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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.
18 Responses
231441 tn?1333896366
Hi,
wow! You are having a tough time.  Welcome here.  People are very friendly and supportive.

What's your name?  Then we can make things a little more friendly.

I can't provide you any clear answers at this time, but it seems you have been tested for just about everything.  Do you know what the results of your MRI were?

One comment:  have you been tested for celiac?  This is a common cause of "IBS".  Celiac means that you are intolerant of gluten.  Gluten is found in wheat, barley, rye and most oats, and anything made from them.  The best way to confirm (though testing is available, it is not surefire) is to try an elimination diet.  Cut out gluten and gluten containing products.  I had severe 'IBS' with explosive D, bloating, pain, reflux, weight gain and it has nearly completely resolved since I went gluten free.  

Ok, this was an answer for me, and it may not be the answer for you, but given your situation it won't hurt to try.

Others will also try to answer you.... hang in there.

Sally
214544 tn?1201150990
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 hope to hear from you again.  Thank you so much- Deb
231441 tn?1333896366
Deb,

Your situation is very complex, and no doubt compounded even further by having had multiple surgeries.

Are you still following the diet?  It should help from what you've said, so don't give up on that.  Sounds like at least a good portion of your problems could come from that area....  also sounds like you are not eating nearly enough (if only 1 small meal a day).... your body could be having chronic malnutrition.  

Although you are suffering a lot, it also seems that the doctors haven't been able to find something really concrete they can pin down and treat.  Sometimes when things have been bad for so long, it can really wear you down as your whole life is revolving around what you are feeling and experiencing.

Tell us some more about yourself other than your health issues.  What do you like to do, etc.  Are you mobile?  One of the biggest challenges is to find a way to have a good life despite the health issues.... if there are no clear or easy answers.

S
214544 tn?1201150990
I'm going to copy and paste what I just posted on another forum which probably tells more than you even want to know about me and my situation.
anyhow, here goes:

My husband is distant and angry with me for my illness and job loss due to it and my children are 15 & 19 and they still can't grasp the extent of my limitations, even though they drive me if I have to go anywhere because I'm to the point that I don't drive anymore.  To make matters worse, the majority of my problems began from hurting my back at work, but not being able to prove it until two years later and during that time getting promoted to an extremely stressful sedementary job which worsened my back problem and created a definite environment for Fibro to develop especially due to my family history of it, which I didn't even know about until after being diagnosed and then to top everything else, my work fired me after denying me ADA accommodations that may have prevented all this.  I asked for my broken desk to be fixed so that it would go up and down with ease like all the other empty desks around mine, but they refused to fix it and one day when I tried to push on it to make it go down, I began having severe pain, took three steps away from my desk and collapsed tremorring all over.  My Anesthesiologist said that the disc bulged and temporarily touched the cord causing my collapse.  All I know now is, I'm left filing for SS, awaiting an EEOC and BWC hearing for this and it's been since Dec. 06 when I could no longer work and my husband has taken over all the bills including my truck payment and our parents have helping us with groceries and school expenses because my husband refuses to get money out of his 401k to carry us over until this is all settled.     phew.......ok I feel better now.  Sorry about giving you TMI.  All this stress combined with my attorneys, doctors, SS office and my x-employer's attorney's has left me in constant pain, unable to walk, think clearly or even care what happens somedays.  I found myself telling the SS office rep. that it's clear by the figures that I'm worth more dead than alive (as most people are) and the rep replied yep and you have a nice day.   I just thought I would share a little humor from my life after all that stress I unloaded.    Anyhow, thanks again for listening.  I hope I can return the favour.      
Avatar universal
Please I do hope you will take this as a helpful suggestion - to help you minimise the pain you feel from all this horrendous experience - Have you considered going to a stress management/pain management program like the one at the Mind-Body Medical Institute at Mass General Hosp in Boston, or the on Jon Kabat-Zinn runs at UMass Medical Center, or like the one Jonathan Smith runs at Roosevelt in Ohio?  It does seem that you have pain from not only the physical side, but also the emotional side is adding to it - so as some people have said, you have the 'arrow' not just once, but also twice - first from the physical pain, and then from all the emotional pain, and the anger you are feeling for all these tests, etc over your life.  
Also, if you want to know more about HSV-2, check out this website which is free and key in HSV-2 and  you will learn alot...  http://www.ncbi.nlm.nih.gov/sites/entrez
Hope this helps, remember, doctors are not perfect - my parents were doctors, they definitely made mistakes and definitely were not perfect! I am a stress management autogenic therapist in the UK, and I definitely am not free from stress!  
All best wishes,
Ruth
Avatar universal
I'm sorry for all the pain, both physical and emotional, you are going through right now.  Two quick questions re: your history. Have you ahd any abdominal surgies, and what medications, if any, are you on right now?
moeck
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