Undiagnosed Symptoms Community
A PAINFUL JOURNEY
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This patient support community is for discussions relating to undiagnosed symptoms, breathing difficulties, feeling cold, cough, diarrhea, dizziness, fainting, fever, indigestion, itching, nausea, numbness, pain (chronic), paralysis, rash, sweating, swelling, urination problems, and vomiting.

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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 (migraines), 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.
Tags: Pain, chronic
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8 Comments
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Avatar_f_tn
Check for Celiac disease as well and test out eliminating milk (whey) products, especially cheese and ice creams for at least a month or more (may help with IBS). MS should show up on MRI's and a neurological exam. Sounds like all other bases were covered and are being covered with the upcoming Thyroid scan. I am currently experiencing many of your same symptoms and tests. Docs say Fibro but like you feel it must be something else. You can have more than one diagnosis, as I have three, that combined together create unbearable pain. I am going to go back to endo for a more complete thyroid test as my T3 was low as were five other areas and doc said all was normal. Was your allergist doctor also an immunologist? I am considering seeing an immunologist.
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Avatar_f_tn
Also, the HSV may cause some of your minor symptoms some of the time but not all that you describe. Most likely you are unfotunate to have multiple diagnosis with Fibro being only one part of the puzzle. Many of thye symptoms sounds like they are related to the ruptured disks. I do urge you to try the milk free diet for at least a month and check for Celiac disease for your abdiminal troubles.
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214544_tn?1201150990
I've posted my story on a few forums and I would like to copy and past an answer to your questions:

Hi.  My name is Deb.  Thanks for taking the time to respond to my post.  I've had a brain MRI & MRA, both were good.  The MRI of my spine produced the findings indicated in my post.  I have tried gluten free, lactose free, IBS diet and even monitored all my foods and I've eliminated- pork, spicy foods, popcorn, carbonated beverages and some other foods that are not getting broken down when digested.  This has relieved me of heartburn, indigestion, acid reflux, hemorrhoids, stomach pain, vomiting, constipation and pain when passing bowel movements, but has done nothing for the diarrhea, mucus and extreme pain while the stomach contents move throughout my body until coming to a rest.  The noise of this process is even extremely loud and can be heard from many feet away, reminds me of the movie- ALONG CAME POLLY.
I appreciate any help you can provide me.  Feel free to ask me any other questions you may think of.  I wanted to include my entire surgical history on my post also, but my post was too long as it was.  I don't know if the allergist was an immunologist or not.  I just know there are a few things that I'm allergic to such as many pain meds, which i'm severely allergic to and can't take.  I've never heard of an immunologist, so I'm guessing this doc wasn't one, but who knows.  Do they actually check your immune system or what do they do?     I hope to hear from you again.  Thank you so much- Deb
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Avatar_f_tn
I am unsure of what they do but what I read was that they do check out your immune system. Maybe you need to be tested for more food allergies and other allergies not ptreviously tested for.
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149081_tn?1242401432
fibro is highly connected with sleep disorders - might be something else to check out.  google it!

  good luck
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214544_tn?1201150990
Thank you scarlet.  The doc does have me scheduled for a sleep study, but I can't get in until Jan. 08.............so I guess it will be a while before I know anything about that, but it seems to be something else to check.  So you are on the same thought line as the doc!  :^)
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149081_tn?1242401432
    I just had a sleep study done a few weeks ago and can't beleive all the info I have found related to my short term memory loss and excessive daytime fatigue!!   I always thought it was just my thyroid- but since having it removed and now being properly medicated my endo said it's time to look into something else.
   I have since added an anti deppressant into the mix- it helps me not to focus on feeling so crappy. So now I'm just a dope with a smile :)
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214544_tn?1201150990
I got my ultrasound today and posted in my journal that the disc they gave me of it shows that I have a lump on my thyroid that measures .67 x .47  so when my doc gets the results I'll find out what he wants to do.  Does that size sound too bad?
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