Discussions By Condition: I cannot get a diagnosis.

Please Help - Nausea, Lightheadedness, fatigue, weakness, pain

Posted In: I cannot get a diagnosis. 33 Replies
  • Posted By: palberry
  • November 28, 2008
  • 02:45 AM

I apologize for the length of this post but over the past 4 months I have been through pure misery and no one can tell me what to do or even give me a possible diagnosis. I have spent over $20k and still I sit here miserable and undiagnosed - I am begging ang willing to hear any opinions or information you can give me:

My history:
in 2001 following being ill and undiagnosed I went to the Mayo Clinic in Jax, FL was found to have Graves disease and nodules on my Thyroid we dud Nuclear Medicine which "fried" my thyroid I now take Synthroid and like clockwork have all thyroid levels checked every 3 months. I also had a complete hysterectomy to include both ovaries, tubes, uterus & cervix due to severe endometriosis, ovarian cysts and cancer cells in my uterus and ovaries. I did Chemo for 12 months and have been clean ever since. I get checked out every year to make certain I remain cancer free. I do currently take EvaMist which is an Estradiol spray to treat the hot flashes as I am only 32 and they do get severe along with the night sweats. After the Nuclear medicine to get rid of my Thyroid I developed Migraines but was able to keep them under control with Topomax and Elavil as maintanence drugs and Imatrex as needed. I do have asthma and take Advair and Albuterol as needed too. All of these symptoms and problems above are under control. The issues are below:

In May of 2007 for no apparent reason I suddenly woke up one morning with the following symptoms:
nausea, diarrhea, fatigue the doctor gave me compazeine and Lomotil and in 2 weeks it just suddenly went away so we wrote it off as I had just picked up a bug from somewhere.

End of March 2008 same exact symptom came back again only to include lightheadedness this time. I went back to the doctor he advised I take the rest of the Lomotil and Compazeine to control the symptoms and added Pepcid and sent me for an ultrasound of my Gallbladder (which came back normal). Again this episode lasted about 2 or 3 weeks and just as suddenly went away again.

End of June I got sick with a severe sinus infection and went back to the doctor to get it treated. When I finished the treatment I felt great for about 2 or 3 weeks and then the symptoms from previously came back with a vengence and a few more were included:
nausea, vomiting, diarrhea, gas, fatigue, muscle weakness and stiffness, body pain, light headedness and dizzyness. I again went back to the doctor. He again sent me for an Ultra sound for my gall bladder and liver and both came up normal. He put me back on Compazeine, Lomotil, Reglan and gave me a referral for a Gastroenterologist. I went back to my doctor because I was so miserable. He put me on Xanax and gav me a script for valium told me he wanted me to take some time off of work until he could figure out my problem. I filled the valium and took it once and never took it again as it knocked me out cold. The xanax I was taking at bedtime to help sleep because even though I am so tired I was having trouble sleeping. Things continued to get worse as I had found I lost 20 pounds in 4 weeks and was still nauseas and had all the symptoms every day so I went to the ER doctor changed me to Zofran since the Compazeine hadn't been working and also sent me for a stool sample. He gave me 3 bags of IV and advised I come back in 2 days if I still couldn't keep food or liquids down or got worse. I went to the GI he did a colonoscopy and endoscopy said everything was normal and I was a new patient and thus he didn't really have the time to figure out my problem so I should think about finding another GI. Therefore since I was still so ill I went to the Cleveland Clinic, FL and saw the Gastro dr who diagnosed me with functional gastro disorder. He took me off the elavil and put me on nortripltiline. After a 4 week period of waiting to see if this medicine change would work and also getting the results of the gastric emptying (which came back normal) I actually had a 2 week period where I felt great. I was finally back to normal. That Normal only lasted 2 weeks. Then everything was back to ***l again and this time I had another symptom of head aches and migraines. (However, I think this may have something to do with the weather changes right now too - so I'm not really sure about this being an associated symptom). So this dr said he misdiagnosed me he doesn't feel I have functional GI disorder and I went back to my dr who told me to see a neuro. I went to one from the Cleveland Clinic (just pulled one from the book) and he said he has no idea what is wrong with me either but he put me on topomax 100mg a day- I was displeased as he said "since I work in the accounting field my problem is purely psychiatric because of the economy". So, I am begging - can someone please give me a direction to go? I have gotten to the point where I have figured this is just the way I have to spend the rest of my life and this is no life at all. I did just find something on Addison's disease which lists a lot of my symptoms. Also the physican asst at the neuro on 11/26 during her exam took my BP laying down it was 110/80 sitting up she said it was very had to hear and it took her 4 times but when she finally got it she said it was 96/70 and standing up she said was even harder to hear but finally she got it at 80/50. my pulse was rather fast at around 110 she said that was because I was nauseas and in pain.....

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33 Replies:

  • I forgot to tell you I have been through masses of blood work tested normal for Lupus, Espstein Barr, thyroid counts are correct and full blood work ups have been run all coming back within normal range. Blood glucose levels are also normal...
    palberry 6 Replies
    • November 28, 2008
    • 03:10 AM
    • 0
    Flag this Response
  • Did they biopsy the thyroid nodules.. if so was it carcinoma or adenoma? and did they identify your predisposition to the various diseases?That might be where to start. I was reading an article on endometriosis and the link with ovarian carcinoma and they mentioned a few mutations that in p53 or bcl that could explain the link between the two diseases. These both are common pathways for a variety of neoplasms. A genetic analysis might be helpful.The biggest problem with your symptoms is that they are very non specific so it's hard to come up with something that fits.Have you noticed any rashes, changes in the color of your skin, strange bumps, stool color, urine foamy?If they did blood work did you get any strange ion levels, Sodium, Potassium, Calcium.. that might suggest Multiple endocrine neoplasm, which could result in adrenal related salt problems.
    nckmorris 53 Replies
    • November 28, 2008
    • 03:25 AM
    • 0
    Flag this Response
  • Thank you so much for responding so fast! No they did not do a biopsy because they did not remove the thyroid only did the nuclear medicine where you swallow the 2 pills and it literally destroys the Thyroid gland. I did have severe endometriosis of my ovaries and uterus. to the extent where my uterus kept connecting to my uterus and they had to keep going in and putting this gel like material in between them - then they ended up just taking the uterus out completely. No rashes or changes in skin condition though it does seem a lot dryer than it used to be - I have to slather on lotion and baby oil constantly. No foamy urine - though in my opinion in the morning it is rather dark. I am really thirsty all the time and my mouth is dry but those are new and started when I started taking the nortriptiline (and are side effects - I plan on going off this and back to the elavil since it is the same med but I had no side effects from it) which will eleviate these 2 symptoms. I do have freckles but nothing out of the ordinary - I do see a dermatologist annually as my sister passed away of matastasized melanoma before her 34 birthday. Nothing different in the stool except now more often then not I have constipation even if I take Dulcolax or Citrucel (I never have had constipation in my life so this is a totally new experience). All blood counts came back within normal range including sodium and potassium, CBC, WBC, RBC. I was adopted so don't know 100% of my certain medical history but I do know that the following do exist on my mother's side:breast cancer, gall bladder problems, gasteritis, stroke, uterine cancer, kidney stones, arthritis I am sure I may be missing a couple here or there but if mentioned I could recall.
    palberry 6 Replies
    • November 28, 2008
    • 03:48 AM
    • 0
    Flag this Response
  • Have you been on long term antibiotic therapy in association with other treatments?if so, Antibiotic Associated Diarrhea: Clostridium difficile..
    nckmorris 53 Replies
    • November 28, 2008
    • 03:49 AM
    • 0
    Flag this Response
  • Hmm...no. I am frequently sick with sinus infections, bronchitis, pneumonia or otherwise - I just chalked it up to the fact I have asthma so am more likely to catch stuff that goes around - so in essence I am on antibiotics more often than the normal person would be. I tried to up my Zinc supplement in June as recommended by the doctor to prevent me from getting sick but when I took the pill it made me nauseas so I stopped taking that additional supplement.
    palberry 6 Replies
    • November 28, 2008
    • 03:53 AM
    • 0
    Flag this Response
  • Never mind, symptoms are not strong enough...I was trying really hard to match it to a GI infection.. but it's hard to find ones that fit the chronic pattern, and the extent of your symptoms.
    nckmorris 53 Replies
    • November 28, 2008
    • 03:54 AM
    • 0
    Flag this Response
  • It could really easily be salmonella.. It's hard to tell if they would do cultures for that, but I'm guessing not because they were looking for organ problems.. probably not.Much like typhoid mary.. you can carry Salmonella chronically.
    nckmorris 53 Replies
    • November 28, 2008
    • 03:58 AM
    • 0
    Flag this Response
  • The worst thing you could possibly have based on your history is the very very very small possibility of neoplasm of the GI. According to some slightly unreliable sources because the medical literature is much to hard to browse through without subscriptions to all of the sites, endometriosis can also lead to an increased risk of lymphoma. On article i did find about GI-T Cell lymphoma." The most common presenting symptoms were abdominal pain (84%), weight loss (81%), diarrhea (39%), or vomiting (29%)"http://jco.ascopubs.org/cgi/content/full/18/4/795statistically the chance that you would have this is nearly zero. but it's better to eliminate things like this.Like I said before, vague symptoms. and this would present with a high white blood cell count, i believe.
    nckmorris 53 Replies
    • November 28, 2008
    • 04:27 AM
    • 0
    Flag this Response
  • I apologize for the length of this post but over the past 4 months I have been through pure misery and no one can tell me what to do or even give me a possible diagnosis. I have spent over $20k and still I sit here miserable and undiagnosed - I am begging ang willing to hear any opinions or information you can give me: My history:in 2001 following being ill and undiagnosed I went to the Mayo Clinic in Jax, FL was found to have Graves disease and nodules on my Thyroid we dud Nuclear Medicine which "fried" my thyroid I now take Synthroid and like clockwork have all thyroid levels checked every 3 months. I also had a complete hysterectomy to include both ovaries, tubes, uterus & cervix due to severe endometriosis, ovarian cysts and cancer cells in my uterus and ovaries. I did Chemo for 12 months and have been clean ever since. I get checked out every year to make certain I remain cancer free. I do currently take EvaMist which is an Estradiol spray to treat the hot flashes as I am only 32 and they do get severe along with the night sweats. After the Nuclear medicine to get rid of my Thyroid I developed Migraines but was able to keep them under control with Topomax and Elavil as maintanence drugs and Imatrex as needed. I do have asthma and take Advair and Albuterol as needed too. All of these symptoms and problems above are under control. The issues are below: In May of 2007 for no apparent reason I suddenly woke up one morning with the following symptoms:nausea, diarrhea, fatigue the doctor gave me compazeine and Lomotil and in 2 weeks it just suddenly went away so we wrote it off as I had just picked up a bug from somewhere. End of March 2008 same exact symptom came back again only to include lightheadedness this time. I went back to the doctor he advised I take the rest of the Lomotil and Compazeine to control the symptoms and added Pepcid and sent me for an ultrasound of my Gallbladder (which came back normal). Again this episode lasted about 2 or 3 weeks and just as suddenly went away again. End of June I got sick with a severe sinus infection and went back to the doctor to get it treated. When I finished the treatment I felt great for about 2 or 3 weeks and then the symptoms from previously came back with a vengence and a few more were included:nausea, vomiting, diarrhea, gas, fatigue, muscle weakness and stiffness, body pain, light headedness and dizzyness. I again went back to the doctor. He again sent me for an Ultra sound for my gall bladder and liver and both came up normal. He put me back on Compazeine, Lomotil, Reglan and gave me a referral for a Gastroenterologist. I went back to my doctor because I was so miserable. He put me on Xanax and gav me a script for valium told me he wanted me to take some time off of work until he could figure out my problem. I filled the valium and took it once and never took it again as it knocked me out cold. The xanax I was taking at bedtime to help sleep because even though I am so tired I was having trouble sleeping. Things continued to get worse as I had found I lost 20 pounds in 4 weeks and was still nauseas and had all the symptoms every day so I went to the ER doctor changed me to Zofran since the Compazeine hadn't been working and also sent me for a stool sample. He gave me 3 bags of IV and advised I come back in 2 days if I still couldn't keep food or liquids down or got worse. I went to the GI he did a colonoscopy and endoscopy said everything was normal and I was a new patient and thus he didn't really have the time to figure out my problem so I should think about finding another GI. Therefore since I was still so ill I went to the Cleveland Clinic, FL and saw the Gastro dr who diagnosed me with functional gastro disorder. He took me off the elavil and put me on nortripltiline. After a 4 week period of waiting to see if this medicine change would work and also getting the results of the gastric emptying (which came back normal) I actually had a 2 week period where I felt great. I was finally back to normal. That Normal only lasted 2 weeks. Then everything was back to ***l again and this time I had another symptom of head aches and migraines. (However, I think this may have something to do with the weather changes right now too - so I'm not really sure about this being an associated symptom). So this dr said he misdiagnosed me he doesn't feel I have functional GI disorder and I went back to my dr who told me to see a neuro. I went to one from the Cleveland Clinic (just pulled one from the book) and he said he has no idea what is wrong with me either but he put me on topomax 100mg a day- I was displeased as he said "since I work in the accounting field my problem is purely psychiatric because of the economy". So, I am begging - can someone please give me a direction to go? I have gotten to the point where I have figured this is just the way I have to spend the rest of my life and this is no life at all. I did just find something on Addison's disease which lists a lot of my symptoms. Also the physican asst at the neuro on 11/26 during her exam took my BP laying down it was 110/80 sitting up she said it was very had to hear and it took her 4 times but when she finally got it she said it was 96/70 and standing up she said was even harder to hear but finally she got it at 80/50. my pulse was rather fast at around 110 she said that was because I was nauseas and in pain.....I didn't read the date on this. But my brother who is 39 has the exact same symptoms.....he's been to doctor after doctor and like you everything is coming back normal. He's had to leave his job as a school bus driver because the symptoms are so bad. If you have found an answer ...please share, he's desperate for help. And no one seems to be able to figure out what's wrong with him. They sent him to a psychiatrist who put him on Zoloft. But he's only been on it a few days so nothing yet. Along with all the symptoms you have listed above he's had green stool. They did a stool test and that came back normal too. I know stress can cause many of these symptoms but it can't cause green stool. Any and all help would be appreciated. much thanks Tiki
    Anonymous 42,789 Replies
    • January 31, 2009
    • 04:08 AM
    • 0
    Flag this Response
  • No, sorry, I am still burdended with the same issues. After even more tests gastric emptying, bilary scan, more blood work and MRI's they just told me that they have to treat the symptoms because they can not find the problem. They told me nausea is too hard to diagnose so they just put me on a bunch of meds to try to counteract the symptoms. I did end up losing my job as well due in part to the health problems so it has affected my entire life. I wish your brother the best - if you find anything out, please post back and let us know the result. All of my blood work and tests still come out normal so who knows......?? I never had the greem stools though so I would think that surely should be a telltale for something findable...
    palberry 6 Replies
    • January 31, 2009
    • 09:39 PM
    • 0
    Flag this Response
  • Generalized anxiety disorder or GAD is characterized by excessive, exaggerated anxiety and worry about everyday life events. People with symptoms of generalized anxiety disorder tend to always expect disaster and can't stop worrying about health, money, family, work or school. In people with GAD, the worry often is unrealistic or out of proportion for the situation. Daily life becomes a constant state of worry, fear and dread. Eventually, the anxiety so dominates the person's thinking that it interferes with daily functioning, including work, school, social activities and relationships.Here are the causes that you should prevent to avoid having it: Genetics: Some research suggests that family history plays a part in increasing the likelihood that a person will develop GAD. This means that the tendency to develop GAD may be passed on in families. Brain chemistry: GAD has been associated with abnormal levels of certain neurotransmitters in the brain. Neurotransmitters are special chemical messengers that help move information from nerve cell to nerve cell. If the neurotransmitters are out of balance, messages cannot get through the brain properly. This can alter the way the brain reacts in certain situations, leading to anxiety. Environmental factors: Trauma and stressful events, such as abuse, the death of a loved one , divorce, changing jobs or schools, may lead to GAD. GAD also may become worse during periods of stress . The use of and withdrawal from addictive substances, including alcohol, caffeine and nicotine, can also worsen anxiety.
    Anonymous 42,789 Replies
    • February 1, 2009
    • 00:16 AM
    • 0
    Flag this Response
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  • Thank you cez6 for the suggestion.However, I did finally break down and see the phychologist as was recommended. They put me on Xanax which I take every evening but even she said that the problem doesn't seem to be psychological but rather she feels I have a good control over my professional and personal life and that she does not see any depression or anxiety disorder. She stated in her report that she felt that my issue was a sincere medical issue that I needed to pursue until I figured out what it was. I have kept with her (just to be on the safe side) treatment and do keep appointments with her to discuss the status until finally if ever something will be found. I had never heard of GAD prior but they did prescribe me the Xanax and also Valium previously for symptom control which I did not take. I do take the Xanax now-I don't feel it really does anything for me-but I take it once a day just to settle my nerves and get a good noght's sleep.
    palberry 6 Replies
    • February 2, 2009
    • 00:31 AM
    • 0
    Flag this Response
  • I have had the same symptoms you have described. I have had them since Oct. 2008. I lost my job, had to leave college, and had to move back in with my parents. I have been in and out of hospitals/doctors' offices/testing facilities/etc., and still nothing. Every test they have done has come back normal. They suggested that I had Fibromyalgia, but my family doctor does not agree. No one can give me any answers, if anyone finds some, please let me know. My life is on hold until this gets resolved.
    Anonymous 42,789 Replies
    • February 15, 2009
    • 05:14 AM
    • 0
    Flag this Response
  • Same symptoms here, just got past the 18month mark with no helpful suggestions. Am trying GERD treatment (with PPI) as a shot in the dark (can present with chronic nausea no burning...)...Have had all the tests, been on antidepressants, seen specialists, seen shrinks, all to no avail. I'll keep you posted on the GERD treatment, hope we can figure this out....Getting answers shouldn't be this hard!
    Anonymous 42,789 Replies
    • February 17, 2009
    • 05:23 AM
    • 0
    Flag this Response
  • This is unbelieveable. I can not believe I have found people with the same symptoms as myself. When I read Palberry's story I had to reply. I don't reply or use forums but I had to with this one. I have also had the same symptoms ongoing for several years. Just recently within the last year or so have they detected my wbc to be elevated. I am now going thru the same old test, ultrasounds, ect...over again and it is so frustrating. Have any of you ever taken the drug Effexor or any SSRI type of medication in the past? The reason I ask is because 10 years ago after 2 doses of Effexor XR I had reactions similar to serotonin syndrome. I thought I was dying...literally. Since that time I have always had problems with nausea, lightheadedness, fatigue, weakness, and severe burning stomach pains. I think there may be a connection because we all have serotonin receptors located in the GI tract. There is a surge of serotonin released in the back of the brain. As it floods the system it causes nausea, burning, dizziness, fatigue, and stomach pain. I think it is an edocrine/hormonal issue at the base of the brain. But what puzzles me is the elevated WBC count. To this day I do not take any medications, other than tylenol for hormonal headaches, because anything I have ever tried to take after the reaction causes these types of reactions to occur. I also do not trust any doctor on this planet so far. As for right now...I am just praying to feel better soon.
    ABeeinBama 1 Replies Flag this Response
  • I am a 35 yr old woman/mom/wife/full time college student. I have been experiencing similar symptoms for almost 2 years now. Nausea, vomiting, diarrhea, weakness, fatigue, weight loss, sweating... Sometimes it's worse that others. Depends largely on how run down I have gotten. I have an auto-immune disorder (RA) and have accordingly dealt with the mixed bag of stuff that goes along with it.Since August of '07, after a bout of a virus, I have been sick every morning, dry heaves and hyper-salivation sometimes with watery diarrhea. After eating dinner I often have diahreah within 5 minutes. I get so tired, weak, and dehydrated. I sweat like crazy at times, but not at night. When it's very bad I get random joint pain without swelling. I've had tons of blood work, stool cultures, abdominal ultrasound...nothing shows up.I've lost over 30 lbs, and have a few friends with similar symptoms but more pain. They have endured scoping and surgeries but still no relief, I am unwilling to put myself through it based on the lack of results they have all had.Something is going on, too many people have similar problems,and doctors have no answers? Frustrating and debilitating illness
    Anonymous 42,789 Replies Flag this Response
  • Just because I have had all the symptoms you have been mentioning, I typed them in and BINGO, I found all sorts of letters from people with the same problems. Mine started only about 10 days ago but 10 days too long. My endocrinologist had doubled my Zestril from 5mg. to 10 mg. because of my kidney problems and that's when most of my symptoms began. I called him and he said to stop it all together for a few days and then go back to the 5 mg. and see how I do but if I faint again or have any more chest pain to go to my ER; but that the other symptoms (which you all have mentioned) keep up, and I can tolerate them, they are probably from the Zestril. I am on 12 other meds. for at least 15 yrs. for all kinds of things (i, e, just a few: Fibromyalgia, low thyroid, Barrett's esophagus, post extensive back surgery-turned out great, and arthioarthritis and diabetes and kidney stones, along with several other surgeries (including removal of gallbladder in 1976 and having every duct in my digestive tract clipped open permanately) just to mentioned one. I turn 60 on July 5th and have a wonderful life and have seen all kinds of drs. throughout the yrs. I am now seeing on a regular schedule for the past few yrs: pain dr., endocrinologist; urologist and nephranologist. Anybody have any comments for ME? Lilprincess.
    Anonymous 42,789 Replies Flag this Response
  • Wish I could offer hope. I am going through the same thing. I am 33, female, mom, teacher.I had a bout with the dizziness/nausea about 2 years ago. It went away after a few months and now it's been back since the first week of June. I am so tired of them running the routine blood work only to look at me like I am crazy!This is real! My heart pounds, I get hot flashes, weakness in my arms and hands, constant lightheadedness with a headache, and nausea 24/7. My ears also feel blocked but the doctor says they look "perfectly normal" even though they are so uncomfortable!Please somebody tell me you have been diagnosed, this is driving me nuts and making life unbearable. It's the summer...I just want to feel "normal" so I can enjoy it with my kids.
    Anonymous 42,789 Replies Flag this Response
  • have they checked for Lyme Disease.
    Anonymous 42,789 Replies Flag this Response
  • Go see a geneticist, sometimes they know a lot more than the typical doctor. There are diseases that can strike early in life or later in life and just suddenly starts taking effect. Celiac Disease is one. There are probably many others.
    Anonymous 42,789 Replies Flag this Response
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