Discussions By Condition: I cannot get a diagnosis.

Here's a stumper...

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • October 4, 2008
  • 09:21 PM

About two months ago I hurt my back and this resulted in a bulging L1 disc. I did physical therapy and took Nsaids and pain pill for 4 weeks before visiting an Ortho. surgeon who put me on Relafen and Medrol dose pack (oral steroid) to reduce inflammation around the disc. I was feeling pretty good for about two days and around the third day into taking this medication I started to have chest pains and went to the urgent care.

Upon arriving at the urgent care they did an EKG and came back with an abnormal result. I was then sent to the hospital (very scary) and admitted to the ER where they did further tests and a cardiologist figured out they I had Pericarditis (which is inflammation of the pericardium of the heart) and can be caused by a virus or autoimmune disease. This was a relief because it meant that it was not a serious problem with my heart and my Pericarditis ended up going away on its own with just taking Advil to reduce inflammation. I stayed overnight in the hospital and continued to take Nsaids and the medrol dose pack. I felt OK except I was extremely fatigued and my lower and upper back hurt. About a day later I started to notice stiffness in my fingers and about a day later I had bad joint pain and stiffness everywhere. I saw my primary doc who told me all my autoimmune tests that were done at the hospital were negative (even my sed rate was normal) and since I had no swelling in my joints that I probably had some kind of virus.

A few days later I ended up having such severe joint pain and burning feeling under my skin that I went back to the hospital. They ran even more tests on me to rule out Lymes, Mono, and autoimmune and everything again came back normal. So they gave me some pain meds and sent me on my way.

The next day I went back to the ER because I was really suffering with the joint pain/burning. My primary Doc told them to admit me for a couple of days and they sent a Rheumatologist to see me. He ran some even more advanced test on me which took about a week to get back and they were again all normal. He did take me of the oral steroids and I started to feel a little better a few days later, although that was 3 weeks ago and I still have the joint pain and burning that comes and goes, but is not to severe.

I have seen 3 Rheumatologist in the last month who have all stated that from my tests and the fact that I have no swelling at all I do not have an auto-immune disease and that I have some kind of nasty virus.

I did also see an Infectious Disease doctor who stated I probably have the Coxsackie virus because it came back positive on the test results, but then a rheumatoligist told me that could have been positive only because I had it sometime in my life.

It has been 4 weeks and I am still not well. It is just hard to believe this can all be due to a virus. I was also in perfect health before this happened and had to even drop out of the Chicago Marathon because of all of this. Any ideas???

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8 Replies:

  • This is really a hit or miss. If you were in perfect health before you hurt your back, and now just doing normal daily activies is a challenge, it might be nerve damage. The bulging disc in the upper lumbar region would compress the surrounding nerves. It could produce a come and go effect if the swelling is helped somewhat by the meds, lessening the pressure on the nerves. Then if that swelling happens again, it would recompress the nerves. I've found that damaged nerves cause that burning feeling in the joints (atleast in my case). It might help to see a neurologist and have a nerve stimulus test done. This is really the only thing I can think of. Yeah, this definitely is a stumper.
    LadyLeprechan 24 Replies
    • October 5, 2008
    • 00:27 AM
    • 0
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  • This is really a hit or miss. If you were in perfect health before you hurt your back, and now just doing normal daily activies is a challenge, it might be nerve damage. The bulging disc in the upper lumbar region would compress the surrounding nerves. It could produce a come and go effect if the swelling is helped somewhat by the meds, lessening the pressure on the nerves. Then if that swelling happens again, it would recompress the nerves. I've found that damaged nerves cause that burning feeling in the joints (atleast in my case). It might help to see a neurologist and have a nerve stimulus test done. This is really the only thing I can think of. Yeah, this definitely is a stumper. Thanks for the reply. I appreciate any and all input. That had occured to me as well, except the MRI I already had done on my lower back showed that the disc was not compressing any nerves. I also have not had any swelling at all. It is all very strange and frusturating to not know.
    Anonymous 42789 Replies
    • October 5, 2008
    • 00:38 AM
    • 0
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  • It's very upsetting when you have joint pain w/o inflamation or anything measurable that shows up on a test. I have been going through the same problem. The best answer my Rheumo doc could come up with Fibro but another doctor said that was a cop out answer and then didn't offer anything better. I am so desperate to find answer next week I am being tested for STD's. I heard syphilis was the great imitator along with HIV, Lupus, hypothyroidism and Lyme. I am not a promiscuous person but at this point I am ruling out all possibilities one at time. I am also being checked for Celiac disease since I do have a lower than normal B12 - but the doctor said I don't have anemia. If none of those tests turn up anything then I am going to keep on insisting on more tests. Five months ago I was a fine healthy athletic person and now I am missing work, missing out on my workouts and not able to enjoy my life or family. Good luck with yourself. Also get copies of your blood work and tests. There is a wealth of information on the internet to help you understand them. I didn't know I had low B12 until I saw one of my tests.
    CANDERSON 18 Replies
    • October 5, 2008
    • 03:42 AM
    • 0
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  • It's very upsetting when you have joint pain w/o inflamation or anything measurable that shows up on a test. I have been going through the same problem. The best answer my Rheumo doc could come up with Fibro but another doctor said that was a cop out answer and then didn't offer anything better. I am so desperate to find answer next week I am being tested for STD's. I heard syphilis was the great imitator along with HIV, Lupus, hypothyroidism and Lyme. I am not a promiscuous person but at this point I am ruling out all possibilities one at time. I am also being checked for Celiac disease since I do have a lower than normal B12 - but the doctor said I don't have anemia. If none of those tests turn up anything then I am going to keep on insisting on more tests. Five months ago I was a fine healthy athletic person and now I am missing work, missing out on my workouts and not able to enjoy my life or family. Good luck with yourself. Also get copies of your blood work and tests. There is a wealth of information on the internet to help you understand them. I didn't know I had low B12 until I saw one of my tests. Hi, Thanks for the reply. I know what you are going through. I have been tested for all the things you mentioned and all negative. They just keep telling me it is a virus that will go away, which is so hard to believe. I did get a copy of all my bloodwork and the only thing that showed up was a slightly high white cell count when I first had the Pericarditis, which was normal on subsequent tests and then a positive result for Coxsackie virus. I have also missed a lot of work (5 weeks) and between my back injury and this happening a month ago I have been moping around my house for 1.5 months, which is not me. Before I came down with all this I use to run 30 miles per week, weight lift, bike, and swim. I was very active and now it takes a lot of energy just to walk my dog. At this point I don't even care what I have, I just want to know what it is so it can be treated properly and I can get on with my life. I'm sure you probably feel the same.
    Anonymous 42789 Replies
    • October 5, 2008
    • 04:07 PM
    • 0
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  • I noticed you didn't mention what kind of test for Lyme you had. The cheap one more often then not will show normal, but when the results come back from the western blot test they are positive. Another thing with lyme is it doesn't show up on tests sometimes for several weeks after the symptoms start! I work in a walk in clinic and I see many patients with Lyme that show an equally amount of different symptoms. There is an excellent doctor's website that has some information on Lyme that may be interesting. The site is www.drshevin.com. The man is my Dr and is fabulous. Check it out and I hope you find your answer soon. As for the person with low B12, that is nothing to play with...ask anyone with Pernisious Anemia! My B12 was low normal and I was one sick puppy!!!!. Thanks to my neuro (I had a hemotologist too at the time that missed it) he knew it the first visit! That was 3 years into being sick. SO, don't dismiss the B12 it could be a very bad mistake. Sue Vit
    suevit 24 Replies
    • October 5, 2008
    • 08:03 PM
    • 0
    Flag this Response
  • I noticed you didn't mention what kind of test for Lyme you had. The cheap one more often then not will show normal, but when the results come back from the western blot test they are positive. Another thing with lyme is it doesn't show up on tests sometimes for several weeks after the symptoms start! I work in a walk in clinic and I see many patients with Lyme that show an equally amount of different symptoms. There is an excellent doctor's website that has some information on Lyme that may be interesting. The site is www.drshevin.com. The man is my Dr and is fabulous. Check it out and I hope you find your answer soon. As for the person with low B12, that is nothing to play with...ask anyone with Pernisious Anemia! My B12 was low normal and I was one sick puppy!!!!. Thanks to my neuro (I had a hemotologist too at the time that missed it) he knew it the first visit! That was 3 years into being sick. SO, don't dismiss the B12 it could be a very bad mistake. Sue Vit I had the Lyme igg/igm test (not sure how reliable it is).I will ask my primary doc. I am seeing tomorrow about running further tests. Thanks for your input.
    Anonymous 42789 Replies
    • October 5, 2008
    • 08:09 PM
    • 0
    Flag this Response
  • I noticed you didn't mention what kind of test for Lyme you had. The cheap one more often then not will show normal, but when the results come back from the western blot test they are positive. Another thing with lyme is it doesn't show up on tests sometimes for several weeks after the symptoms start! I work in a walk in clinic and I see many patients with Lyme that show an equally amount of different symptoms. There is an excellent doctor's website that has some information on Lyme that may be interesting. The site is www.drshevin.com. The man is my Dr and is fabulous. Check it out and I hope you find your answer soon. As for the person with low B12, that is nothing to play with...ask anyone with Pernisious Anemia! My B12 was low normal and I was one sick puppy!!!!. Thanks to my neuro (I had a hemotologist too at the time that missed it) he knew it the first visit! That was 3 years into being sick. SO, don't dismiss the B12 it could be a very bad mistake. Sue Vit I had the Lyme igg/igm test(not sure of its reliability). I plan to ask my primary doc. to run some more tests when I see her tomorrow. Thanks for your input.
    Anonymous 42789 Replies
    • October 5, 2008
    • 08:20 PM
    • 0
    Flag this Response
  • I had the Lyme igg/igm test (not sure about the accuracy of it). I plan to ask my primary Doc to run some more tests tomorrow. Thanks for your input.
    Anonymous 42789 Replies
    • October 5, 2008
    • 08:25 PM
    • 0
    Flag this Response
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