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A PAINFUL JOURNEY
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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.
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17 Comments Post a Comment
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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
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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
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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
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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.      
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Avatar_f_tn
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
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Avatar_n_tn
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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214544_tn?1201150990
c-section, scar-tissue removal, tubes tied, gallbladder removed, hysterectomy, scar-tissue removal, kidney surgery to remove stones and appendectomy with scar-tissue removal.
Family history of Fibromyalgia, digenerative disc disease, heart disease, lung cancer and female problems such as hysterectomy, endometriosis, cycts, tumors and cancer.

medications:
I'm being weaned off of Gabapentin 300mg 4 pills 3x daily, currently down to 8 pills per day.
Lyrica 75mg 2x daily
Tramadol 50mg 5x daily
Acyclovir 400mg 1x daily
Zanaflex 2mg 3x daily
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Avatar_n_tn
Sorry that I missed your meds in the first post.  I looked up the Acyclovir  and a lot of nasty GI symptoms can occur with it.  I too am on lyrica and tramadol.  I also take baclophen which is similar to zanaflex.  The porblem with IBS is that you can't take most meds for it if you'd had adhesions.  (I've also been there with hysterectomy, adhesions, et al.  I have ovarian remneant syndrome as well which causes ovarian cysts despite no ovaries).
I have been through the herniated discs and arthritic changes to my spine (including an anterior cervical fusion) last week I finally receivec a diagnosis of Cervical spondylotic myelopathy which explains almost all of my MS type symptoms.
I feel your pain and pray you find an answer soon
moeck
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214544_tn?1201150990
What type of doctor diagnosed you with Cervical spondylotic myelopathy?
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Avatar_n_tn
A neurologist at Johns Hopkins.  I had sent them copies of all my reports (mris, emgs, surgical findings etc).  They then make an appointment for you with the doctor at the speciality clinic they feel is best for you to start with.
moeck
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214544_tn?1201150990
I keep feeling that many of my symptoms are due to my discs, but both my neurosurgeon and my neurologist who are going off of my MRI's done back in Nov. of last year, prior to my severe episodes, pain and new symptoms feel that my spine is not the issue.  I feel that new MRI's need to be done to determine that, but they are not willing at this time.  Please let me know the treatment they are going to do for you and if it helps.
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Avatar_n_tn
actually you are already on it, the lyrica-nerve pain, tramadol-non narcotic general pain releiver and zanaflex which is for muscle spasms caused by nerve signals.  It is a muscle relxant but works to relax the nerves which cause the muscles to spas, not on the muscles themselves the way valium does.  Also physical therapy to try and retrain my limbs to work normally.  But nothing with high impact.  I can't get into a pool for a few weeks (wrist needs to heal and I have a nerve block next week) but my neighbor who has lupus, is moving back from the beach next week and together we are going to find a heated pool to go to everyother day for exercising in and will walk on the other days.  I'm still not supposed to walk alone in case i fall again.
sorry I can't offer a more concrete answer.  With CSM they break it down to three possibilites.  a 20% chance of healing within the first year, a 40% chance of staying the same and a 40% chance of it either worsening or going into a relapsing/remitting pattern of symptoms.
Although I blame my IBS on adhesions and my abdominal pains on cysts, many people on the spinal health boards who have CSM complain of abdomianl pains as a symptom.  Also the pains and numbness in the area that would touch the saddle when riding a horse.
hope this helps some in your search
moeck
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214544_tn?1201150990
I've always had slight bowel problems since I was 14 when I fell across railroad tracks and landed my lumbar on them.   Wow ......did that hurt, so I'm convinced that bowel and bladder issues are always connected to spine problems.  My neurosurgeon even said............"I won't consider surgery unless you become paralyzed or lose control of your bowel or bladder".......so yes it's true, they are definately connected.  It seems like doctors are giving the same meds anymore for many different problems...........I know people think it's crazy, but it's true.........pharmasudical companies send those reps out in droves to bug doctors to take samples of their meds and even offer the doctors incentives to promote and prescribe them...........this should be illegal.
That's why I believe they all are offering the same new drugs for some many different problems.............AND LET ME TELL YOU WHAT...........the stuff I'm on doesn't help AT ALL!    I'm tired of being in pain and then having a doctor give me happy pills that don't make me happy, just horny and sad........muscle relaxers that don't relax me, but keep me awake all night.......and  pain pills that should be taken for a headache.........not this kind of pain!     I've actually been very tolerable about this entire situation with the doctors and the meds and even when they told me that I have carpel tunnel and prescribed me bi-lateral wrist braces to wear at night, but oooooooh what good that does me when my arms ache the minute I put them on...............such is my life and I just have to laugh.........because if I don't laugh.........I'll just cry and that makes my eyes more poofy ........and I don't need that ............hehehehe.   Thanks for letting me know about the meds moeck.   Talk to you later on.............Deb
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Avatar_n_tn
Wanna switch docs...besides the meds I've told you they also give me valium and flexierl for muscle spasms, percocet and vicodine for pain..all just in case I need it.  Not once have they offered me happy pills, antianxiety pills or sleeping pills.  dang.
moeck
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214544_tn?1201150990
I'll give you my happy pills, but you can keep your meds.  I'm severely allergic to anything made from codeine or hydracodone and flexeril I've tried and it makes me sleep all the time and then I'll talk with a severe slurr.......lol
Your Vic's and Perc's are both made hydracodone unfortunately.
If you don't like the flexeril, then you should talk to your doc about the Zanaflex, since they seem to do just the opposite and Valium......wow.  I've never taken that but, I've heard it's very addictive, is that true?  My docs don't really want me on anything addictive, since this is a chronic illness, but what can you do ..........when it's also CHRONIC PAIN. .........oh my.    So I will just keep waiting and know that my pain as bad as it gets..........just reminds me that I'm still here with all the good people of this world and where else would I rather be.
Don't forget to send me a message on the mymedhelp again and I will add you as a friend............ok.    Deb
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Avatar_n_tn
Flexeril makes me sleepy and slurrey as well
I'm already on baclophen which works the same as zanaflez, my neuro debated between the two before choosing the baclophen, said it was easier to get the dosage adjusted correctly
perc makes me nauseous..which made me forget the the phenegran which I take when nauseous, really puts me to sleep
The vic works best, but I can't drive when taking it
the valium can be addictive but I only take it about once every three or four days, not regular enough to cause problems
sheeesh, never realized how much I have in the way of perscriptions until now.
i also have the urinary hesitancy, stress incontinence and inability to completly empty my bladder.  i have to sometimes remember to  pee and "force" myself to go.
I hope you find some answers soon, there is nothing more wearing on the body, mind and spirit than chronic stress (physical or emotional).
I haven't been able to work since May 1 of this year.  my short term disability ends next week and the jury is still out as to whether or not my long term will be approved.  I had just started the highest paying job of my career and actually graduated with my BS in health care administration three weeks after my cervical spine surgery.  Three years of going back to school fulltime while working, thousands of dollars in tuition (borrowed against the house) and now I may never use it.
Oh well, enough whining.
moeck
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214544_tn?1201150990
I know exactly what you mean.  I've been unable to work since Dec. 06 and a year prior to that I received a promotion that came with a huge pay increase and then four months later it was time for annual raises which the supervisor we had for the better part of the year evaluates and determines and I received a 9% pay raise on top of the new salary I was already making from the promotion.  It was my best year ever and then this.........I worked for a good six months in severe pain prior to going on medical leave and now termination status.   It just amazes me how...........you work your butt off for a company and then this...........well I only hope that justice is served for me on the legal home front when all is said and done, so that I will be able to pay my medical bills and be provided for.    I have that same problem about going to the bathroom.  I forget until I have this severe pain in my lower back that goes all the way through to the front and then I remember............ut oh I forgot to go pee.   Which can be a very bad situation if you forget and then cough hard or sneeze........oh boy!   Life is funny like that.  Did you get my message?
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