Discussions By Condition: I cannot get a diagnosis.

Please help me get a diagnosis ! Spine/bone pain

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: genesmasher
  • December 28, 2009
  • 04:28 PM

40 year old male, 5'9", 175 lb. I am in a lot of pain, especially at night/ in the morning – mostly lumbar and thoracic spine (radiates around as well), also somewhat less – neck, sternum, ankles, other joints. All joints “click”. Lately, in the morning my hands are numb and tingling, but that usually goes away in a few minutes after waking up and moving around. I also have this constant high-pitched ringing in the left ear (only, right is fine).

All these symptoms began about four months ago. My prior medical history includes UTI followed by chronic prostatitis in 2006-07. Took several long courses of levaquin/cipro for that, finally got rid of it, for the most part. After taking the last course of antibiotics (Feb 2008) started having joint pain - mild at first, but slowly progressing - knees, elbows, wrists. General feeling of fatigue, inflammation (no fever though). Caused me to stop exercising (soccer), which I did for 30+ years with no prior issues. Went to see two rheumatologists over the last 18 months, did all sorts of tests - bloodwork for lupus, RA, inflammation, infection, PSA, blood culture - all negative or normal. Did X-ray and MRI of SI joints for spondyloarthritis - negative. HLAB27 - negative. Full body nuclear bone scan - normal. Of all the tests, my liver enzymes are elevated a little (ALT 88 - doctors say it may be my norm), lymphs (50%, but WBC 7000), slight vit-D deficiency (10-20% below norm) and mild degenerative disc disease at L4/L5 (apparently 90 % of people have). Last prescription was sulfasalazine, which is when I developed ringing in the ear problem. Stopped the med, but it didn't go away (three months now), so it may not be related to the drug. Seeing and ENT for this next week. Before sulfa, tried Elavil (helps to sleep, but doesnt take away the pain), Celebrex (minimal effect).

Basically, after doing all this testing, nobody seems to have a clue what is wrong with me. Suggestions were - fibromyalgia (it is the bones/joints that hurt, not muscles !), reactive arthritis (hense sulfa) - ruled out with MRI of SI's. This really makes me miserable - cant sleep well, and during the day feel pain as well, although a little less... :( I really don't want to just take pain killers all the time - they don't work 100% anyway - I want a diagnosis. Any ideas?.. Any specific imaging or other tests that might clarify this ?

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  • 40 year old male, 5'9", 175 lb. I am in a lot of pain, especially at night/ in the morning – mostly lumbar and thoracic spine (radiates around as well), also somewhat less – neck, sternum, ankles, other joints. All joints “click”. Lately, in the morning my hands are numb and tingling, but that usually goes away in a few minutes after waking up and moving around. I also have this constant high-pitched ringing in the left ear (only, right is fine).All these symptoms began about four months ago. My prior medical history includes UTI followed by chronic prostatitis in 2006-07. Took several long courses of levaquin/cipro for that, finally got rid of it, for the most part. After taking the last course of antibiotics (Feb 2008) started having joint pain - mild at first, but slowly progressing - knees, elbows, wrists. General feeling of fatigue, inflammation (no fever though). Caused me to stop exercising (soccer), which I did for 30+ years with no prior issues. Went to see two rheumatologists over the last 18 months, did all sorts of tests - bloodwork for lupus, RA, inflammation, infection, PSA, blood culture - all negative or normal. Did X-ray and MRI of SI joints for spondyloarthritis - negative. HLAB27 - negative. Full body nuclear bone scan - normal. Of all the tests, my liver enzymes are elevated a little (ALT 88 - doctors say it may be my norm), lymphs (50%, but WBC 7000), slight vit-D deficiency (10-20% below norm) and mild degenerative disc disease at L4/L5 (apparently 90 % of people have). Last prescription was sulfasalazine, which is when I developed ringing in the ear problem. Stopped the med, but it didn't go away (three months now), so it may not be related to the drug. Seeing and ENT for this next week. Before sulfa, tried Elavil (helps to sleep, but doesnt take away the pain), Celebrex (minimal effect).Basically, after doing all this testing, nobody seems to have a clue what is wrong with me. Suggestions were - fibromyalgia (it is the bones/joints that hurt, not muscles !), reactive arthritis (hense sulfa) - ruled out with MRI of SI's. This really makes me miserable - cant sleep well, and during the day feel pain as well, although a little less... :( I really don't want to just take pain killers all the time - they don't work 100% anyway - I want a diagnosis. Any ideas?.. Any specific imaging or other tests that might clarify this ? Thanks for this useful post. Here is some additional information about the "genetics" of this condition that was written by our Genetic Counselor and other genetic professionals: http://www.accessdna.com/condition/Camurati_Engelmann_Disease/71. Thanks, AccessDNA
    hayatee 2 Replies
    • December 29, 2009
    • 08:34 AM
    • 0
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  • GENESMASHER-As for all the leg pain, sounds like you are reacting to the Levaquin. It is well known for causing quite bad leg pain. What did the ENT say about the ringing? ENT should have gotten you an MRI to see if you have tumor in there. How did that appt. turn out? I have the same thing - bones hurt deeply ALL the time. Nothing relieves it. If you find out what you are suffering from, please tell me!40 year old male, 5'9", 175 lb. I am in a lot of pain, especially at night/ in the morning – mostly lumbar and thoracic spine (radiates around as well), also somewhat less – neck, sternum, ankles, other joints. All joints “click”. Lately, in the morning my hands are numb and tingling, but that usually goes away in a few minutes after waking up and moving around. I also have this constant high-pitched ringing in the left ear (only, right is fine).All these symptoms began about four months ago. My prior medical history includes UTI followed by chronic prostatitis in 2006-07. Took several long courses of levaquin/cipro for that, finally got rid of it, for the most part. After taking the last course of antibiotics (Feb 2008) started having joint pain - mild at first, but slowly progressing - knees, elbows, wrists. General feeling of fatigue, inflammation (no fever though). Caused me to stop exercising (soccer), which I did for 30+ years with no prior issues. Went to see two rheumatologists over the last 18 months, did all sorts of tests - bloodwork for lupus, RA, inflammation, infection, PSA, blood culture - all negative or normal. Did X-ray and MRI of SI joints for spondyloarthritis - negative. HLAB27 - negative. Full body nuclear bone scan - normal. Of all the tests, my liver enzymes are elevated a little (ALT 88 - doctors say it may be my norm), lymphs (50%, but WBC 7000), slight vit-D deficiency (10-20% below norm) and mild degenerative disc disease at L4/L5 (apparently 90 % of people have). Last prescription was sulfasalazine, which is when I developed ringing in the ear problem. Stopped the med, but it didn't go away (three months now), so it may not be related to the drug. Seeing and ENT for this next week. Before sulfa, tried Elavil (helps to sleep, but doesnt take away the pain), Celebrex (minimal effect).Basically, after doing all this testing, nobody seems to have a clue what is wrong with me. Suggestions were - fibromyalgia (it is the bones/joints that hurt, not muscles !), reactive arthritis (hense sulfa) - ruled out with MRI of SI's. This really makes me miserable - cant sleep well, and during the day feel pain as well, although a little less... :( I really don't want to just take pain killers all the time - they don't work 100% anyway - I want a diagnosis. Any ideas?.. Any specific imaging or other tests that might clarify this ?
    Anonymous 42789 Replies
    • December 29, 2009
    • 07:25 PM
    • 0
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  • 40 year old male, 5'9", 175 lb. I am in a lot of pain, especially at night/ in the morning – mostly lumbar and thoracic spine (radiates around as well), also somewhat less – neck, sternum, ankles, other joints. All joints “click”. Lately, in the morning my hands are numb and tingling, but that usually goes away in a few minutes after waking up and moving around. I also have this constant high-pitched ringing in the left ear (only, right is fine).All these symptoms began about four months ago. My prior medical history includes UTI followed by chronic prostatitis in 2006-07. Took several long courses of levaquin/cipro for that, finally got rid of it, for the most part. After taking the last course of antibiotics (Feb 2008) started having joint pain - mild at first, but slowly progressing - knees, elbows, wrists. General feeling of fatigue, inflammation (no fever though). Caused me to stop exercising (soccer), which I did for 30+ years with no prior issues. Went to see two rheumatologists over the last 18 months, did all sorts of tests - bloodwork for lupus, RA, inflammation, infection, PSA, blood culture - all negative or normal. Did X-ray and MRI of SI joints for spondyloarthritis - negative. HLAB27 - negative. Full body nuclear bone scan - normal. Of all the tests, my liver enzymes are elevated a little (ALT 88 - doctors say it may be my norm), lymphs (50%, but WBC 7000), slight vit-D deficiency (10-20% below norm) and mild degenerative disc disease at L4/L5 (apparently 90 % of people have). Last prescription was sulfasalazine, which is when I developed ringing in the ear problem. Stopped the med, but it didn't go away (three months now), so it may not be related to the drug. Seeing and ENT for this next week. Before sulfa, tried Elavil (helps to sleep, but doesnt take away the pain), Celebrex (minimal effect).Basically, after doing all this testing, nobody seems to have a clue what is wrong with me. Suggestions were - fibromyalgia (it is the bones/joints that hurt, not muscles !), reactive arthritis (hense sulfa) - ruled out with MRI of SI's. This really makes me miserable - cant sleep well, and during the day feel pain as well, although a little less... :( I really don't want to just take pain killers all the time - they don't work 100% anyway - I want a diagnosis. Any ideas?.. Any specific imaging or other tests that might clarify this ? Have you been tested for Lyme disease? sometime the test will be neg, as the bacteria hides in the blood, so you may need more than 1 test just a suggestion
    Anonymous 42789 Replies
    • December 29, 2009
    • 08:59 PM
    • 0
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  • Have you been tested for Lyme disease? sometime the test will be neg, as the bacteria hides in the blood, so you may need more than 1 test just a suggestionYes, I have, lyme negative. I am aware of Levaquin side effects, but I stopped taking it March 2008 - should have recovered by now.
    genesmasher 1 Replies
    • December 30, 2009
    • 02:00 AM
    • 0
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  • 40 year old male, 5'9", 175 lb. I am in a lot of pain, especially at night/ in the morning – mostly lumbar and thoracic spine (radiates around as well), also somewhat less – neck, sternum, ankles, other joints. All joints “click”. Lately, in the morning my hands are numb and tingling, but that usually goes away in a few minutes after waking up and moving around. I also have this constant high-pitched ringing in the left ear (only, right is fine).All these symptoms began about four months ago. My prior medical history includes UTI followed by chronic prostatitis in 2006-07. Took several long courses of levaquin/cipro for that, finally got rid of it, for the most part. After taking the last course of antibiotics (Feb 2008) started having joint pain - mild at first, but slowly progressing - knees, elbows, wrists. General feeling of fatigue, inflammation (no fever though). Caused me to stop exercising (soccer), which I did for 30+ years with no prior issues. Went to see two rheumatologists over the last 18 months, did all sorts of tests - bloodwork for lupus, RA, inflammation, infection, PSA, blood culture - all negative or normal. Did X-ray and MRI of SI joints for spondyloarthritis - negative. HLAB27 - negative. Full body nuclear bone scan - normal. Of all the tests, my liver enzymes are elevated a little (ALT 88 - doctors say it may be my norm), lymphs (50%, but WBC 7000), slight vit-D deficiency (10-20% below norm) and mild degenerative disc disease at L4/L5 (apparently 90 % of people have). Last prescription was sulfasalazine, which is when I developed ringing in the ear problem. Stopped the med, but it didn't go away (three months now), so it may not be related to the drug. Seeing and ENT for this next week. Before sulfa, tried Elavil (helps to sleep, but doesnt take away the pain), Celebrex (minimal effect).Basically, after doing all this testing, nobody seems to have a clue what is wrong with me. Suggestions were - fibromyalgia (it is the bones/joints that hurt, not muscles !), reactive arthritis (hense sulfa) - ruled out with MRI of SI's. This really makes me miserable - cant sleep well, and during the day feel pain as well, although a little less... :( I really don't want to just take pain killers all the time - they don't work 100% anyway - I want a diagnosis. Any ideas?.. Any specific imaging or other tests that might clarify this ? Levaquin is awful studies show that it detiriorates tendons check with lawyer class action suit against manufacturer
    Anonymous 42789 Replies
    • December 30, 2009
    • 06:06 AM
    • 0
    Flag this Response
  • 40 year old male, 5'9", 175 lb. I am in a lot of pain, especially at night/ in the morning – mostly lumbar and thoracic spine (radiates around as well), also somewhat less – neck, sternum, ankles, other joints. All joints “click”. Lately, in the morning my hands are numb and tingling, but that usually goes away in a few minutes after waking up and moving around. I also have this constant high-pitched ringing in the left ear (only, right is fine).All these symptoms began about four months ago. My prior medical history includes UTI followed by chronic prostatitis in 2006-07. Took several long courses of levaquin/cipro for that, finally got rid of it, for the most part. After taking the last course of antibiotics (Feb 2008) started having joint pain - mild at first, but slowly progressing - knees, elbows, wrists. General feeling of fatigue, inflammation (no fever though). Caused me to stop exercising (soccer), which I did for 30+ years with no prior issues. Went to see two rheumatologists over the last 18 months, did all sorts of tests - bloodwork for lupus, RA, inflammation, infection, PSA, blood culture - all negative or normal. Did X-ray and MRI of SI joints for spondyloarthritis - negative. HLAB27 - negative. Full body nuclear bone scan - normal. Of all the tests, my liver enzymes are elevated a little (ALT 88 - doctors say it may be my norm), lymphs (50%, but WBC 7000), slight vit-D deficiency (10-20% below norm) and mild degenerative disc disease at L4/L5 (apparently 90 % of people have). Last prescription was sulfasalazine, which is when I developed ringing in the ear problem. Stopped the med, but it didn't go away (three months now), so it may not be related to the drug. Seeing and ENT for this next week. Before sulfa, tried Elavil (helps to sleep, but doesnt take away the pain), Celebrex (minimal effect).Basically, after doing all this testing, nobody seems to have a clue what is wrong with me. Suggestions were - fibromyalgia (it is the bones/joints that hurt, not muscles !), reactive arthritis (hense sulfa) - ruled out with MRI of SI's. This really makes me miserable - cant sleep well, and during the day feel pain as well, although a little less... :( I really don't want to just take pain killers all the time - they don't work 100% anyway - I want a diagnosis. Any ideas?.. Any specific imaging or other tests that might clarify this ? This sounds exactly like what I experienced two years ago. I'm a healthy, (5'1" 118 lbs) active female in my 40s. After two weeks on Levaquin for a sinus infection, I developed burning in joints -- knees, ankles, wrists, elbows -- symmetrically on both sides of my body. I stopped taking the drug immediately. At the same time I developed weakness in the outer hamstrings (couldn't lift myself off the toilet without grabbing something). Any physical activity exhausted me. No one could diagnose it; a rheumatologist wanted to put me on steroids but I refused. Couldn't ride bike. Couldn't roll over in bed. Couldn't get a chiropractic adjustment without extreme pain the next day. Tests ruled out HLAB27, RA, Lymes, all the usual suspects. Symptoms lasted nearly NINE MONTHS. (I'm one of the lucky ones in that my symptoms have subsided.) Self treated with low- inflammatory diet and massage therapy. The number of cases I've read about and others I know who have had similar reactions suggest a connection w/ Levaquin. Yet, Docs are all in denial about the connection between Levaquin and this turbo-charged autoimmune response -- no research is being done on this because the drug companies control the lab money and won't fund research to implicate a drug that is wreaking havoc on people's bodies.
    bay_bees 1 Replies
    • December 30, 2009
    • 10:03 PM
    • 0
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  • This sounds exactly like what I experienced two years ago. I'm a healthy, (5'1" 118 lbs) active female in my 40s. After two weeks on Levaquin for a sinus infection, I developed burning in joints -- knees, ankles, wrists, elbows -- symmetrically on both sides of my body. I stopped taking the drug immediately. At the same time I developed weakness in the outer hamstrings (couldn't lift myself off the toilet without grabbing something). Any physical activity exhausted me. No one could diagnose it; a rheumatologist wanted to put me on steroids but I refused. Couldn't ride bike. Couldn't roll over in bed. Couldn't get a chiropractic adjustment without extreme pain the next day. Tests ruled out HLAB27, RA, Lymes, all the usual suspects. Symptoms lasted nearly NINE MONTHS. (I'm one of the lucky ones in that my symptoms have subsided.) Self treated with low- inflammatory diet and massage therapy. The number of cases I've read about and others I know who have had similar reactions suggest a connection w/ Levaquin. Yet, Docs are all in denial about the connection between Levaquin and this turbo-charged autoimmune response -- no research is being done on this because the drug companies control the lab money and won't fund research to implicate a drug that is wreaking havoc on people's bodies.It might be Osteogenesis Imperfecta. Make sure your eyes aren't tinted blue which is one of the symptoms. You described other symptoms as well weak bones and a ringing in your ear. One of the symptoms is early hearing loss. Check to make sure your hearing is still doing well every once in a while. If you happen to have loose joints and flat feet then it's extremely likely you have it. If it gets worse, look out for scoliosis, bowed legs and arms, and Kyphosis (the curving of the spine which may cause a hunchback) which has these symptoms: * Difficulty breathing (in severe cases) * Fatigue * Mild back pain * Round back appearance * Tenderness and stiffness in the spineGood luck!
    Anonymous 42789 Replies
    • December 31, 2009
    • 03:36 PM
    • 0
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  • Osteogenesis imperfecta is a condition causing extremely fragile bones. Symptoms include all people with OI have weak bones, which makes them susceptible to fractures. People with OI are usually below average height ( short stature). However, the severity of the disease varies greatly. The classic symptoms include:Blue tint to the whites of their eyes (blue sclera)Multiple bone fracturesEarly hearing loss (deafness)Because type I collagen is also found in ligaments, people with OI often have loose joints (hypermobility) and flat feet. Some types of OI also lead to the development of poor teeth.Symptoms of more severe forms of OI may include:Bowed legs and armsKyphosisScoliosis (S-curve spine)Good luck!
    RaphCohen 1 Replies
    • December 31, 2009
    • 04:00 PM
    • 0
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  • 40 year old male, 5'9", 175 lb. I am in a lot of pain, especially at night/ in the morning – mostly lumbar and thoracic spine (radiates around as well), also somewhat less – neck, sternum, ankles, other joints. All joints “click”. Lately, in the morning my hands are numb and tingling, but that usually goes away in a few minutes after waking up and moving around. I also have this constant high-pitched ringing in the left ear (only, right is fine).All these symptoms began about four months ago. My prior medical history includes UTI followed by chronic prostatitis in 2006-07. Took several long courses of levaquin/cipro for that, finally got rid of it, for the most part. After taking the last course of antibiotics (Feb 2008) started having joint pain - mild at first, but slowly progressing - knees, elbows, wrists. General feeling of fatigue, inflammation (no fever though). Caused me to stop exercising (soccer), which I did for 30+ years with no prior issues. Went to see two rheumatologists over the last 18 months, did all sorts of tests - bloodwork for lupus, RA, inflammation, infection, PSA, blood culture - all negative or normal. Did X-ray and MRI of SI joints for spondyloarthritis - negative. HLAB27 - negative. Full body nuclear bone scan - normal. Of all the tests, my liver enzymes are elevated a little (ALT 88 - doctors say it may be my norm), lymphs (50%, but WBC 7000), slight vit-D deficiency (10-20% below norm) and mild degenerative disc disease at L4/L5 (apparently 90 % of people have). Last prescription was sulfasalazine, which is when I developed ringing in the ear problem. Stopped the med, but it didn't go away (three months now), so it may not be related to the drug. Seeing and ENT for this next week. Before sulfa, tried Elavil (helps to sleep, but doesnt take away the pain), Celebrex (minimal effect).Basically, after doing all this testing, nobody seems to have a clue what is wrong with me. Suggestions were - fibromyalgia (it is the bones/joints that hurt, not muscles !), reactive arthritis (hense sulfa) - ruled out with MRI of SI's. This really makes me miserable - cant sleep well, and during the day feel pain as well, although a little less... :( I really don't want to just take pain killers all the time - they don't work 100% anyway - I want a diagnosis. Any ideas?.. Any specific imaging or other tests that might clarify this ? Hi. I know this is a few years after your post...I pray you already have your answer and are no longer in pain. ....but if you haven't then might I suggest Lyme disease. I know you said you were tested for Lyme by your doc but the testing that you get from any doctor anywhere is not sensitive enough...those tests miss 80 out of 200 cases! Go to igenex.com it's a lab in California, they are the only lab that does testing for Lyme that's sensitive to pick up the antibodies. Even then, testing could come back negative because of what antibody testing looks for, antibodies, and if your immune system is weak then it won't make the antibodies needed for testing. Go to ILADS.org they are doctors and researchers who do nothing but study and research tick borne diseases. Don't believe what your doctors tell you..they do t know about Lyme, even if they think they do, because of the lies they have been told and taught by the IDSA. I do hope you are feeling better....but if not, please keep an open mind and at least look into what I'm saying.God bless and good luck!!
    conniegirl527 1 Replies Flag this Response
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