Discussions By Condition: I cannot get a diagnosis.

started with night sweats, now a constellation of debilitating symptoms

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • January 16, 2010
  • 04:11 AM

All of this started a year ago with night sweats and a stiff neck, and has progressed from there. This medical issue has become so debilitating that I am on medical leave from work because my right foot swells and hurts so bad that I can't stand on it or wear a shoe. I'm a teacher, so I need to stand.

Hopefully someone can give me some direction! I've switched my PCP 4 times this year, and have been to numerous specialists - you name it, I've seen them...rhem, neuro, hema, orthopedic, PT, vascular, GI, etc...I've even been to the Mayo Clinic. They treated me like crap and I came back undiagnosed.

here is a list of my current symptoms:
• sore throat
• feeling of something in my throat, throat tightness
• metallic taste in mouth.
• intermittent cough
• intermittent night sweats
• severe itching all over body, esp right side trunk area; hypersensitive skin
• widespread burning pains
• electric-like “zaps”; pins and needles, aggravated by exercise and increased blood flow
• skin feels like sandpaper is rubbing it all over, esp right side
• Spider veins, petechiae, angiomas, strange bruising.
• New stretch marks appear on abdomen, and have increased in size and number since, esp. near appendix scar. Little hairs growing out of it too.
• Leg cramping and foot swelling (right side)
• Gallbladder polyps grow from 1 to 3.4mm in 2 months; common bile duct grows from 1 to 4mm
• cracking and crunching sounds in neck and back with movement
• severe pain along right side of body; abdominal swelling and pain
• Hands turn blue after shower; feet turn hot pink; blotching skin; blood vessels pop out
• Muscle twitching and “jumping.”; muscle pain and burning, weakness
• Constipation (new)
• Pain/burning radiating to upper right back, through shoulder & arm, down to hips/pelvis/leg
• appearance of new dark spots/moles?
• Joint pain and burning
• High blood pressure.
• Snoring; throat feels like its closing up at night when sleeping
• Tiny transient pink dots appear on neck, breast and trunk, itchy.
• When coming out of shower, knees have dark pink blotches on them.
Thyroiditis/ non-toxic goiter


Abnormal Labs:
• Elevated d-dimer
• Elevated PTT
• Elevated B12
• Elevated IgA
• Very low iron & iron saturation
• Varying TSH (low/ normal)
• + antibodies for: EBV, HHV-6, Babesia, equivocal for ELISA Lyme IgG/IgM
• Liver enzymes (AST/ALT) increase from 12-15 to 28 & 32 (not out of range, but high for me, compared to past studies)

I've had every kind of scan you can think of, and nothing definitive has shown up - just little things that supposedly aren't making me sick. CT chest in march, CT adbomen in June, CT neck in march and august, brain, cervical spine and thoracic spine mris.

I was on lexapro for a few years before this all ensued and I'm convinced that is what started all of this. Right now I take:
10 mg elavil
.25 mg xanax
nexium (I went all the way to Johns Hopkins to see the medical director, and came home with a script for nexium...and he never returns my phone calls. Hello! Nexium is NOT helping!)
just started trial of doxycycline. Hubbie is convinced this is Lyme. We'll see....

I know this is a long post. Thank you for taking the time to read it. Please help!

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5 Replies:

  • All of this started a year ago with night sweats and a stiff neck, and has progressed from there. This medical issue has become so debilitating that I am on medical leave from work because my right foot swells and hurts so bad that I can't stand on it or wear a shoe. I'm a teacher, so I need to stand. Hopefully someone can give me some direction! I've switched my PCP 4 times this year, and have been to numerous specialists - you name it, I've seen them...rhem, neuro, hema, orthopedic, PT, vascular, GI, etc...I've even been to the Mayo Clinic. They treated me like crap and I came back undiagnosed.here is a list of my current symptoms:• sore throat• feeling of something in my throat, throat tightness• metallic taste in mouth.• intermittent cough• intermittent night sweats• severe itching all over body, esp right side trunk area; hypersensitive skin• widespread burning pains• electric-like “zaps”; pins and needles, aggravated by exercise and increased blood flow• skin feels like sandpaper is rubbing it all over, esp right side• Spider veins, petechiae, angiomas, strange bruising. • New stretch marks appear on abdomen, and have increased in size and number since, esp. near appendix scar. Little hairs growing out of it too. • Leg cramping and foot swelling (right side)• Gallbladder polyps grow from 1 to 3.4mm in 2 months; common bile duct grows from 1 to 4mm• cracking and crunching sounds in neck and back with movement• severe pain along right side of body; abdominal swelling and pain• Hands turn blue after shower; feet turn hot pink; blotching skin; blood vessels pop out• Muscle twitching and “jumping.”; muscle pain and burning, weakness• Constipation (new)• Pain/burning radiating to upper right back, through shoulder & arm, down to hips/pelvis/leg• appearance of new dark spots/moles? • Joint pain and burning• High blood pressure. • Snoring; throat feels like its closing up at night when sleeping• Tiny transient pink dots appear on neck, breast and trunk, itchy. • When coming out of shower, knees have dark pink blotches on them. Thyroiditis/ non-toxic goiterAbnormal Labs:• Elevated d-dimer• Elevated PTT• Elevated B12• Elevated IgA• Very low iron & iron saturation• Varying TSH (low/ normal)• + antibodies for: EBV, HHV-6, Babesia, equivocal for ELISA Lyme IgG/IgM• Liver enzymes (AST/ALT) increase from 12-15 to 28 & 32 (not out of range, but high for me, compared to past studies)I've had every kind of scan you can think of, and nothing definitive has shown up - just little things that supposedly aren't making me sick. CT chest in march, CT adbomen in June, CT neck in march and august, brain, cervical spine and thoracic spine mris.I was on lexapro for a few years before this all ensued and I'm convinced that is what started all of this. Right now I take:10 mg elavil.25 mg xanaxnexium (I went all the way to Johns Hopkins to see the medical director, and came home with a script for nexium...and he never returns my phone calls. Hello! Nexium is NOT helping!)just started trial of doxycycline. Hubbie is convinced this is Lyme. We'll see....I know this is a long post. Thank you for taking the time to read it. Please help!BUMP Please help
    Anonymous 42789 Replies
    • January 23, 2010
    • 04:03 AM
    • 0
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  • Hi, I am bumping this again. Since my last post, I've had a HIDA scan which showed my gallbladder functioning at ONE percent. SO my gallbladder was removed...yet my symptoms have still not gone away. PLEASE help!!!
    Anonymous 42789 Replies Flag this Response
  • I have a lot of the same symptoms. I have hashimotos thyroiditis and goiter,lupus,sjogrens,raynauds,chronic pancreatitis with pancreatic insufficiency,ibs,gerd, endometriosis,apls. I also have elevated b12 ....this is found in vitamin overload,liver diseases,renal failure,various myelodysplastic diseases, metabolic disorder,obesity and leukemias. My Endocrinologist is going to pretest to rule out lab error and then work me up for a cause. She is also checking my thyroid for nodules over a centimeter and or displacement from goiter that could cause the swallowing issues. If either issue is present my thyroid will be biopsied and or removed. The tingling after exercise I get because I am not ingreat shape and my heart rate goes too high. I would recommend you see a really good Endocrinologist. My Endocrinologist is Dr Kozupa in Pittsfield, ma. She is very thorough and is used to patients with complicated issues. Dr Robert lahita is a great rheumatologist in NJ or NY. I hope this helps some.Hugs...Megan
    Anonymous 42789 Replies Flag this Response
  • I have a lot of the same symptoms. I have hashimotos thyroiditis and goiter,lupus,sjogrens,raynauds,chronic pancreatitis with pancreatic insufficiency,ibs,gerd, endometriosis,apls. I also have elevated b12 ....this is found in vitamin overload,liver diseases,renal failure,various myelodysplastic diseases, metabolic disorder,obesity and leukemias. My Endocrinologist is going to pretest to rule out lab error and then work me up for a cause. She is also checking my thyroid for nodules over a centimeter and or displacement from goiter that could cause the swallowing issues. If either issue is present my thyroid will be biopsied and or removed. The tingling after exercise I get because I am not ingreat shape and my heart rate goes too high. I would recommend you see a really good Endocrinologist. My Endocrinologist is Dr Kozupa in Pittsfield, ma. She is very thorough and is used to patients with complicated issues. Dr Robert lahita is a great rheumatologist in NJ or NY. I hope this helps some.Hugs...Megan
    Anonymous 42789 Replies Flag this Response
  • I have had most of the symptoms you've had except for the polyps and goiter. Mine is a long post too, but perhaps someone will benefit. It isn't required reading, after all. Below are additional symptoms that also apply to me.• Slept 20 hours a day• acid reflux, indigestion, esophageal ulcer• painful beneath solarplex (NOT the same as indigestion feeling)• high blood pressure 220/176• sudden fast weight gain of 100 pounds • mild heart attack• onetime desire for violence attributed to reaction to newly prescribed Prozac• one incident of mild stroke attributed to reaction to newly prescribed Neuronton• unstable vision, sometimes blurs• change in body fat distribution from hips to stomach• avoidance of people / anxiety / irritability• misplaced suicidal thoughts • full body pain that kept me awake and crying all night• chest pain and extreme dizziness requiring nitroglycerin• asthmatic-like symptoms• skin wouldn't heal I have recovered through self-treatment after being endlessly treated as though my problems were all psychological. I still have a just a few pink dots showing up but without itching and rarely - that is something I understand is common for anyone as it is simply tiny capillaries very near the surface of the skin that rupture. I had them everywhere which is not so common. Before the sudden onset of illness, I had been an extremely healthy and happy person - the type that organizes large groups to go camping, hiking, boating - someone who hosted parties, had many good friends, went out dancing or playing sports seven days a week. I was healthy, happy, educated and liked. My history was, however, never considered in the attitude of the doctors. I saw a doctor because I simply couldn't wake up for more than 4 hours a day. I was presumed to be depressed and the doctor convinced me to start antidepressants to see. This all began at about age 38 - I was put on serious antidepressants from the outset (desipramine + others later) and later antipsychotics (resperidal) without considering other possibilities. Chronic depression then DID set in and I began to have more symptoms that led to more pills and more illnesses ever since - at least until I had stopped every single medication by 2006. I am not a doctor or in any medical field, but I have done 20+ years of medical research specific to me. I have been medically diagnosed and treated for depression, BPD, GERD, general pain, heart attack, esophageal ulcer, stomach bugs and everything else but the right one. In 2006 by accident my research started down another road and now most of my health problems are a thing of the past. While I don't suggest you simply copy what I did without discussing it with your doctor, here are some things what worked for me and MAY help you:Depression continually worsened on antidepressants until I reached a point of constant suicidal thoughts that seemed out of place - still not my mood or desire. I was frustrated and so was struggling to get healthy by taking lots of vitamins and minerals. Then I discovered Twinlabs Optifuel (now Twinlabs Mass Fuel), a whey isolate protein for body-builders. It had more nutrition (amino acids, vitamins, minerals) than any meal replacement or supplement by far, so I began taking it. I started having headaches and went to my psychiatrist who told me that it was increasing serotonin to my brain, duplicating the antidepressants. He told me I should stop taking it immediately for that reason, but it seemed more logical to keep what was all-natural since they both did the same thing, so I stopped the antidepressants instead. After that my depression steadily improved with no serious suicidal thought since. Combined with a healthy diet over the years, I am finally off of 10 years Social Security Disability from depression and it no longer interferes with my life in more than a minor way. I find the amino acid supplements are crucial to staying out of that depression. I am convinced the antidepressants were themselves the cause of depression and recent TV warnings seem to reaffirm my suspicion. I still had the physical sleep problem that I had in the beginning as well as many new physical problems, so I sought additional help that led to more meds and even more doctors until my life was a nightmare of 24 hr pain and discomfort. One night I was up late and saw Kevin Trudeau selling his book " Natural Cures "They" Don't Want You To Know About". I rolled my eyes assuming it was a junk, but he said something that stuck and I tried it. I was, at that time, suffering with ten times more acid reflux and pain AFTER the doctors treated me than before. I also gained an esophageal ulcer AFTER the doctors treated me - I was miserable. My acid was in my throat day in and day out. Kevin Trudeau spoke of how doctors prescribe antacids when the problem is really having too little acid and suggested testing it with a tablespoon of cider vinegar.I went to the kitchen, took a tablespoon of cider vinegar ... VOILA! Acid reflux stopped for the first time in years! I followed up with research and he was right. Ibuprofen thins the stomach lining resulting in too little stomach acid; antacids reduce stomach acid; age reduces stomach acid; and reflux into the esophagus often comes from the stomach having too little acid to digest foods fast enough. I stopped the antacids; I stopped the ibuprofen and all other NSAID's. Then I added HCL Acid tablets, acidophilus milk and other enzymes to my supplements and have hardly ever had reflux or indigestion since. Also, all the other symptoms in our lists above soon disappeared except for a few red dots, the high blood pressure, and the established weight gain of course. Many seem unrelated, but still went away. I finally felt good but my blood pressure was still through the roof, I was still obese, and nurses all struggled to find veins in me, so I kept making more changes. Over time I simply changed my diet so I am eating more organically, with lots of organic fresh fruits, vegetables and grains added to my diet that was already high in milk products. I added essential fatty acids to be sure I get 3,6 and 9 fatty acids. I eat meat, rarely beef, and added other nonmeat proteins and lots of fish and fish oil to my diet. I eliminated sugar and corn syrup (in canned goods) and now don't even keep sugar around and don't miss it. Since eating fruit, kasha, teff, and brown rice so much, my cravings have simply changed to healthy food. I didn't even have to work on breaking the sugar habits. I no longer have unusual mood swings, my depression is situational now, my health is good and my blood pressure is down to 86/67 with good pulse and strong veins. I lost 70 pounds in 2 months of zealous exercise but hit a plateau. It took over 20 years to develop my current opinion.Here is most important in what I learned: My body clearly has difficulty absorbing nutrients and amino acids. I have read repeatedly in university and medical journals that this is most likely true of anyone who has a disease and I have also read that as much as 50% of the public can have absorption problems. This inability to get nutrients, especially amino acids, can lead to many other breakdowns in our bodies, hence the long list of symptoms that doctors write off as hypochondria. Taking whey isolate is a natural (food, not drug) way to provide protein that is readily absorbable - it is essentially predigested which is why it is so good for building muscles fast. It also builds other cells fast, improving immunity and repairing the body, but that isn’t advertised. Protein is the source of essential amino acids which are essential to every cell in our bodies, allowing our cells to repair or reproduce themselves. That includes neurotransmitters to the brain, blood cells, liver cells, heart cells and every other cell. Amino acids = repair. I also now treat my digestive mechanisms as a first course of treatment and it has been the right course for over 5 years now, as well as as in the long healing process before that. I still use HCL acid, enzymes, mastic and a few natural herbs to manage the days when I feel out of sorts and it has been all I need. I'm turning 59 and feel like I am almost back to age 30 except for muscle tone and weight. As a lifestyle I make sure I get enough NATURAL nutrients (amino acids/protein, essential fatty acids, vitamins, minerals) to provide my body with the tools to heal itself. I also make sure to reduce unhealthy bacteria in my body by drinking acidophilus milk regularly (probiotics) - there are also other ways to get probiotics such as Keffer. Yogurt has very little probiotics so I don't bother and I personally don't believe probiotics in pill form can be healthy live bacteria. I am trying to build up my exercise to help provide oxygen to every cell and to improve the distribution of nutrients to every cell.I don't mean to suggest anyone should throw out their medications or ignore their doctors. I do, however, suggest that they check them out thoroughly and be sure they are necessary instead of blindly relying on the doctor's opinion. The long list of side effects they have on their inserts should be clue enough. Too many doctors prescribe what is most common for relief of symptoms without helping cure anything, but I believe they are doing the best they can with a system that is way too complex for ANY human mind. I think it is taking too long for the medical field to wake up to their limitations, especially the unseen dangers in prescriptions. I believe our Creator designed our bodies to be excellent at maintaining our health if we provide the tools. I let doctors sew-me-up but not prescribe-me-up any more. In any case, it can’t hurt to eat healthy! Boy am I longwinded! Best of luck to all in resolving your issues!
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