Discussions By Condition: I cannot get a diagnosis.

Another Medical Mystery

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Garrison4jc
  • August 29, 2009
  • 02:09 AM

2006: February - March

I awoke one morning with Fever, Diarrhea, Nausea/Vomiting, Fatigue and Cognitive Dysfunction. The physician treated it as an intestinal virus. It took almost three weeks before it "cleared up" (I still had some residual issues for several months after).

This immediately was followed by Pneumonia and then an Upper Respiratory Infection. This placed me off duty for another four weeks.

Even after being cleared back to work, I continued to have minor bowel issues. I would often finish using the restroom, but feel “unfinished”, sometimes for hours afterwards. I also had several “near misses” where my warning time of “needing to use the restroom” was under 30 seconds (this still happens from time to time…frequently enough to be a concern).

I was tested positive for Rheumatoid Factor (also with supporting results from Anti-CCP and ESR). My PCP at the time sent me to a Rheumatologist, but my employer changed insurance carriers before I was able to get in to see him and the new insurance (Kaiser) refused to acknowledge the condition until their own doctors tested me. The test then came up negative and I was told the original must have been a "false positive".

2007: February - April

I experienced the same exact thing as above, only it lasted a month longer and was much stronger.

2008: February - April

I experienced the same exact thing as above. It lasted about the same amount of time and of the same strength as 2007. I did, however, have an extra ER trip due to having auditory and visual hallucinations with my fever at the onset of the illness. My fever spiked at 104.2 while actually inside the ER and it took six hours (and a lot of Ibuprofin/Tylenol) to get it down below 100.

2009: February – April, July - Today

I experienced the same exact thing as in 2007…Except that in July (and now into August) I developed Pneumonia and an Upper Respiratory Infection for a second time this year.

In addition to that, about two weeks ago I started having severe pain in my feet/ankles and hands/wrists. That aching has now spread to almost the entirety of my arms and legs. Tylonel, Ibuprofin, Vicodin, Norco and Ultram do not even take the edge off of the pain. They gave me Dilaudid at the urgent care and that turned the pain into tingling for a few hours and has been my only relief to date. When I contact Kaiser about the medication not working for the pain, it seems like they keep giving me progressively weaker prescription drugs (Vicodin, Ultram then Norco). There is no obvious redness or swelling. There are no rashes.

At my insistence they did do a Rheumatoid Panel and it came up clear (ESR was at 20, which was listed as high, but the physician said it was completely normal).

I was tested for Valley Fever (Coccidioidomycosis) at the onset of the Pneumonia and it came up negative (non active). However, I went into the Physician's office a few days ago and a second test has come up as "Active". My PCP then stated that he was not 100% convinced that this is the diagnosis for my recent illness and they needed to wait for the County Health Department to confirm the findings. I was, however, placed on Diflucan (600mg Per Day for a month). Two different doctors have now said that my pain is probably not related to the Valley Fever, while one said it “definitely” was.

Blood Work

BUN, Creatinine, ALT, AST, Electrolytes, Albumin and TSH have all come back within normal limits. ESR (Sedimentation Rate) is "high" at 20, again something the doctor said was “normal” (range is 0-15 for males). As said above, the Cocci test came back as "Active" on the most recent test with a Titer of 1:8 (my wife actually saw the titer on the doctor’s computer screen and wasn’t’ sure if it was 1:8 or 1:18).

Final Notes

I have a high tolerance for pain, always have, but this is consistently between 7 and 8 on the 1 to 10 scale. I am having severe difficulty with tying my shoes, buttoning my shirts and pants, unscrewing bottle tops, lifting objects, standing up, sitting down, walking and etc. The worst pain/stiffness appears to be during the evening, night and morning (yes, it disturbs my sleep). This has affected my job as well, as I am unable to perform my tasks while experiencing this much pain/stiffness and fatigue. I am only in my late 30’s, but feel as though I am in my late 70’s. I can only walk if assisted by either a person or leaning against an object.

What I need to know is…what could be some of the causes for these illnesses/ailments? Friends and family have offered such things as “Fibromyalgia”, "Crohn's Disease" and/or a rare form of “Rheumatoid Arthritis”. My physician seems to be giving me the shrug off lately, “you will be fine in a couple of days, it is probably just stress” (he has said that a lot lately). However, it this recent pain issue is STILL just as bad as it was two weeks ago and the other illnesses have happened 4 years in a row…so…hmmm?

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  • Update:None of the prescription medications given to me ever did work for the pain/fatigue. However, the pain level did improve to about a four or five for about two days.Then, yesterday evening, the pain shot right back up to an eight or nine and I literally could not get up out of my seat. My legs were both extremely weak and had horrible pain (I swear, it felt like I broke them...it was a really deep/bone kind of pain). About 30 minutes later, my hands and arms started feeling the same way.The pain persisted through the night and I still have it now as I am typing this. I called the doctor and he basically gave me the "we will have to wait until your Arthritis panel blood tests come back" speech. The advice nurse actually told me to go soak in a warm bath and then try taking the Tramadol afterward. I feel like they are saying, "don't worry...this is all in your head and will go away eventually". I mean, even the blood tests keep coming back saying that I am healthy as an Ox! What in the world is going on with my body?! They have mentioned depression...of course I am depressed...BECAUSE of my current condition and inability to return to work.
    Garrison4jc 1 Replies
    • September 2, 2009
    • 06:13 PM
    • 0
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  • I think you do have a parasite, maybe Rickettsia - http://en.wikipedia.org/wiki/Rickettsia - there need not be swelling or rashes, and you don't need to remember insect bites. People are often treated for Rheumatoid Arthritis in vain, when they should have tested for parasites. It requires a much better lab .. You may also want to see my comment at http://forums.wrongdiagnosis.com/showthread.php?t=63296 - not related to your problem, but I explain there how a Chinese Traditional Medicine (TCM) doctor helped us. Print out your above post and take it along.
    Curly Stooge 319 Replies
    • September 3, 2009
    • 07:14 PM
    • 0
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  • After 13 years of "mystery illnesses" three weeks ago figured out from a holistic nutrionist that I was hypersensitive to my silver dental fillings, because of the mercury in them. The mercury did not show up in regular blood/urine tests and not on an MRI either. The mercury ends up in your organs. Go to DAMS.org or type in any symptom on a search engine followed by mercury poisoning. Mercury fillings are now banned in Sweden and Norway and being phased out in other countries. My mom had a friend that had fibromayalgia and symptoms started going away after removal of fillings. You need to go to a holistic dentist to do this safely. I started removal this week. You can find books at your local library on this as well. Some people can metabolize the mercury from them, but many can not. I had many of the symtoms you now have. Good luck!
    Jenn71 1 Replies
    • September 3, 2009
    • 07:57 PM
    • 0
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  • Also see this long post about painful Fifth Disease in adults - http://forums.wrongdiagnosis.com/showthread.php?t=29056 - just to take note. Someone mentions there that acupuncture helped. Not eating meat should help them too as meat makes the body acid. Homeopathic meds for Gout should also help.
    Curly Stooge 319 Replies
    • September 3, 2009
    • 09:12 PM
    • 0
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  • 2006: February - MarchI awoke one morning with Fever, Diarrhea, Nausea/Vomiting, Fatigue and Cognitive Dysfunction. The physician treated it as an intestinal virus. It took almost three weeks before it "cleared up" (I still had some residual issues for several months after).This immediately was followed by Pneumonia and then an Upper Respiratory Infection. This placed me off duty for another four weeks.Even after being cleared back to work, I continued to have minor bowel issues. I would often finish using the restroom, but feel “unfinished”, sometimes for hours afterwards. I also had several “near misses” where my warning time of “needing to use the restroom” was under 30 seconds (this still happens from time to time…frequently enough to be a concern).I was tested positive for Rheumatoid Factor (also with supporting results from Anti-CCP and ESR). My PCP at the time sent me to a Rheumatologist, but my employer changed insurance carriers before I was able to get in to see him and the new insurance (Kaiser) refused to acknowledge the condition until their own doctors tested me. The test then came up negative and I was told the original must have been a "false positive".2007: February - AprilI experienced the same exact thing as above, only it lasted a month longer and was much stronger.2008: February - AprilI experienced the same exact thing as above. It lasted about the same amount of time and of the same strength as 2007. I did, however, have an extra ER trip due to having auditory and visual hallucinations with my fever at the onset of the illness. My fever spiked at 104.2 while actually inside the ER and it took six hours (and a lot of Ibuprofin/Tylenol) to get it down below 100.2009: February – April, July - TodayI experienced the same exact thing as in 2007…Except that in July (and now into August) I developed Pneumonia and an Upper Respiratory Infection for a second time this year.In addition to that, about two weeks ago I started having severe pain in my feet/ankles and hands/wrists. That aching has now spread to almost the entirety of my arms and legs. Tylonel, Ibuprofin, Vicodin, Norco and Ultram do not even take the edge off of the pain. They gave me Dilaudid at the urgent care and that turned the pain into tingling for a few hours and has been my only relief to date. When I contact Kaiser about the medication not working for the pain, it seems like they keep giving me progressively weaker prescription drugs (Vicodin, Ultram then Norco). There is no obvious redness or swelling. There are no rashes.At my insistence they did do a Rheumatoid Panel and it came up clear (ESR was at 20, which was listed as high, but the physician said it was completely normal).I was tested for Valley Fever (Coccidioidomycosis) at the onset of the Pneumonia and it came up negative (non active). However, I went into the Physician's office a few days ago and a second test has come up as "Active". My PCP then stated that he was not 100% convinced that this is the diagnosis for my recent illness and they needed to wait for the County Health Department to confirm the findings. I was, however, placed on Diflucan (600mg Per Day for a month). Two different doctors have now said that my pain is probably not related to the Valley Fever, while one said it “definitely” was.Blood WorkBUN, Creatinine, ALT, AST, Electrolytes, Albumin and TSH have all come back within normal limits. ESR (Sedimentation Rate) is "high" at 20, again something the doctor said was “normal” (range is 0-15 for males). As said above, the Cocci test came back as "Active" on the most recent test with a Titer of 1:8 (my wife actually saw the titer on the doctor’s computer screen and wasn’t’ sure if it was 1:8 or 1:18).Final NotesI have a high tolerance for pain, always have, but this is consistently between 7 and 8 on the 1 to 10 scale. I am having severe difficulty with tying my shoes, buttoning my shirts and pants, unscrewing bottle tops, lifting objects, standing up, sitting down, walking and etc. The worst pain/stiffness appears to be during the evening, night and morning (yes, it disturbs my sleep). This has affected my job as well, as I am unable to perform my tasks while experiencing this much pain/stiffness and fatigue. I am only in my late 30’s, but feel as though I am in my late 70’s. I can only walk if assisted by either a person or leaning against an object.What I need to know is…what could be some of the causes for these illnesses/ailments? Friends and family have offered such things as “Fibromyalgia”, "Crohn's Disease" and/or a rare form of “Rheumatoid Arthritis”. My physician seems to be giving me the shrug off lately, “you will be fine in a couple of days, it is probably just stress” (he has said that a lot lately). However, it this recent pain issue is STILL just as bad as it was two weeks ago and the other illnesses have happened 4 years in a row…so…hmmm?Have them check you for a (AVM) of the brain and spinal cordIt is more then likely not that but from what I have read about AVMs some of the symtoms are similar. and AVMs go undiagnosed a LOT!!!! Good LUCK and best wishes and I hope you get better soon!
    Anonymous 42789 Replies
    • September 4, 2009
    • 01:01 PM
    • 0
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