Forums June 21, 2010 - What to Know about Self-Diagnosing You Know Your Body Better Than Your Doctor

You Know Your Body Better Than Your Doctor

Subscribe to You Know Your Body Better Than Your Doctor 10 posts, 8 voices


Icon_missing_medium kitteagirl 41 posts

I was diagnosed with chronic fatigue/fibromyalgia 25 years ago, and it has totally ruined my life. I am self-supporting, and most of the time I just lie on the couch so exhausted that getting up to get the mail or go to the supermarket is something I have to plan for in advance. I can barely work part-time and can barely support myself. I have seen numerous physicians and have been had every test in the book. They just say I have chronic fatigue/fibromyalgia, learn to live with it, and maybe you should see a psychiatrist! Finally, I self-diagnosed myself with pernicious anemia after requesting my lab results, going on line and reviewing all my lab results. My mother has pernicious anemia. I was always told that my B-12 level was normal. I guess the doctor considered my 278 lab normal, even though 270 was abnormal! I got one doctor to give me one B-12 injection and felt somewhat better. I ordered my own B-12 injection kit on-line, and for the first time in 25 years I’m beginning to feel alive again. I am going to see another specialist and tell him my story, because there is more than one cause of pernicious anemia. I guess some doctors can’t add 1 + 1 together to come up with 2! We know our bodies better than our doctors. Doctors need to look at the total picture, and doctors need to LISTEN to their patients. They also need to think outside of the box. If they don’t have the answer, they should admit it, rather than telling the patient that they need a psychiatrist.

Me2_medium lamc1139 1 post

I know the feeling. The Doctor that I had been seeing told me he thought that I had beginning stages of fibromyalgia. I was injured nov 2005. Sterno-Clavicalar injury. said were trying me on prozac for the Anxiety, Depression,Pain, fibromyalgia. after 6 moths it stopped working, tried me on Celexa, same ofter 6 months quit working!I am also Hypothyroid. Type 2 dibetic, Have trouble slppeing, pain keeps me up! I am so frustrated! This doctor office close to home. But I am going to LSU medical center to see if anyone there can help me. I have no insurance, Can not work, Disibility applied for but heard nothing since the hearing in Feb! Hormones going wild, night sweats, panic attacks, I ready to scream.

Icon_missing_medium kitteagirl 41 posts

Iamc1139, have your doctor check you for Hashimoto’s thyroiditis. There was a program on that “Mystery Conditions” show where a lady was told she had fibromyalgia and she had some low thyroid function tests. Finally, she found a really good endocrinologist who said she had Hashimoto’s thyroiditis. Look it up on WebMd. The symptoms are very similar fibromyalgia/chronic fatigue. Also…Milly…you were right about Lyme’s. I have had suspicious Lyme’s tests also and am seeing both an endocrinologist and an infectious disease doc this week. Even though I have pernicious anemia, there can always be more than one thing going on.

052_medium stkatesgirl 32 posts

I first want to say I am glad you got your answer! For me it was the same way! I broke bones really easily, my joints popped out of place and no one knew why… I was really flexible and with the little trauma I swelled tremendously. Eventually I was diagnosed with a type of Connective tissue disorder, called Osteogenesis Imperfecta. They still aren’t sure if that is what is completely causing my bones to break so easily but at least they have stopped telling me it was all in my head. Now when a break happens, the docs look at me and say does it feel broken? If yes it automatically gets casted no matter what they x-rays show because OI patients can have microscopic breaks that don’t show on x-ray but if not treated properly can spread further. It has taken a lot but now the docs know that I know… I know my body and the docs that I have now respect that. They know that I know it better than they do and they use that to their advantage.

Icon_missing_medium amyinwisconsin 2 posts

I just saw the post by 1sunshine here, just after I posted under the same episode. The doctor totally blew off her symptoms. I have POTS as well as other issues, but clearly the doctor didn’t do a thorough exam. I think because she “self-diagnosed” the doctor was trying to show she was more of a hypocondriac. Very disappointing!

Icon_missing_medium TinaKling 1 post

A couple years ago I wrecked my car really bad. I completely shattered my ankle and my husband had to plead with the hospital not to amputate it. I know have arthritis in my leg for sure but can feel the aches everywhere. I know I have something really wrong with me in my abdomin and constant headaches in my eyes to… I have had one exploritory surgery by my OB and she couldnt find any sign of endo. or anything else. I am so frustrated I dont know what to do. I am only 26 with 2 small children. How do I not come across to a dr as just wanting the attention or whatever they call it? I am in real pain and its affecting everything from my family to just being me.

Cooter_winter_08-09_medium Cooter 158 posts

So how are you?


Just FYI

The lyme tests have a lot of problems, political and medical. 

You would likely feel a little better if you took vita B if you had lyme.  I wonder if kitteagirl may have both anemia and lyme.

POTS is a symptom of lyme – stopped my heart.  I no longer have symptoms with lyme treatment.


TinaKing – check out “central pain syndrom”.  Also lyme takes advantage of stress, a car accident and injury recovery is stress.  Lyme may have been there when you had the car accident…  Just a thought.


I have links and lyme info from my experience with lyme on my profile – just click ‘Cooter’ anywhere its in blue.

Icon_missing_medium nomohays 4 posts

Body aches, joint pain, fatigue, hair loss, high BP, headaches, hair loss, kidney stone, dental problems, permanent kidney problems, tested for lymes, arthritis, thyroid, lupus. GP gave me meds for depression really made me mad. Self diagnosed Primary Hyperparathyroidism, finally got a GP to run a PTH test along with 3rd or 4th test for the above conditions. (refused to do others unless she ordered the PTH refused to take pain med and anti depressants) Told her I wanted to know what was wrong with me not mask the symptoms. All tests normal except PTH. Still took me a year and a half and several Docs until I found one who would take the adenoma out. 15 minute procedure the parathyroid is supposed to be the size of a grain of rice mine was as big as my thumb. I knew for years something was wrong. I found a blood test that was sent to my home that had a high Calcium reading and went on line and found It saved my life. Yes you have to check out your sources, but don’t let a docter brush you off. MAKE SURE THAT YOU GET A COPY OF EVERY TEST. I went back 10 years and found all of the signs were in my blood work the whole time! Fight for your health, you are the only one who will lose if you don’t. It is amazing getting out of bed in the morning and not hurting. I have damage that is permanent, but at least it won’t still be compounding.

25417_1391233067946_1445709752_31066839_3112162_n_medium kimerann 1 post

My Hubby and I used the internet after he had been to 3 specialists to discover why his extremities were going numb. It started with the left arm and hand. We explored chiropractic and that didn’t help. In the meantime his right arm and feet had gone numb. This is kind of scary for a man who since 2006 had had his colon removed and 1/2 of his stomach. We went to his regular Dr. who refered him to a spinal specialist. The spinal specialist did MRI and X-Rays and decided the normal spinal stenosis for his age would not cause this problem. He then set my hubby up for nerve testing. I have to tell you that is a form of torture that is just awful. The results of those tests showed the nerves were all doing what they should and would not cause the problem. Now his was refered to a Nueroligist. Since it takes time to see any specialist the appt. was set for 1 month out, we decided to do some on-line research. We discovered that B-12 is one of the main things for nerve function. I went out and got some B-12 supplements (under the tongue). He took the supps for aprox a month while we waited. Finally got in to see the Neuroligist. He is asking ?‘s and we said we had been on-line ( he said ah yes isn’t the internet a wonderful thing) we then asked about B-12. Could his medical issues cause this problem? He says " well yes.. without his colon and only 1/2 of his stomach the body has trouble pulling nutrient from foods. FINALLY someone calls for a bllod test. GUESS WHAT?? Even taking B-12 supplements for a month he barely registered since his B-12 was so low. Needless to say his feet and right hand have all come back to life and we are now looking into a little spinal roto rootering to take care of left one. Make sure you point out to the first Doctor you see for something like this. Remind them if you are missing parts that might cause trouble. We did these Dr. visits for a year before the bllod test…

Cooter_winter_08-09_medium Cooter 158 posts

nomohays -


What did you take?!  Your words:  “meds for depression really made me mad”, caught my attention hard.  Before being diagnosed w/ lyme (clinically by symptom presentation and successful treatment),  I had a top neurologist thinking I had sleep issues.  He prescribed nortriptiline (small doses – under 20 mgs to start) hoping the nortrip would improve my sleep over the next week. 


Instead of gradual improvement with my symptoms over the next week, what happened is: an hour after my first dose, I lost all of my phantom pains (parathesias).  I was having severe neurological pain, sleep was impossible.  But the reason your words caught me hard was:  as I adjusted my dose up, to keep up with my body getting used to the drug, I got to a point where I became very easy to emotionally irritate.  This response happened within the first hours of a “too high” dose.  I also have found, I’ll get this same reaction when I going off some of my herbals too quickly.


I am still taking lyme treatments.  I found a dose of the nortrip I was comfortable with both physically and emotionally and eventually the nortrip resolved all my phantom neurological pain (parathesias) and the neurologically pain hasn’t been back since.  Soon after the nortrip attempt to address my issues, I was diagnosed with lyme.  I have been taking lyme treatments, both western anti-biotic and herbal, for years now and continue to improve cognitively and physically.  I disagree, vehemently, with Dr. Stork’s statement:  “There is no proof for [years of lyme treatment].”  My experience, and those of others I know, doesn’t support his confident, assured statement.


I am, at least, one small data point, Dr. Stork.  And I know of others.  Sorry, there are no “slam dunks” on lyme.  Lyme is way too good at what it does: hiding, attacking undetected, and invisibility.  In fact, I think Lyme probably spends a hours upon hours, playing those online war games.  Lyme is invisible in every sense of the word – diagnostically, socially, and politically.



On another note – I am completely unfamiliar with thyroid issues, but I have come across info that suggests those who seek acupuncture treatments do well.  I have been told an acupuncturist will take a more holistic approach than western medicine, addressing the adrenals, rather than the thyroid directly.  Hope that helps in some way or something.

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Forums June 21, 2010 - What to Know about Self-Diagnosing You Know Your Body Better Than Your Doctor



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