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Thyroid Disorders Community
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214544 tn?1201150990

A PAINFUL JOURNEY

I've read through my medical records and discovered things that were never told to me from the tests that I've had done.  
Why or how do doctors assume that these things that they never tell are nonessential?
Here's my situation:
I've sufferred from HSV-2 for 22 years, supposed unrelated to everything else you are about to read.
First I experienced periodic severe stabbing pain in my RUQ abdomen and then I displayed chronic alternating diarrhea and constipation with severe abdominal cramping along with the first symptom.
I had every GI test and no diagnosis until two years, two surgeries, numerous doctors and tests later when I finally ended up in the ER and was diagnosed with IBS.
Meds for the IBS didn't help my diarrhea/constipation from alternating, nor prevent the sharp stabbing RUQ abdominal pains which had become more frequent and lasting longer.
I was also diagnosed with 3 herniated cervical, 3 thoracic and 2 lumbar discs, which meds and physical therapy didn't help any of my symptoms.
During this process, I began to have additional symptoms:
dizziness, migranes, tremors, slurred speech, memory problems, comprehension, word recall, difficulty paying attention, heat and cold sensitivity, shocking sensations when tilting my chin down toward my chest, extreme fatigue, difficulty walking, balance, pain shooting down arms and legs, numbness and swelling of hands and feet, facial swelling, stabbing eye pain and floaters, muscle aches-spasms-weakness and morning stiffness, nausea and vomiting, ringing in my ears, severe back, neck and leg pain, bowel and bladder disfunctions, insomnia, weight gain, difficulty breathing while sleeping, lump in my throat, temporary right side paralysis, temporary neck down paralysis.
There have been so many that I have to write each new one down to keep a record of them.
Currently my main symptoms are extreme pain and ache all over especially my back and legs at night, severe swelling of my hands, feet and face and stiffness in the morning, daytime fatigue w/o sleep but night time insomnia due to pain, weakness, hoarse voice, uncontrollable irritability, battling depression, abdominal swelling after eating a small dinner my one and only meal due to pain and yet still gaining weight while on phentermine.
I've had almost every test possible done including thyroid with the exception of an LP which was never performed.
I've been diagnosed with Fibromyalgia and have been taking Lryica, Zanaflex, and Tramadol while being weaned off of Gabapentin and have had no relief of my symptoms yet.
I've seen:
(3 family practice doctors/2 neurosurgeons/2 neurologists/1 orthopedic surgeon/1 Physical Therapist/2 Pain clinics/1 allergist/1 GI/1 General Surgeon/2 Urologist/3 Gynecologists/1 cardiologist)
Had tests done at 5 different hospitals and tests included:
x-rays, ct scans, abdominal and renal ultrasound, MRI's, ekg, emg, evok potential, nerve conduction study, liver function, colonoscopy, endoscopy, upper/lower gi, barium enema, thyroid, sugar, lyme disease, numerous blood tests,  and so many other tests that I can't remember them all and I forgot to write them down, but they checked every organ, my muscles, nerves, bones, blood, skin and they did exploratory surgery,  kidney surgery and two Epidural Steroid Injections which didn't help with the pain, but made it worse.
The pain becomes a little more intense every week, medicine doesn't help and I'm not even comfortable with the Fibro diagnosis.
Do doctors ever really know what they are dealing with when they diagnose people with Fibro?
Does anyone have any other suggestions or questions that could help determine a possible solution or some assistance with the pain, other than Lyme disease information?
I'm scheduled for two more final tests next week.
A Breathing test and a thyroid ultrasound.
I posted this on the undiagnosed symptoms forum already and only received responses from one person.
Please advise anyone you may know that has had similar symptoms to post their solution if any.
I'm also curious if other people are noticing the difficulty out there in getting a prompt or accurate diagnosis, medications that work and if they are also finding information in their medical records that was never disclosed
to them by a doctor.  
Are there new illnesses on the rise that were not being informed about?
Why isn't HSV-2 called an autoimmune disease, can it affect the immune system?
Is HSV-2 the root of all my problems, since it rests in the CNS?
Do my symptoms and test results determine Fibro without an LP done to rule out an autoimmune like MS?
Are there any other possible solutions or tests?

Thank you for taking the time to read about my painful journey and I only hope that someone can shed some light on this and help me determine what's going on.
5 Responses
168348 tn?1379360675
I feel so bad for you having so much pain w/o concrete answers to help it .. only thing that comes to mind is whether they have checked your metal's level i.e., mercury, and/or level of whatever they call it if exposed to mouse droppings?

Cheryl
312144 tn?1262230591
312144 tn?1262230591
Hello there, I too feel sad as I read your painful journey.  I am new here, and, have had some of your symptoms (ringing in ears, hoarse voice, difficult swallowing).  I am glad that you are having a thyroid ultrasound for that is how I found out, after three years, what was wrong with me.  My Thyroid numbers were always normal, but I had eight nodules on my thyroid gland which they found in a CT Scan of the CHEST.  THEN they did the thyroid ultrasound.  I hope and pray that you find relief soon.  
214544 tn?1201150990
I don't believe either of those have been checked and I will add these to my list to take to the doctor.  Thank you for the info!
214544 tn?1201150990
I had the ct-scan which didn't show anything, but hopefully the thyroid ultrasound will help.  Thanks for confirming my feeling about the possibility for a false negative blood test.  I thought this was possible and feel this is my thyroid is definately a factor in these symptoms.  Thank you for letting me know.
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