get a short distance to the bathroom, at home. Oh, yeah, one more thing. When we went for her bone scan, they asked her to go to the bathroom before they put her under the scanner. She could not go, so she just left the bathroom, and continued to have the scan. when they got her on the table, they asked her to try again because her bladder was full. She couldn't go, so they ended up putting a lead bag over it, so that it wouldn't show up in the scan. Today, she went until about 5 p.m, without going to the bathroom, from about noon, yesterday. That concerns me, also. There are just too many questions, here. Does anyone ever get a diagnosis before the blood work comes back positive? It would be great if someone would try some lupus meds, to see if they work. I know that probably isn't something that doctors would do.
    Mystery Pain 10 Replies Flag this Response
  • Welll, we went back to the neurologist yesterday. Her neurologist is in an office with a Physical Medicine and Rehabilitation doctor. He referred her to his partner. She will be having an EMG next Friday and then we have an appointment for a consultation with him the following Monday. I also worry about her school. Her note takes her to next Thursday. If she is out after next Thursday, and I expect that she will be, we will have to get another note, and then get approval from the district to continue having homebound services. It seems that they sometimes get a little impatient with her being out. At this point, the pain is affecting her left leg, left arm, and right leg. She is having constant intense aching, occassional burning, and stabbing pain in all three. Her left leg was the first to become affected, and that is the worst one of all. I will keep you posted. Thanks
    Mystery Pain 10 Replies Flag this Response
  • Now she is having dizzy spells while laying down. I have never heard of such a thing. Does anyone have any ideas?
    Mystery Pain 10 Replies Flag this Response
  • Mystery pain,I can really feel for you and your daughter. I don't know where you live or ifthere is a University Hospital around you, however, I can tell you from myown experience that as far Neuro's, alot of them are specalized in one field. Do research on your doctors you are taking your daughter to, find THE TOP DOCin neuro-muscular and don't walk but run! It sounds like your daughters condition is progressing for sure. Good Luck to you both, I'll keep you in myprayers.Ms. Judy
    Anonymous 42789 Replies Flag this Response
  • Well, when I took my daughter to her current neuro for the first time, I found out that they are actually a practice that specializes in "Physical Medicine and Rehabilitation." There is a neurologist and a "Physical Medicine and Rehabilitation" doctor there. The neuro referred her to the other doctor. The neuro is going on vacation and the PMR doctor is going to do an EMG on Friday. I live in Michigan, and I did check with UofM hospital. My pediatrition would have to refer her, and there is no telling how long it could take to get in. I will see if I can find a neuromuscular doctor. I will also look further into the credentials of my current doctors. It really scares me that this is getting so much worse. Thanks for your suggestions. Here is the link to their website. Please tell me what you think. http://www.dswmd.com/ She has seen Dr. Turner, and will be seeing Dr. Seidel for an EMG on Friday, and then for a consultation on the following Monday.
    Mystery Pain 10 Replies Flag this Response
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  • Hi, unfortunately I can't help with what the problem is, but I do know how frustrating this is for you. I have an 11 year old son who has suffered with stomach pain (?IBS?) but has started getting pains in various limbs and his back. The most troublesome is his right knee. He suffers excruciating pain just below his knee cap and it even hurts if you run your finger lightly over it. They have told him to get off his crutches and splint and to walk on it but this is not possible as it is just too painful and weak. However, again they have done xrays and blood tests but can't find no reason. We are currently awaiting an MRI scan. At the moment they believe he has a problem with pain (intollerant to it or psychosymatic) but I feel it is more than this as he is happy and doing well. The doctors wanted me to try him on amitryptaline but I did not want him on this kind of medicine until they can tell me for definite what it is. So please take comfort in that someone does understand what you are going through as it really feels like you are fighting a losing battle. x Beverly, if your son hasnt been tested, have him tested for Celiac disease. Celiac disease is sometimes mistaken for IBS and can cause bone and joint pain and other symptoms.
    taniaaust1 2267 Replies Flag this Response
  • Ok, here is the latest: Last night, around 5:00 she started having terrible pain in her left arm. I went over to her to see if I could seen anything unusual, and do the sympathetic mother routine, knowing that there was nothing I could do for her. Low and behold, her left arm was swollen up 3" larger than the right. :eek: I called her pediatrician who said to take her to the ER. I went to the nearest ER and waited 3 hours. After 3 hours, they told us that it was going to be a 5 hour wait. (when we got there, we were told 2 1/2 hours, then 3 and then 5.) I left that hospital and went to another one. She was seen rather quickly there, but it was almost midnight by the time she saw a doctor. When they examined her the swelling was gone. This is what I was afraid would happen, which is part of the reason why I was in a hurry to get her seen. They gave her Toradol, which took her pain down from a 10 to a 7, and then sent her home. Also, I recently realized that the rheumatologist gave her a cortisone shot the day before the bloodwork was done. I was wondering if that would cause the test for inflamation to come up normal. It seems to make sense to me that it would. Has anyone ever seen anything that swells this way? I notice different parts of her arms and legs being swollen at different times, but this was definitely the worst one yet.
    Mystery Pain 10 Replies Flag this Response
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