Discussions By Condition: Medical Stories

If this helps one person, symptoms were numbness and pain (among others)

Posted In: Medical Stories 0 Replies
  • Posted By: Anonymous
  • July 13, 2009
  • 11:59 PM

I've never actually posted in a forum before, but after reading some of the information on this website I was compelled to. I will try to share my story as briefly as possible in the hopes that someone can be helped to save the time, and money that I had to go through.
My symptoms were:
-Severe pain in my right lower back (almost constant)
-Numbness in my hands and feet, like sleeves and socks
-Forgetfullness, beyond forgetting where I put my keys. Distinctly it became most noticeable to me on a graduate school exam where I went completely blank. The best way to describe it was knowing I knew the answers but being unable to find the words to express it, and honestly even that isn't the best way because there was a fear attached to it.
-Exhaustion, over the course of three years I went from working three part time university jobs and carrying a full course load, to taking one class and barely being able to hold one job. I literally could not get out of bed at times and always felt sluggish and slow.
-I started to lose my hair, and my weight was fluctuating as much as 15 pounds up and then back down within a month, without a change in diet.

The eventual diagnosis was both a thyroid diesase called Hashimoto's (also can be referredto as hypothyroidism) and a B12 defiecncy. The pain they never have been able to figure, finally calling it fybromyalgia, although those medications do not really seem to help. The important part of my message though is that the thyroid and B12 should not take almost four years to diagnose if you have good doctors and ask questions. (although you will start feeling seriously ill) Please make sure your doctors are sending ALL of your records to one another, even the bloodwork that does not show any problems. IF my "specialists" had ever referenced the records from my family doctor they would have known about the thyroid problem almost immediately since he had run that particular test on me ten years previously when he first became my primary care physician. A "normal" thyroid level is supposedly between 1 and 7, however if you your normal is a 1 and you don't know it they will keep telling you your thyroid is normal until it's over 7 this is problem. Therefore, it is just as important to have these tests done when you feel nothing is wrong so that you have a baseline that things can be compared to.
I was misdiagnosed with MS, Lupus and several other neurological diseases. Until finally the Dr's through up their hands and had to admit they just did not know, and couldn't fix it. At one point I was on 15 different medications since they were trying to medicate the symptoms away and diagnose me that way. I was praying that this was all in my head so that maybe then I could "fix" it, so I consulted a psychiatrist.
It was a horrific journey that I would wish on no one and can only advise this for anyone, with any problem:
-Please remember that YOU are in control of your medical care, not the doctors.
-You have the right to ask questions, and receive answers, no questions are irrelevant or stupid.
-Write a list of symptoms, questions, anything you deem important so that you don't forget when you see your doctor.
-Ask what medications are for, why that particular medication for you from that particular class of drugs.
-Do not ever let a doctor imtimidate you or make you feel bad, or stupid.
It is their job to help you.
-Remember you can look at your test results, Xrays, MRI's etc. and have them explain things to you. Do research from reputable resources to try and be as informed as you can about what you are being told. Knowledge is power.
Ok, there's my novel, sorry. If you have any questions I will check back and try to answer them. I am not a doctor, or an expert, I can only share my experiences and offer support.

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