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6packofun

Have you ever had (or do you have) a health issue for which you never received an explanation?

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I'm curious about how many people have had any sort of health issue--whether discomfort/pain or anything at all that concerned you enough to seek medical advice about it--BUT never got a conclusive answer to a cause or cure.  Please share your experience!  How long did the issue last and is it still occurring or did it resolve somehow? 

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Plenty.  I’m still trying to figure it out.

 

Honestly?  My experience with the medical profession is that it is rare when they can actually help anything that isn’t an acute injury or one of a handful of common conditions.  Otherwise it’s just a ton of tests and guesswork and precious few answers.

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I have had chronic illness for going on 30 years. There is no cure. There are theories but no definitive answers as to cause etc. I am not alone amongst the chronic illness community. 

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My dad has neuropathy in his legs and feet. He has seen several doctors, including the head neurologist at a famous hospital, who ran numerous tests. He is not diabetic (a common cause of neuropathy). No explanation. He will never get better and is getting worse.

My SIL's SIL had an unexplained health issue that was deblitating. She saw many specialists. After a couple of years, it improved, also with no explanation.

DH's aunt also has issues that doctors can't explain.

I think it must be common.

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Countless. My heart stops regularly (but don't worry, it starts up all on it's own!), seizures, visual perception problems, chronic fatigue, gluten exhausts me and dairy makes me cry. So many more. No answers.

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I had random abdominal pains for a year.  Significant enough that my doctor ordered several imaging tests and never really had an explanation. A year later my appendix ruptured and the pains went away. I think it was an ebb/flow of appendix inflammation.  The doctor say my appendix was fine on my tests, so that couldn't be the problem.  My thought was that it would inflame and then go back to normal and the imaging tests happened to be done on normal days. 

My chronic back pain.  I have 2 blown out disks in my back. The thing that confuses my doctors is that the pain in my back and leg, is predominately on the opposite side from the injury. Different doctors have told me that if they operated, they think they may find out that the injury on the inside may be different that the imaging shows.  Again..I think it has to do with inflammation, swelling and resulting pressure on nerves.  The injury may cause the inflammation, but I think the inflammation extends beyond the injury.

DD19 is in chronic pain. She has had extensive imaging and treatments. Multiple highly regarded specialists and her medical profile has been presented to panels of doctors.  No one can find a source of her pain. She can manage most of her pain by avoiding nightshades, and the inflammation they cause. LOL hmmmmmm sensing a theme here!!

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Yes, it's happened to me three times. The first time (chronic pelvic pain), I got an answer only after about three years; the cure was so simple, I couldn't believe it (nor could I believe no-one had suggested it!)

The second time I had ongoing neuro symptoms no neurologist could pinpoint for - oh - five years ? One day I woke up and the symptoms were gone. 

The third time I had chronic leg pain for about two years - same - one day it went. Again, no explanation of why, no idea why it stopped. 

So it's possible I'm just very neurotic, and experience that through somatic symptoms, or that I just get weird stuff. I did go two years without a diagnosis of a disease they mostly see in farmers (I don't farm, didn't grow up on a farm) so it's possible just weirdness.

 

 

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So many times. And I don't even have serious medical issues overall.

The worst is when doctors aren't just like, we're sorry, we don't have all the answers, but instead try to make out like you're crazy.

I'm currently planning to die of medical neglect one day.

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49 minutes ago, Tap said:

My chronic back pain.  I have 2 blown out disks in my back. The thing that confuses my doctors is that the pain in my back and leg, is predominately on the opposite side from the injury. Different doctors have told me that if they operated, they think they may find out that the injury on the inside may be different that the imaging shows.  Again..I think it has to do with inflammation, swelling and resulting pressure on nerves.  The injury may cause the inflammation, but I think the inflammation extends beyond the injury.

 

 

I have two bones fused together on the right iliac side; my chiropractor was not surprised at all that all my symptoms are on the left side / left leg though. He said this was common with back issues.

I will be dealing with those silly fused bones to the end of my days but with good chiro care and a massage now and then as well as some home exercises, I can manage so far. There have been days when it was debilitating. I cannot imagine two blown discs...hugs. If inflammation is the issue, have you tried systemic enzymes (not digestive ones) - they help me some.

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Yes.  Interestingly enough I didn't know I had  it until one day my acupuncturist asked me about it.

I was having back / left side pain after DS2 was born.  It went on for a few years and I finally went to an amazing acupuncturist (who was suggested to me by my OBGYN when my DS2 was breached).  After a few sessions she pressed on my leg and asked - does this hurt?  And then she kept pressing at various places around my body and kept asking.  And I kept saying "yes".  She probably would have "cured" me, but for a few reasons I couldn't keep going to her consistently.  This was...4-5 yrs ago...

So, I don't feel the pain unless I press on a body part.  I am hoping that if I loose the weight, reduce stress and get better sleep it will go away.  My PCP somewhat agrees.

I am not willing to do any testing or anything else.  So, that's that 

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31 minutes ago, Farrar said:

So many times. And I don't even have serious medical issues overall.

The worst is when doctors aren't just like, we're sorry, we don't have all the answers, but instead try to make out like you're crazy.

I'm currently planning to die of medical neglect one day.

 

Sadly, this may be the route to go. And you may fare better and live longer than those who are "under a physician's care." Reminds me of a book called "Death by modern medicine."

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Too many times.  I think there are three main type of doctor. 

1.  The amazing but exceedingly rare doctor that has answers.

2.   The honest doctor who admits not knowing.

3.   The arrogant doctor who insists his crazy nonsensical theory is absolutely correct.  

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I eat 25-30% more calories than I'm supposed to without gaining weight. Thyroid is normal. Everything is normal. I only mention this because whenever I read about people insisting they really, truly aren't eating that much... I find I believe them. Maybe I'm naive, but I eat so freaking much. I have a sedentary job. I probably eat 2000+ calories per day on average, and have a BMI that hovers between 8.5 and 9. I drink alcohol and do not follow any crazy diets or drink lemon and cayenne juice unless it's with tequila.

The doctors say I am not able to count calories.

I have a kitchen scale from my bread baking and breastfeeding days. I know what I eat.

This came up when I was attempting to gain weight during pregnancy and I had to keep a food journal. The advice, prior to weighing, was "cut out the doughnuts". I said "okay," lying, because i knew myself. I had lost 2 lbs in a week. MORE DOUGHNUTS. I don't understand this but what I have learned is that actually doctors and medical science has absolutely no idea what makes people skinny, medium or fat and their advice is mainly a reading summary and has nothing to do with critical thinking or even observation or listening.

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still trying to figure it out.  part of it is, the "not a seizure", muscles cramping tighter and tighter. it's getting worse over the months since it started with no answers. things that "should have helped" - make it worse. activity triggers it.  potassium/electrolytes seem to help - but dont' stop it.  (one day I drank two liters of coconut water - and I felt better.  one liter wasn't enough. that gets expensive really fast.)   I had three today.   dudeling has never seen me have them - that it registered with him.  it really disconcerted him.  it even disconcerted 1ds who witnessed it - and his gf has epilepsy.

I was up in the middle of the night and ate - so I had to go back this afternoon for fasting blood work.  I don't want to put this off when my dr is leaving town next week.   I'm glad I was having an episode during my blood draw - I really hope whatever is going on is more likely to show up in blood work.

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3 hours ago, StellaM said:

Yes, it's happened to me three times. The first time (chronic pelvic pain), I got an answer only after about three years; the cure was so simple, I couldn't believe it (nor could I believe no-one had suggested it!)

The second time I had ongoing neuro symptoms no neurologist could pinpoint for - oh - five years ? One day I woke up and the symptoms were gone. 

The third time I had chronic leg pain for about two years - same - one day it went. Again, no explanation of why, no idea why it stopped. 

So it's possible I'm just very neurotic, and experience that through somatic symptoms, or that I just get weird stuff. I did go two years without a diagnosis of a disease they mostly see in farmers (I don't farm, didn't grow up on a farm) so it's possible just weirdness.

 

 

had something similar with 1ds.  he couldn't keep a teaspoon of water down and was in tremendous pain.   it would last for several days, then he'd be fine.  until the next time a few months later.  these episodes got worse with each one.   lots of tests, neurologists (his ped consulted with the medical school neurology dept - they were stumped.), children's hospital, IV's for hydration, IM narcotics for pain relief, beta blockers,  . . . . ..

I saw a chiro - "oh, did he fall?" . . . uh, 18' out of a tree.   he showed me the fracture on the x-ray taken by a previous allopathic dr.  they had all ignored the healed fracture. . . . .except, it was pinching a nerve.  the pressure would build and then release.   cycling through.  as long as he had spinal adjustments to keep ahead of it while he grew - he was fine.  no more ER's, no more tests, no more pain, no more everything else.  it was over - just like that.

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6 hours ago, StellaM said:

 

So it's possible I'm just very neurotic, and experience that through somatic symptoms

 

 

 

I've had a few relatively minor but never explained health issues over the years. And yes, I absolutely know that for me there's sometimes a very strong psychological aspect to it.  Whenever something weird's going on I try to suss out if anxiety/stress could be the cause of it or at least contributing factors. But if it matters note I also firmly believe in the placebo and nocebo effects. Our brains are awesome things, and what's going on up there does indeed affect the rest of our body. I've seen it happen not only with myself but with lots of other people, both in a good and a bad way (the good way being that I've seen quite a few people handle horrible medical conditions as barely a blip in their lives).

Note I'm not saying this is everyone's problem or anyone else's problem or always the problem. But I do know it's a thing.

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I've always had knee issues, since I was a teenager.  In my early 20s, I had a particularly painful "knee went out for no reason" incident and went to the ER. The doctor SHOWED ME the x-rays and pointed out the bright white spots that indicated arthritis.  I got busy with kids and life and just continued living with intermittent pain.

Fast forward to my mid to late 30s, and I have another bad period, and finally drag myself to an orthopedist. My x-rays and MRI come back perfectly clean.

Still no official diagnosis for what causes me pain.  It's not daily, thank goodness.  Regular exercise (specifically strengthening my leg muscles) does keep it under control, but I don't always exercise regularly. 

I've also had a fibro diagnosis, but I haven't had those issues in years. No real idea what was going on there.

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Yes!  Really, whenI go into a doctor's office they think I am quite healthy because I am not overweight and not on medication.  I have had a physical problem for almost 30 years which I mostly control.  I have never heard of anyone else with this problem and doctors have no idea what I'm talking about and think it's something I invented.

I think doctors work best with overweight white males who smoke and drink.  Sorry for the cynicism.

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Yes, I have some kind of autoimmune issue but nobody has ever been able to figure out exactly what it is.  After years of tests, I've pretty much stopped going to doctors. The only time I've seen a doctor in the past 11 years was when I broke and severely sprained my hypermobile ankle (again).

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Yeah. I'm at the point where unless I'm bleeding out, I take a couple Advil and ignore it. Or just ignore it, if it doesn't involve pain. 

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10 hours ago, Liz CA said:

 

I have two bones fused together on the right iliac side; my chiropractor was not surprised at all that all my symptoms are on the left side / left leg though. He said this was common with back issues.

I will be dealing with those silly fused bones to the end of my days but with good chiro care and a massage now and then as well as some home exercises, I can manage so far. There have been days when it was debilitating. I cannot imagine two blown discs...hugs. If inflammation is the issue, have you tried systemic enzymes (not digestive ones) - they help me some.

I agree! But this is nerve pain that is rooted from the injury site.  Opposite side pain is typically from compensation  for the injury (or from how we change how we move due to injury). One of my doctors is the head of neurosurgery at OHSU. Even my chiro has no idea why my pain presents like it does.  It is really baffling.  It would be the equivalent of having a fracture in your ring finger with virtually no pain, but having sharp pain in your pinky finger in the exact same spot with no sign of injury.  

 

I haven't tried systemic enzymes. I do chiro and massage as I need it and avoid nightshades to keep my inflammation down. I have done probably 5 years of PT. Doctors say surgery will make me worse, so I am avoiding it for now. I see so many people with fused disks who continue to get worse and require more and more fusions to compensate. Hugs back to you! It can be quite miserable to live a life in pain.

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12 hours ago, 6packofun said:

I'm curious about how many people have had any sort of health issue--whether discomfort/pain or anything at all that concerned you enough to seek medical advice about it--BUT never got a conclusive answer to a cause or cure.  Please share your experience!  How long did the issue last and is it still occurring or did it resolve somehow? 

We're now two years into me starting to lose my legs.  Everyone agrees I'm going to be paralyzed but no one knows why or how long.  The theories are motor neuron disease, stiff person syndrome - limb variant, and Lyme Disease.  One is a Lyme doc, one is university/research doc specializing in neuromuscular, and the other is Mayo's neurology - a stiff person/ auto-immune neuro specialist.

So, at the last Mayo appointment they decided to double down on IVIG, admitted it might not be SPS and haven't seen a case like me, and decided to run some kind of specialized test that will tell us definitively if this is or is not SPS.  Should know in the next month or so.

I asked God to teach me patience - eleven kids didn't do it.  This is getting there.

The truth is - science, despite our glorification and worship of it, is a very imperfect science.  Not having the answers is not reflective of the competence of my medical caregivers.  It is only reflective of the fact that we are very temporary and our hope better not be tied up in our health.  (((Hugs)))

 

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Oh yes.   Now I just live with some things because I’ve given up on finding a cause for it.   And in my case, it’s not because of bad medical care.  My GP is phenomenal.  She is just wonderful and looks after me so well, but I’ve only been with her for 2 yrs.  after so many years of no answers, I don’t even bother bringing things up unless it’s just unbearable.  

And someone above mentioned that women get the short end of the stick wrt medical care.  I totally agree with that.  For years and years I saw male doctors.  It’s only since I’ve been seeing a female GP that I’m finally being treated for things that I’ve dealt with for years.  She treats me and takes me seriously, whereas most male doctors wrote me off.  (Except for my gyno who was probably the first dr to finally listen to me in many years.  And he’s a man who actually had sympathy for my female issues!)

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I almost think it is more common than not.  When you look into things further, even when there is a surface explanation, often we don't really know why it happened.

I have an issue with recurrent UTIs that has never really been explained.  As I understand it, there is a lot that is unknown around this problem.

 

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8 minutes ago, BlsdMama said:



The truth is - science, despite our glorification and worship of it, is a very imperfect science.  Not having the answers is not reflective of the competence of my medical caregivers.  It is only reflective of the fact that we are very temporary and our hope better not be tied up in our health.  (((Hugs)))

 

Yes. Even today there is more unknown about the human body than known.   Of course doctors are going to be able to handle the textbook cases and are going to have trouble with the nontextbook cases like me and many others. I actually dread the old “what kind of pain is it question “. “Is it shooting?  Burning?  Cramping? Stabbing?  Muscle?  Nerve? Bone?...”. My answer is “yes” and what can the doctors do with that?  

I am at the point where I have a “team” of doctors. They don’t actually work together though they know that I see the others and will ask what another recommends or thinks on occasion. I know the strengths and weaknesses of each doctor-both as part of their training and personality.  I don’t expect them to go beyond what they are capable of. All are excellent in what they were trained to do but they aren’t Superman. 

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44 minutes ago, mellifera33 said:

Yeah. I'm at the point where unless I'm bleeding out, I take a couple Advil and ignore it. Or just ignore it, if it doesn't involve pain. 

So. True.

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13 hours ago, Arctic Mama said:

Plenty.  I’m still trying to figure it out.

 

Honestly?  My experience with the medical profession is that it is rare when they can actually help anything that isn’t an acute injury or one of a handful of common conditions.  Otherwise it’s just a ton of tests and guesswork and precious few answers.

This.  About 8 years ago I had severe inflammation in my eye. It destroyed a bit of my iris and went on for months. I had as my doctor one of the top retinologists and she had no idea. At one appointment, she just sat there with a big book, paging through it and trying to figure out what was wrong with me. It clears up in about 4 months. Her best guess was that it was a virus that attacked my iris.

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Me. Leg issues - random falling, tendon and nerve pain in the ankles, inability to walk, difficulty going up stairs - but it's intermittent. I'll have a few really bad days and then a block of great/good days. It's frustrating because I 'fail' all tests - MS, MLA, fibro - or they won't do the test (Lyme). I have had tick bites with rashes as well as a spider bite (that, even after three years) is still raw and develops occasional drainage. I'm told that unless I want a medication like Lyrica there is nothing they can do because I have failed all the tests. So, I wait until I fall again and fake it through the days at work when my pain is nearing intolerable. DH and I are planning on buying a ranch house in the next few years anticipating a decrease in my ability to maneuver stairs.

My other issue is that no matter how much I exercise or diet, I cannot lose weight. The family joke is that I would be the only person to go on Naked and Afraid or Alone and gain weight due to starvation and malnutrition. This bothers me more than randomly falling in Walmart. At least I can blame that on a 'slick spot' or a puddle. Not being able to lose weight or randomly gaining 5 pounds is infuriating because I really, honestly try. Even my WW coach is surprised. I track every bite and use a Fitbit to monitor exercise and I should be losing weight. But, I'm not. 

I am gluten and dairy free due to chronic digestive issues. Best decision ever (well, next to a medically necessary breast reduction ?)

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13 hours ago, Farrar said:

So many times. And I don't even have serious medical issues overall.

The worst is when doctors aren't just like, we're sorry, we don't have all the answers, but instead try to make out like you're crazy.

I'm currently planning to die of medical neglect one day.

Me too! And I don't even tell them the "really crazy" stuff. If they don't believe something straightforward like, "my blood pressure ping-pongs all over the map--all day, every day," they sure aren't going to believe the rest. 

As to the OP's question, I have a lot of food sensitivities and general symptoms of nutrient deficiencies, but they don't stay pinned down neatly all the time (except for a few like gluten, tomatoes, peppers, gelatin, etc.). The nutrient deficiences are wild and perhaps not even deficiencies so much as an over-need. I once had a months-long craving for brazil nuts (high in selenium), and eating them would literally make me extremely happy and calm. Eating gluten does exactly the opposite--just put me in a straight jacket if I eat gluten. I am currently going through a potassium binge, which helps everything from weird sensations like my legs are going to start twitching (but they don't) to bladder spasms, fluid retention, and heart palpitations 

There is a family history of nutrient deficiences that are unexplained from both sides of the family--pernicious anemia, non-diabetic neuropathy that was cured by magnesium supplementation, etc. 

13 hours ago, hellen said:

Too many times.  I think there are three main type of doctor. 

1.  The amazing but exceedingly rare doctor that has answers.

2.   The honest doctor who admits not knowing.

3.   The arrogant doctor who insists his crazy nonsensical theory is absolutely correct.  

My experience is that alternative practitioners are often of the same set of personalities and respond much the same, but coming from the other side of the coin, lol! 

12 hours ago, Tsuga said:

This came up when I was attempting to gain weight during pregnancy and I had to keep a food journal. The advice, prior to weighing, was "cut out the doughnuts". I said "okay," lying, because i knew myself. I had lost 2 lbs in a week. MORE DOUGHNUTS. I don't understand this but what I have learned is that actually doctors and medical science has absolutely no idea what makes people skinny, medium or fat and their advice is mainly a reading summary and has nothing to do with critical thinking or even observation or listening.

1

I wasn't in the category of not gaining enough weight during pregnancy because I was overweight before pregnancy, but my body acted this way throughout my entire second pregnancy. I would eat non-stop for days, but I would be down sometimes as much as 9 pounds at a visit! Nearly all of my pregnancy weight game came as water weight that came on overnight as a result of pre-eclampsia (which the doctor refused to diagnose because it wasn't bad enough--subsequent revision of the criteria shows I would be diagnosed now if the doctor was up-to-date). 

During my first pregnancy, I spilled sugar in my urine regularly and endured nasty mocking from the nurses who said I must be eating cake for breakfast. I didn't have GD, and I didn't eat cake for breakfast. Ironically, my body regulated my weight perfectly during that pregnancy, and I actually had not only hunger cues, but I would feel satisfied after eating, which is not something I typically experience (my cues are seriously mixed up while not pregnant). 

My ability to notice obscure symptoms and put information together did end up useful to my son--he was diagnosed with a rare disorder because I caught it. Amazingly, his specialists gave me a great big "Way to go, Mom," which is probably the first and last time I'll ever have a doctor validate me that way, lol! Well, okay, my allergist (now retired) did honor my body cues after proven true (I was still learning them, so I was coming to her AFTER solving problems that came up), but she basically indicated that if anyone else came to her with that information, she'd think they were nuts. 

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A lot of times, it's not even that worthwhile to run tests and such.  Because no one really knows what the results mean, or what to do about them.  In general I feel like I just accept that I don't always seem to be in full working order, and only see a doctor when I absolutely need a result.

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I have several.

Hypopituitary - I don't have a tumor. I didn't have a head injury. No one knows why.

Fast heartbeat - no idea why - it developed when I was around 40.

Recurrent gastritis - all tests come back normal. Gallbladder looks normal.

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Nothing long-term, fortunately.

However, my only trip ever to an emergency room resulted in their running $10k in tests, ruling out anything life-threatening, making up a patently BS diagnosis and sending me home because I was starting to feel better. (DH immediately came down with the same thing. His doctor, even given my test results and two or three visits because he stayed ill for a week, couldn't diagnose him either. Two different hospital systems.)

I've given up on expecting an accurate diagnosis and treatment in one visit to my GP, but I hardly ever get sick so it's not that big a deal. I've just concluded that doctors are highly paid bad guessers. DS's ped is mostly an exception, spotting things that might've gone by unnoticed but needed care.

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Three issues - doctors told me to exercise more and eat healthy. I already do that! I am vegetarian and one main meal a day is mostly salad and I eat very little carb and no processed food. 

For one of the issues that I had, I googled it a lot for several months, read a lot of forums, asked questions to people who had the same issues, got some detailed answers which were very educational to me, read up a lot on the condition and went back to the doctor who did the tests that I requested very reluctantly and the tests came up positive. So, my googling was the answer to my one issue and my doctor who is highly qualified did not even consider the possibility. As for my other unexplained issues, I still have them and deal with them (still googling the symptoms on a weekly basis!).

BTW when I had the symptoms and went to the doctor and I was told to exercise more and eat healthy, the visit was not covered by my insurance because I did not have any extenuating circumstances for an office visit.

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