Discussions By Condition: I cannot get a diagnosis.

GI symptoms, low blood pressure, inner ear damage, weakness, swollen salivary glands

Posted In: I cannot get a diagnosis. 20 Replies
  • Posted By: sunflower007
  • June 23, 2008
  • 08:48 PM

I'm a 21 year old female. I became really sick 2 years ago with really bad dizziness, nausea and weakness. I was extremely sick for 2 1/2 months, then started to get some better. Two years later, I'm still not well. I get "sick spells" where my blood pressure gets really low, I'm very weak, and I have really bad nausea and GI symptoms. The right side of my abdomen is sore, feels swollen, gurgles a lot, and makes me burp constantly and feel like throwing up. The GI symptoms are bad on a regular basis, but worse during a "sick spell". My doctor is assuming it's IBS since no serious inflammation was found. My salivary glands are swollen almost all of the time and my fingernails turn purple a lot. I've had a ton of tests and the only positive ones were the ENG (my right inner ear is functioning 37% less than my left) and elevated liver levels once. I've had the following tests, all of which were negative: upper GI; colonoscopy/endoscopy; abdominal ultrasound; Holter monitor; small bowel x-ray; chest x-ray; blood tests for Lupus, Mono, Epstein-Barr, Celiac, diabetes, Sjogren's; EMG on legs; CT scan of head; MRI of head and inner ear canal. The symptoms are so bad that they keep me from living much of a life. If anyone has anything like this or has any advice, I'd be really grateful.

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20 Replies:

  • Get your doctor to do a full hormone screen, especially of the adrenal hormones - cortisol and adrenaline. Have you been tested for rare blood pressure disorders. The purple nails can suggest bad circulation. Also get tested for anemia - this can cause purple nails.
    Larkenn 20 Replies Flag this Response
  • I get "sick spells" where my blood pressure gets really low, I'm very weak, and I have really bad nausea and GI symptoms. Im with the other poster.. get your hormones checked.. it could be something like Addison's disease causing these "attacks"........... Another condition which can cause your symptoms and low BP during attacks (or low all the time) http://wwcoco.com/cfids/bernesx.html is chronic fatigue syndrome. www.immunesupport.com is a good site for info on this........(CFS can also have abnormal hormone levels).
    taniaaust1 2267 Replies Flag this Response
  • Thanks for the replies. I'll ask my doctor to test my hormone levels next time I'm in. As far as I know, I haven't been tested for rare bp diseases, so I'll also ask about that. I have been tested for anemia, so it's not that. What confused me about the possibility of CFS was that I was under the impression that there was always about the same level of unwellness. The fact that I have the "sick spells" made me think it might be something else. I also forgot to mention that I have a low-grade fever (between 99 and 99.5) a lot of the time.
    sunflower007 7 Replies Flag this Response
  • What confused me about the possibility of CFS was that I was under the impression that there was always about the same level of unwellness. The fact that I have the "sick spells" made me think it might be something else. I also forgot to mention that I have a low-grade fever (between 99 and 99.5) a lot of the time. nope.. CFS is a very up and down, all over the place illness.. it certainly isnt a stable kind of illness, this is one of the things which help define it from other illnesses. One can also be feeling well at times with CFS (thou some do never feel well), until triggered worst into it all again. It follows a pattern of remitting and "crashing" with symptoms. "The GI symptoms are bad on a regular basis, but worse during a "sick spell". The worst/sicker one is with CFS. usually the more symptoms flare up or will get worst with the illness so the GI symptoms being worst during a "sick spell" happen. (Thou symptoms, certain ones.. can be constant to a degree). low grade fever is normal in CFS Im not saying you do have this illness....but it fits. All other things need to be ruled out first.
    taniaaust1 2267 Replies Flag this Response
  • Thanks to everyone for the replies. I have another question. Lately I've been having a lot of problems with my stomach and small intestine burning. Sometimes my stomach feel like it's swollen. In the 2 years I've been sick, I haven't once thrown up even though I've endured severe bouts of nausea (enough to get dehydrated) and my stomach has flipped non-stop for long periods of time (it feels like I'm being tortured). As far as I can remember, I haven't thrown up since I was 7 or 8 and I'm now 21. I was wondering if this could be one of the reasons that I can't seem to get rid of what's making me sick. Will the body always rid itself of pathogens or, for some reason, is it possible that it cannot?
    sunflower007 7 Replies
    • August 18, 2008
    • 05:57 PM
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  • seeing you are asking for more info on some things. i'll add to my other posts. If you do have CFS.. food intollerances are common in this (they often develop after a time) and they often make the stomach issues worst. Most with CFS also have IBS. IBS can often be helped with good probotics and fibre supplements taken regularly .. and avoiding any triggering foods. fingernails turn purple a lot In CFS... poor circulation is quite common. Studies have shown that 75%+ of CFS people have been found to have a problem with hypercoagulation ... Antiphospholipid Antibody Syndrome . So i guess on that basis...the poor circulation in CFS makes sense. A special test is done to pick up Antiphospholid Antibody Syndrome.. also known as Hughes Syndrome. a majority of individuals diagnosed as Chronic Fatigue Syndrome (CFS) &/or Fibromyalgia (FM) on clinical criteria may be defined as AntiPhospholipid Syndrome (APS) with the endothelial cell (EC) as the disease target with or without platelet activation (PA). These patients have a hypercoagulable state demonstrated by increased markers of coagulation activation and increased blood viscosity due to the generation of Soluble Fibrin Monomer (SFM).
    taniaaust1 2267 Replies
    • August 19, 2008
    • 01:36 AM
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  • do you get pain right off yor right hip bone?
    Anonymous 42789 Replies
    • August 19, 2008
    • 06:28 AM
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  • Have you had any luck following up with the Cardiologist about the low BP?I have been having similar symptoms although I'd say the focus of my symptoms is different- less GI trouble and more in my head region. So I am curious. I do know people who have had masses that went undetected by routine colonoscopies etc. so if you feel that might be what it is, please push them to further investigate. I'm not saying it is but I think we often have an intuition that is more useful than most doctors will acknowledge. I am becoming more and more sure that I have an infection somewhere they haven't thought to look yet that is causing my dizziness, headaches, dull pains in various lymph node locations, low temps, low BP, low heart rate, gas, fatigue, generalized weakness and neurological symptoms. My theory is that my immune system fighting an infection is causing my lymph nodes to be inflammed on and off and my temp to drop and the fatigue. The lymph nodes being inflammed causes my headaches, presses on nerves causing the weakness and dizziness and the low temperature is affecting my brain like a high fever would causing just enough swelling to cause motor problems and cognitive problems. Up til now my non-ENT docs have been blaming my opacified sinus for my problems. My ENT cleaned out my sinus a week ago and so far the dizziness is twice as bad. So I don't know if that helps you at all or if it just counts as a rant. I hope not.I hope it sheds some light or gives you another idea or at least some support.
    dizzy lizzie 192 Replies
    • August 19, 2008
    • 04:23 PM
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  • Occult infection seems a reasonable choice. Do you have any signs of infection besides your general constitutional symptoms and the low grade fever?Dizzy Lizzy, do you have any idea what kind of infection you are talking about? Is your doctor willing to give you antibiotocs? I'm interested because I have been suffering for the last seven months with severe fatigue, left back pain, intermittent thick yellow sputum, irregular heart rate, nausea, lack of appetite, night sweats, and multiple lymph nodes which are tender and soft. I have finally asked for azithromycin, on the chance that it is an infecion producing a toxin, which makes me nauseated and tired. Marionstar
    marionstar 228 Replies
    • August 19, 2008
    • 07:03 PM
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  • Thanks again for the replies. I'll try to answer a few of the questions. I had an x-ray done on my salivary glands a year ago and there were no stones/masses. They're just swollen, making my face look uneven. As for Lyme disease, I've never been tested but the doctors I've seen don't see a reason to test for it. They claim that because I got better after that initial 2 1/2 months (even though I still don't feel well) that Lyme and a lot of other things are ruled out. My symptoms other than low-grade fever are the GI problems, weakness, dizziness, and low blood pressure. My doctor thinks the low bp is from an imbalance of electrolytes. He suggested I try drinking Gatorade, but it doesn't seem to do much. I had another urinary tract infection a few weeks ago that was treated with antibiotics. It took a week for the infection to feel like it was gone, but I was retested and it was gone. I hope they find out what's making you sick soon, Dizzy Lizzy and Marionstar. I've been battling whatever this is for 2 years and can't believe the doctors haven't found anything. It seems so weird that you can be so sick and have almost every test come back negative.
    sunflower007 7 Replies
    • August 19, 2008
    • 08:06 PM
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  • Occult infection seems a reasonable choice. Do you have any signs of infection besides your general constitutional symptoms and the low grade fever?Dizzy Lizzy, do you have any idea what kind of infection you are talking about? Is your doctor willing to give you antibiotocs? I'm interested because I have been suffering for the last seven months with severe fatigue, left back pain, intermittent thick yellow sputum, irregular heart rate, nausea, lack of appetite, night sweats, and multiple lymph nodes which are tender and soft. I have finally asked for azithromycin, on the chance that it is an infecion producing a toxin, which makes me nauseated and tired. MarionstarMarionstar,I don't know exactly what kind of infection. I had 2 incidences last year of non-classic presentations of strep. The first was when the headache that feels like a pole was stuck in the back of my head at the base of my skull on the right side started. I went away after a round of I think Augmentin. That was Feb/March 07. Then I was fine until August 07 when I had progressive persistent fatigue and no other symptoms. My doctor ran blood and urine tests and said immediately when she looked in my throat that I had a throat infection. The blood tests were clean but the urine test showed "strep in my urine and blood cells"- her words. She had given me Augmentin anyway which did nothing to help me. By the 4th day I was still getting worse so she doubled up with Avelox. It seemed to do the trick. Jan '08 the fatigue comes back and goes untreated due to gross negligence of the replacement of my GP. I then developed the dizziness and generalized muscle weakness and eventually the stabbing headaches came back too. Through all three episodes my temperature would drop to as low as 97.1. Every doctor has ignored this saying - if it's not higher than normal then it doesn't count as a fever. I can find virtually no information on low temps, except for it being listed as symptoms of things like MS (which has been ruled out by MRI for me). I also don't think that the dull pains I've been having in lymph node locations have been paid attention to b/c everyone was focussed on MS, RA, Lupus, etc. So if I had to guess it would either be strep, or an environmental toxin such as candida or fungal infections. I just had my sinus cleaned out and the cultures should show it if they ran what they said they would.I wouldn't be surprised if your hunch is correct about your mystery illness too.DL
    dizzy lizzie 192 Replies
    • August 19, 2008
    • 09:13 PM
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  • Thanks again for the replies. I'll try to answer a few of the questions. I had an x-ray done on my salivary glands a year ago and there were no stones/masses. They're just swollen, making my face look uneven. As for Lyme disease, I've never been tested but the doctors I've seen don't see a reason to test for it. They claim that because I got better after that initial 2 1/2 months (even though I still don't feel well) that Lyme and a lot of other things are ruled out. My symptoms other than low-grade fever are the GI problems, weakness, dizziness, and low blood pressure. My doctor thinks the low bp is from an imbalance of electrolytes. He suggested I try drinking Gatorade, but it doesn't seem to do much. I had another urinary tract infection a few weeks ago that was treated with antibiotics. It took a week for the infection to feel like it was gone, but I was retested and it was gone. I hope they find out what's making you sick soon, Dizzy Lizzy and Marionstar. I've been battling whatever this is for 2 years and can't believe the doctors haven't found anything. It seems so weird that you can be so sick and have almost every test come back negative.UGH! I'm sorry. Someone I work with was sick for a year while they did blood culture after blood culture. They did finally figure out which infection she had and by that time she had to have heart surgery b/c it had reached her heart. I truly hope they find ours before it gets that far. It is UNREAL to me that so many of us are going through this same or similar thing. I just read another story on NeuroTalk of a woman who struggled for years before finally finding the source of her neuralgia was Mycoplasma infection. So maybe that should be one of my next steps. Good luck and please let me know if you find an answer.
    dizzy lizzie 192 Replies
    • August 19, 2008
    • 09:32 PM
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  • To Sunflower007, I hope you insist on a Lyme test; if you can't get your doctor to do it, Igenex laboragories does the battery including Lyme, babesiosis and ehrlichiosis. Just feeling beter after 2 1/2 months does not rule out Lyme disease. Check out some of the Lyme websites. Also, mycoplasma is tested by Clongen Laboratories; you can find them on the web and call them to find out how to get tested. Hopefully you are able to get these tests done.And to Dizzy LLizzie, amazing story about your infections. Yes, lo temp IS a sign of some infetions (I think includes mycoplasma) but doctors are not keyed into looking at that. I hope you find out what is wrong. I think I will be starting azithromycin tomorrow...I'll let you know if it helps. Marionstar
    marionstar 228 Replies
    • August 19, 2008
    • 11:04 PM
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  • to sunflower007, I hope you check into the Lyme websites...Igenex Labs is a good place to get tested for the Lyme disease and its companions. Clongen labs tests for mycoplasma, you might be able to get that done by calling them. Low temperature iI think sometimes accompanies mycoplasma infections...To Dizzy Lizzie, your story is sad and i am sorry you are going through all this. I think I'll be starting antibiotics tomorrow...I'll let you know if they help. Marionstar
    marionstar 228 Replies
    • August 19, 2008
    • 11:08 PM
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  • I'm coming around to the idea of my problems being infection related as well. I have done a lot of research this past year and now always come back to the same thing - bacterial or parasite infection of the digestive tract. I too have swollen lymph nodes but my temperature is slightly up not down. I'm doing my own home testing for parasites and bacteria. I'll post my results on this forum when they come through.
    Larkenn 20 Replies
    • September 26, 2008
    • 11:35 PM
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  • Just to keep you posted, I never started the axithromycin b/c on the appointed day I developed bad diarrhea. I have instead sent some sputum for fungal cultures. My blood cultures for bacteria were normal; the sutum cuoture showed normal bacteria. It takes 4-6 weeks for a fungal culture. Marionstar
    marionstar 228 Replies
    • September 27, 2008
    • 07:07 PM
    • 0
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  • Thanks to everyone for the replies. I have another question. Lately I've been having a lot of problems with my stomach and small intestine burning. Sometimes my stomach feel like it's swollen. In the 2 years I've been sick, I haven't once thrown up even though I've endured severe bouts of nausea (enough to get dehydrated) and my stomach has flipped non-stop for long periods of time (it feels like I'm being tortured). As far as I can remember, I haven't thrown up since I was 7 or 8 and I'm now 21. I was wondering if this could be one of the reasons that I can't seem to get rid of what's making me sick. Will the body always rid itself of pathogens or, for some reason, is it possible that it cannot?It sounds like a chronic gastrointestinal inflammation. You should eliminate wheat from your diet. Look at this website. It should give you ideas how to naturally treat it. If it helps then that might be it. If it doesn't help it can't hurt. http://www.womentowomen.com/inflammation/naturalantiinflammatories.aspxhope this helps...
    Anonymous 42789 Replies
    • August 25, 2009
    • 08:31 PM
    • 0
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  • hi, haven't followed your entire thread, but are you at risk for Lyme disease? It carries with it gastrointestinal symptoms. Marionstar
    marionstar 228 Replies
    • August 27, 2009
    • 07:56 PM
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  • Over the past year I've had the same symptoms but also some new ones. I've had 6 higher grade fevers since last October (100-103.5). Some were associated with a urinary tract infection, but others weren't. I had my bladder scoped and nothing unusual was found. The urologist said that a bladder infection should not be causing a higher grade fever, and if I'd had kidney infections I would have been much sicker. I've also had trouble with aching wrists, hands, ankles and feet (no visible swelling). I was tested once more for antibodies, including ANA and anti-phospholipid, all of which were negative again. I'm currently waiting to see a rheumatologist and I'll hopefully also be tested for Lyme's disease. Considering the swelling in my salivary glands has been present for 3 years now, along with the GI and inner ear symptoms, I was wondering if anyone has any other ideas. From what I understand, the antibodies for Lupus and other autoimmune disorders sometimes take years to show up, but I'm not sure how much time I should spend pursuing that route versus looking for another answer. Thanks in advance for any ideas.
    sunflower007 7 Replies
    • September 17, 2009
    • 06:22 PM
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  • do you get pain right off yor right hip bone?I have some of these symptoms and the hip pain, what does that mean?????
    Anonymous 42789 Replies
    • January 28, 2010
    • 02:06 AM
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