A PAINFUL JOURNEY

[dlhigh]

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.

[dlhigh]

I've been responding to posts on here since June and I also noticed that many don't reply.  At first I thought they didn't check back or that they didn't like my post, but then I thought that when they don't write back again it's a good thing.  It probably means they have been helped.  Before this month, I only wrote to those in forums with questions that I could answer, like family practice, OB/GYN and GI.  I avoid the chronic illnesses and now I've begun to read through them and try to share my story also, but I still avoid the cancer forums.  I have a difficult time dealing with the effect that death has on people and I have no experience in cancer treatment and very little exposure.  Which to me is a blessing and I prefer it stay that way.  I'm glad that you are not in pain.  Many of the symptoms that you experience with CFS/FM and mine from whatever they are from are still very difficult and can make it hard physically and emotionally when looking at the long term.  I think that's why I'm happy on here.  It gives me a place to meet friends, learn new methods to cope and help others who are sick or having problems.  Your name doesn't light up like a member, but I wanted to see if you knew about the mymedhelp at the top.  You can fill out the info and start sending messages to other members on here, add friends and keep a journal.  I hope you enjoy and take advantage of the comfort this site can offer, I know I am already.  Like I said I've been writing posts since June or so on here, but didn't even know about the links at the top and that I could do all the other stuff.  It's becoming a home away from home for me.  I spent the summer watching my family go out on our boat skiing, tubing and then quad riding, while I sat at home in pain unable to do those things anymore.  It broke my heart to realize that I'm now confined to home, but when my kids accepts that there are things here they can do with me to have fun time together, it will be much better.  They can go play outdoors with their dad and then indoors with me.  I'm just waiting on my husband to come around.  He's still dealing with a lot of emotions about all this.  He's a very active person.  I was too until this began a few years ago.  I miss playing hacky-sack with my husband, brothers and my neice.  Unless things change, this is something that I won't be enjoying again.  Anyhow, I hope you check out the links above and see what all you can really do on this site.           Deb

[Curls]

Thanks for the explanation.  I'm glad you are feeling better if even a little at a time.  I do share bits of my story when it's bothering me, but have been dealing with it for around 10 years with a pretty good understanding of what I have, so I've had plenty of time to vent!  (And have.)  My suggestion on making it shorter is that you might draw inputs from people who have data but otherwise can't read through so much.  Many people post questions here and then don't respond, even with a thanks, after getting some replies, so at least for myself I find myself hesitating to invest too much on an intial post.  Hope that idea makes sense.  I actually don't deal with pain that much.  I can keep that in control with all sorts of other limitations.  I have "CFS with FM elements."  Says so in one of my first doctor's chart (makes it truth right?) but I tend to agree with him.  (The CFS is heavy on the muscle and cognitive issues, and the FM is the heavier on pain.)  I'm glad others had something to offer because I didn't feel I really did, beyond my hum, that's not all FM, observation.  Even with different illnesses, sharing ideas really can lead to improvements.  I look forward to more sharing.

[dlhigh]

As I said before, all your input has been greatly appreciated and nothing I stated was meant to be out of order or to cause offence.  I have an illness that presents itself problematic at times in wording, word recall or proper order. It's especially hard when speaking via notes, where the only thing noting differences in tones are capital letters and exclamation points.  
It's not a guess in saying that you too are probably in pain like myself since you are visiting this site.  This tends to make what people say always seem the worst instead of the best.   There are also some who visit these sites only to dispute with people who are suffering.  My only intention for posting here is to collect new perspectives, suggestions and advice, not quarrel.  I've posted this to a few forums in such a lengthy post in order to find people who are patient, kind and caring enough to even read such a long letter, to gather information from because I've already googled as much as I possibly can stand, aside from many of the words I've used in this post to get spelling for, due to my growing memory loss.  Talking with other people who are also suffering is the only way I may find new information, that doctors may not have a clue about.  The response has been wonderful and I've made many new friends.  I'm sorry that you are so upset and your time is valuable. Since I shared my story yesterday with so many people on here I noticed that instantly I began feeling better, just having good people to talk to about it. You should consider sharing your story if you haven't already and you will begin feeling better too.  I looked on your profile, but couldn't find it. Please direct me to where it is, so I can read about what you've been through.  Thank you again for all the time and patience you've given me.  I look forward to talking to you again soon!

[Curls]

"I assumed you actually wanted to know the results in order to discuss them further with me."  I was trying to help you feel better or figure out why your doctor would not disclose them.  I could discuss the details of them further unless I understood them...  This isn't a doctor's forum - it's just other patients and since I have CFS and what you have is different, my knowledge is obviously going to be very limited on testing for what you have.  I would have thought that would have been obvious.  Also, that I am just doing this on my own time, not for your specific benefit, to the best of my ablity.  Some people go to many more than 25 to get answers.  I was trying to tell you that you aren't alone in being frustrated.  So sorry to waste your time with my lack of knowing what you have when 25 doctors haven't been able to answer your questions.  I really think if you broken things down and posted them each on the relevant forums you might get some knowledgeable answers - like just one grouping of test results at a time or one set of symptoms with a brief generalized statement about the rest.  I am glad I was able to help you with the one thing this forum could do, verify that your symptom pattern doesn't really match FM.  However, maybe some of the mechanisms are the same and if you learned about them for FM for the overlapping symptoms you find some clues to help and your docs sort it all out.  Good luck.

[dlhigh]

You asked what kind of information was not disclosed to me, so  I listed everything.  These results are from my old doctors.  My new doctors are very kind and patient.  I have looked up all that information regarding those results and understand the possible conditions and/or concerns with them which is why I'm upset that they were not disclosed to me upon their discovery.  I assumed you actually wanted to know the results in order to discuss them further with me.  Well, it's a good question and the info is out there now for anyone who would like to discuss them with me.  I was just diagnosed with Fibromyalgia the 1st of Oct., but my doctor is also aware many symptoms don't fit.  I've been to over 25 doctors already.  The only other doctor I feel I'd like to add perspective from at this point would be a rheumatologist.  I will contact my family doc about that.  Thank you for all your suggestions.

[Curls]

I have no idea what any of those readings mean.  They may all not be significant...?  It sounds like your doctor isn't communicating well.  I dont' think that's purposeful though.  Doctor's often (especially specialists) aren't that good at communicating beyond straightforward information.

I would take them to my doc for a separate visit than the usual and ask about them, what do they mean, do they have any implication for your symptoms.  If he doesn't give understandable, useful answers I'd look for another doc (yet again) to talk to and ask those questions.

You may be able to go enough googling to get an idea on each one and see what you think from there?

Given that you've been diagnosed wtih FM when you have definitive symptoms that don't fit, maybe other doctors, is the answer.  Many people find themselves going to many doctors before they get the answers to the health situation.  If it's not a straightforward textbook case of something within that doctor's expertise knowledgebase, it can be very hard.  If it's not a common diagnosis even if straightforward it can take a while to find someone with knowledge to diagnosis it.  Good luck!  

[dlhigh]

Thank you for taking the time to read all this.  I've definately been diagnosed with Fibro, but to me it's a joke, like you stated I have other symptoms that don't fit.  I do have all of my medical records and continue to follow that rule with further tests or visits.  
This is the list of items that have never been disclosed or discussed with me by any of my doctors and yet are on my medical records that I recently found upon reviewing them.

GI tests found:
chronic inflammation with focal goblet cell metaplasia, a single goblet cell metaplasia is , by itself, insufficient to establish a diagnosis of Barrett's esophagus, recommend clinical correlation.  

benign gastric fundic-type mucosa with mild chronic inflammation- i experience constant mucus on my bm's???

Redundant colon- which can be normal, but I can go days w/o having bm and then go 5-10 times in one day. Wouldn't a redundant colon be of concern for someone w/ IBS and delayed bm's such as this?

appendix with areas of Lumenal Fibrosis.

Urine tests:
WBC 3-5 and rare/hpf
RBC 0-2/ hpf
epithelial- rare and high few/lpf
c-reactive protein high
blood in urine always high trace
mucus 1+/lpf
always cloudy
high levels of protein for a urine sample done by the nurse at my work, but my doctor at the time stated it was of no concern.

Blood tests:
AST- LOW 14
ALT- LOW 12
T BILI- 0.1 LOW
ANION GAP- LOW 7.0
OSMOLALITY (CALCULATED) -  LOW 272
ABSOLUTE BASOPHIL COUNT - LOW
BUN- LOW 5mg/dl
BUN/CREATININE RATIO- LOW 5.3
MEAN PLATELET VOLUME NE%-HIGH
ABSOLUTE NEUTROPHIL COUNT- HIGH
LYMPH % -  LOW
ABSOLUTE MONOCYTE COUNT- HIGH
EO % -  LOW

ALMOST ALL OF THOSE ARE CONSTANTLY WITH THOSE READINGS

I'm the first one to acknowledge that doc's are busy, but the doctors who have seen me are not just busy, they have completely forgotten their oath it seems.

Thanks for all your help!

[Curls]

The long list of onset of symptoms does largely sound like FM symptoms.  However, with the other pieces, "3 herniated cervical, 3 thoracic and 2 lumbar discs" and actual paralysis, swelling, shocking sensations when tilting my chin down toward my chest and few of the other symptoms don't sound like FM.  It'd be good to keep that in mind when trying to figure out what to consider over time.  FM is a diagnosis of exclusion, which means that if nothing else shows up on rule-out tests AND you have the definite symptoms of the syndrome (there's a case definition for it) - then you may be diagnosed with it.  In general autoimmune illnesses are that well understood by modern medicine and testing it's perfected, so it can be hard to sort through, even with a good doctor.  (Some of what you are describing doesn't even sound like autoimmune conditions.)  There is a condition that can cause CFS/FM type symptoms that's a misalignment at the base of the neck called chairi formation.  

The undiagosed forum is so broad, that people often don't answer.  It would be helpful, if you broke your questions into much shorter ones, so that it wasn't so overwhelming to read - you might get many more answers that way.  It's obvious you've been through a lot.  I hope you start to get some clues.

What kind of info was not disclosed to you?  Doctor's are busy and human, and can tend to mention only what seems central at the moment.  I always get copies of my records for myself after the doctor goes over them with me,  since I have a lot more time and interest in looking at the details about myself.  What kind of stuff was withheld would make a difference in understanding your question...