Discussions By Condition: I cannot get a diagnosis.

Three Years Of Sore Throat, Fatigue, Dizziness, Burning Feet, Etc.

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: Noro Nuro
  • March 22, 2008
  • 02:34 PM

Hello,

I hope somebody in this forum has at least an idea what is going on with me.

For the last three years I have had a persistent sore throat, fatigue, dizziness, and burning feet. The sore throat and the fatigue have been there almost every single day since June 2005. The dizziness when away for a few months last year, now is back. The burning feet appear in 2006 together with a generalized muscle twitching. Symtpoms are sometimes worst in cycles of a few weeks, but better or worse are always there. The dizziness is of strange kind -it is more like having difficulty to concentrate. If the sore throat gets worse, everything else gets worse, including the burning sensation on my feet and sometimes on my hands. Sometimes my neck bothers me. However, doctors have never felt enlarged lymph nodes. During all this time I have also developed folliculitis in my chest and acne in my face that does not go away with antibiotics. My scalp is always oily.

The only time I experienced a combination of sore throat, fatigue, and this specific strange type of dizziness was in October 2004. Exactly three months after protected vaginal insertive intercourse with a sex worker in South America (July 2004). The symptoms lasted 2-4 weeks. Before this episode, and right after the sexual encounter, I experienced a generalized itching that lasted a couple of weeks. It was treated like scabies and went away. A month later (August/September 2004) I was diagnosed with molluscum contagiousium. It was treated and cured by December 2004. Between December 2004 and May 2005 I did noit have any symptoms.

Labs have been always normal (last were in December 2007). Sometimes I have slightly elevated ALT (range 40-50). I have been tested for a number of infectious diseases. Results have always been negative, tests include: HIV1/2, HBV, HCV, EBV, HHV1,2,6, CMV. Also TBC, Lyme, Brucellosis, Strep, Malaria. I have also been tested for a number of autoimmune diseases. All negative. Also for diabetes, and the results were also negative.

Whatever it is, it does not seem to be bacterial (I took antibiotics -Vibramicin- for three months and I did not experience not even the slightest change in my symptoms. I only experienced some improvement in the acne). It is not allergic either (I have tried different types of antiallergics and I have not experienced any change in my symptoms either). I have been treated for reflux with no changes in my sore throat.

Two endoscopies -the last one in July 2005- were normal. A colonoscopy in April 2007 showed microscopic lymphocitic colitis, which I understand could be related to some sort of immune or autoimmune problems. Between January 2007 and July 2007 I experienced some irritable bowel symptoms -but never persistent diarrhea. Thorax/Abdomen CAT scans in 2005 and 2006 do not show any abnormalities. I cannot recall having feaver, but at the beginning of these symptoms (2005) and also lately I sweat easily.

Any ideas? Please help me. This is starting to affect my work.

Best,
:confused: :( :mad:

PS. I have seen 12 doctors already. They do not know what I have.

Reply Flag this Discussion

13 Replies:

  • I have alot of your same symtoms and have been going to doctors for about 2 years now. last week I found out that I am very allergic to Wheat, RYE, Milk, Barley. You may want to get some RAST tests done for IGE allergys and request to be tested for IGG allergys also, this type is called "hidden allergys or delayed allergys" meaning it can take up to 48 hours for you to show symptoms after eating something. It could also be Celiac Disease. Good luck! ~Stacky
    stacky 52 Replies Flag this Response
  • Maybe check into Ulcerative Colitis.... or celiacs PS. I have seen 12 doctors already. They do not know what I have.You might also ask to be screened for porphyria.
    TaylorDeelwithit 382 Replies Flag this Response
  • Thanks for the answers. According to the doctors I saw, the three-month course of antibiotics (Vibramicin) rules out Lyme and infection by similar organisms. As I indicated in my post, I did not experience any improvement in my symptoms during or after the treatment with these antibiotics. I have been tested for celiac disease but as far as I know I have not been tested for the other allergies you mention. I will certainly do that as soon as possible. Strange think is that neither antiallergics nor changes of environment and/or diet have had any impact on my symptoms. The last doctor I saw suggested what he referred to me as "Chronic Mononucleosis" caused by EBV, HHV-6, or HHV-7. I have tested negative for the first two (both IGg and IGm) and it turns out I have never been exposed to these viruses. I forgot to mention I have been also tested for HTLV1 and 2. Also with negative results. ???
    Noro Nuro 5 Replies Flag this Response
  • i dont have a clue right now but IF the fatigue gets much worse and is post excertional and you develop more symptoms eg sleeping problems, headaches etc.. then check into chronic fatigue syndrome. At the moment your symptoms thou are not bad enough for it to be said to be that.. but it can cause those symptoms.
    taniaaust1 2267 Replies Flag this Response
  • I appreciate the answers.-The three months of Vibramicin rule out Lyme and similar non-viral infections. My symptoms did not improve during or after the Vibramicin.-I was tested for Celiac disease, though not for all the other allergies you mention. However, changes in environment and/or diet did not impacted in my symptoms either. I will get tested for the other allergies to see.-Last doctor I saw suggested a chronic EBV, HHV6 or HHV7 infection. I got tested for the first two and it turns out I have never been infected with these viruses (IGg and IGm were negative). I still need to get tested for the third one. However, other doctors think this is an unlikely cause of my symptoms.
    Anonymous 42789 Replies Flag this Response
  • I appreciate the answers. -The three months of Vibramicin rule out Lyme and similar non-viral infections. My symptoms did not improve during or after the Vibramicin. -I was tested for Celiac disease, though not for all the other allergies you mention. However, changes in environment and/or diet did not impacted in my symptoms either. I will get tested for the other allergies to see. -Last doctor I saw suggested a chronic EBV, HHV6 or HHV7 infection. I got tested for the first two and it turns out I have never been infected with these viruses (IGg and IGm were negative). I still need to get tested for the third one. However, other doctors think this is an unlikely cause of my symptoms. umm i find that last paragraph of yours very interesting as Ive done a lot of research on HHV6 in the past, due to the link with CFS and HHV6 and from my research.. I found out basically everyones been infected by it.. if im remembering correctly something like before the age of 3?? Anyway.. it was by early in life. (thou my following comments do relate a lot to CFS and HHV6 a lot.. it may be quite relevant to you, due to what you've just said Im wondering if your doctor didnt test you the uncommon type of HHV6! and that is why he's found you negative for any previous HHV6 infection at all??? HHV6 in the field of medicine, is only a fairly recent new discovery and doctors are still learning about it, many doctors too dont realise there are two subtypes of it! and the only studies i know that are being done right now.. are on the more common subtype, the less common subtype seems to be being ignored) What gets interesting with HHV6 thou, is that there are TWO DIFFERENT SUBTYPES of it, with one type it is the common HHV6 type and something like 95%?? (this figure may be a little lower) of the population has been previously affected by that type. Now with the other type (the uncommon type).. only something like 5 percent of people are affected by it (and in CFS.. it is the uncommon type of HHV6 which interestingly over half of CFSers test positive too). Being affected at an early point of our lives by one of the two types of HHV6, stops us from getting infected by the other type, (the antibodies of one, must make one usually immune to the other type). (Only one percent of the population tests positive to past exposure to both). Im thinking right now due to you saying you tested negative to past exposure to HHV6 (when 100% of the population has been said to have contact with HHV6.. so your results just dont sound right!).. so im supposing that your doctor didnt test you for the uncommon type.. HHV6 A! (he probably just tested you for HHV6-B cause it dont make no sense to me at all that you didnt test any previous exposure to HHV6 at all which you should of done)........................ ummmm okay.. i've just decided i'll probably do a search to back up to you what im saying here as it was a couple of years back i researched HHV6 and post links later on.. ..as I believe you need to make sure your doctor tested for BOTH HHV6 subtypes as you SHOULD certainly test postiive to past exposure to ONE of them. It makes no sense to me at all otherwise. if he tries to tell you he HAS tested you for both (which i dont believe is so due to your result).. ask him then why you test negative to past exposure of both HHV6-A and HHV6-B when 100% of the population is said to have been exposure to at least one of these.. in the very early years of life! (if he's still insisting you test negative to both on past exposure.. ask to see the test results).
    taniaaust1 2267 Replies Flag this Response
  • I absolutely get what you say. I do not know whether I was tested for HHV6-A or HHV6-B. I do know I was tested for HHV6 by PCR and by EIA (Igg+Igm)... the results for the three tests were negative... I probably should go back to that doctor. I have to recognize I still worry about HIV (inspite of the persistent HIV negative tests). Doctors keep telling me EIA HIV 1/2 tests are very sensitive and specific but the recent combination of peripheral neuropathies and seborrheic dermatitis worries me. Thanks a lot for the idea on HHV6... I will certainly follow the line of inquiry...
    Noro Nuro 5 Replies Flag this Response
  • Blaze, Thanks a lot for your comment. If that is indeed the case, then I should probably get tested for all the infections you mentioned. Do you have a complete list of the tests I should have? Thanks,
    Noro Nuro 5 Replies Flag this Response
  • Hi,Sorry about your health problems, but I have question, in addition to the symptoms you mentioned above, do you also have burning ears and weird sensations as if someone is pricking you with a stick pin? Just wondering.
    icbt07 1 Replies Flag this Response
  • No burning ears. Usually I feel burning and pain in my feet (it is almost permanent -especially when resting). Occasionally I feel like pricking and stabbing, very intense, also in my feet, for a few seconds. Some days this is simple unbearable. Others, it goes away.
    Noro Nuro 5 Replies Flag this Response
  • I absolutely get what you say. I do not know whether I was tested for HHV6-A or HHV6-B. I do know I was tested for HHV6 by PCR and by EIA (Igg+Igm)... the results for the three tests were negative... I probably should go back to that doctor. I have to recognize I still worry about HIV (inspite of the persistent HIV negative tests). Doctors keep telling me EIA HIV 1/2 tests are very sensitive and specific but the recent combination of peripheral neuropathies and seborrheic dermatitis worries me. Thanks a lot for the idea on HHV6... I will certainly follow the line of inquiry... If you need an AIDS test, you should have another one.. more than 12 weeks after the sexual encounter which caused you to go and get the first test. (well that's what my doctor told me anyway, i was told i needed a second test at the 12 week point ). If it's clear after 12 weeks.. you should be fine........... http://en.wikipedia.org/wiki/HHV6 (backs up what i was reading about HHV6 elsewhere in the past).
    taniaaust1 2267 Replies Flag this Response
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  • Thanks, I was tested by HIV 1/2 III Generation Recombinant (Roche Diagnostics) at 3, 12, 13, 14, 15, 16, 17 months... etc and at 30 months (twice) after possible exposure. All negative. I know... I was obsessed with this... Thanks for the HHV6 link. I went to see a doctor today. He wants me to have a CAT scan of my head... he what to check if I have a pituitary tumor... I do not know what to think. I am very worried now. :(
    Noro Nuro 5 Replies Flag this Response
  • I know this is an old post but my wife has had these same symptoms for the last 6 months and the doctors dont have a clue. I was wondering if you had found a resolution to your problem.
    Anonymous 42789 Replies Flag this Response
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