Oct 24, 2007
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.
(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.
I've posted this on numerous forums in hopes that someone in one of the areas can help me.
I've also decided to keep this journal to post updates in.
I'm scheduled for my breathing test tomorrow.
I don't feel that this test will serve any purpose, as was a tilt table test I had done.
When I had asked my cardiologist why I had a tilt table test done, he stated to rule out
dehydration for the dizziness. The funny thing is, we had this conversation prior to the
test and I told him then that I was not dehydrated. I'd been drinking the same amount of tea
for 20 years and if he thought it was now causing me to be dehydrated for a year without dying,
then that probably isn't what's causing my dizziness. Needless to say it wasn't and if I had known
that was the only reason for that stupid test, I would have saved myself a load of cash.
I've become very frustrated with doctors over the past 3 years because I've found that most of them are like auto repair shop that rips you off, same approach you know. All about the money, but not for the outcome.
I'll post back as much as possible to see if anyone has any insights.