Undiagnosed and going crazy!

[TruBlu]

I have been dealing with undiagnosed symptoms since mid-October. I've had lost of tests but no answers. It is so hard to focus on normal daily living with such a worry in the back of my mind. I just keep telling myself that I am not "sick" until they tell me I am, but it is really hard sometimes.

[Mackey Mouse]

Hugs to you... I may have to go and reread what your symptoms are...lately my brain is not doing too well and I am thinking here, I know I read it...didn't I? I did a bit of a search and saw that you were asking for information on surgeons and that you were having your first physical a while back, but am not sure what is going on with you... If you want to share with us, maybe we can help.

Keep plugging if you are not feeling well... every test in the book needs to be done until they find out what is ailing you...

[jann1033]

don't know what your symptoms are but i have an illness that is hard to diagnose, partially due to some weird thinking in the health care community( that is at least improving a little after 20 yrs but not much yet) partially due to there isn't a test for it so they have to basically rule everything else out first.

so i know it is terrible to know something is wrong and not have a name for it...there is really nothing you can do but till you find out listen to your body and don't do anything that makes it feel worse. try not to let it bother you if others expect more than you can do or say cruel things no matter who they are, Dr or layperson( like the jerk neurologist i went to who told me nothing was wrong with me...hmm i used to be able to walk 10 paces now i can't, didn't realize by walking before i was preforming a miracle). for me at least that is way easier said than done... and maybe look some stuff up on the Internet or if you have an understanding Dr ask him and see how you can cope with the individual symptoms till you can get something to treat the illness if you can.

this might sound harsh but for me i had small kids when i got sick and since the Drs. had no idea what was wrong with me( I have CFS but at the time was bedridden and getting worse so they thought probably terminal cancer they couldn't find or some thing similar...this was almost 20 yrs ago so not as advanced dx testing as now available) i knew i could not deal with some things( like being around to see my kids grow up) so i had to stop myself from even thinking along lines like that...sometimes you have to just force yourself to have as positive an attitude as you can.

try to remember eventually you'll get past this and hopefully they'll figure it out and be able to treat you successfully

[minkydog]

It took months to diagnose DH--they thought he had everything from hypochondria to lung cancer :confused3 Even after his diagnosis(sarcoidosis) some of his docs refused to believe he felt as bad as he did and they treated him as if he was malingering. Not until he was admitted to CCU in septic shock & heart failure did they realize that he was really, really sick.

I know it's frustrating to not know what's wrong. Just because there is no diagnosis doesn't mean there is nothing wrong. It only means the right stone hasn't been turned yet. :grouphug: I wish you peace and lots of energy over the holidays

[TruBlu]

I think I am just a mess! To me it seems like there may be more than one thing going on and that seems to confuse the doctors.

I have had swollen lymph nodes under and down my left arm since October. Because I was having some strange breast symptoms too, I started there. Last week the Doc at the BC Clinic gave me the wonderful news that she was sure it wasn't IBC!!! So, we are watching the symptoms for 3 months. She said that the arm was not related to the breast symptoms, so I moved on to my primary card doc. Before I got in to see him I developed a sinus infection causing lymph nodes in my neck and face to swell. That was about 3 weeks ago, but they haven't gone down.

Then, I started having pain in my upper right side (just under my ribs). The doc could feel swelling there, so he ordered blood work and a CT scan. (And while I was there I also got an MRI of my shoulder and neck.)

So... CBC was normal (borderline anemic), CT scan showed nothing except the hernia that I knew I had, and the MRI showed nothing that would be causing my problems (just a bulging disk in my neck and a cyst in my shoulder).

Since then the pain in my right side has gotten worse and spread to my back. My lymph nodes are still swollen, and I've just started to feel bad. I'm really tired, have chills almost every night, not much of an appetite (along with a few other symptoms)....

SO yesterday they repeated the CBC and I go back in 4 weeks for follow-up. He didn't seem worried about the abdominal and back pain since the CT scan was good - but I can't help but be concerned!....

Anyway, I'm sorry to unload all of that.... But it makes me feel better to tell someone!!! THANKS!!! :goodvibes

[safetymom]

:grouphug: I am sure it is frustrating. I will keep you in my prayers.

[jann1033]

this will sound crazy and i am sorry it is so difficult for you right now but if it is more than one thing it is good they are still searching and not just latching onto one symptom...
that is one reason it took me a over yr to get a dx....they kept thinking every new symptom was related to my av malformation( which is in my leg) it wasn't till my other leg started dragging( and it happened in the dr office rather than just at home) that they ruled that out totally as the cause for the new stuff...( even though the cardiologist said they were crazy to even be considering the av problem as the culprit:rotfl: ) so no dx is better than a wrong dx even though it will be hard to deal with till they find out what is up.
it never fails everytime i go to a new dr( hard to find one who really knows or understand cfs and my initial dr moved) they latch on to " The LEG" ( scary music chord plays in the background) as the problem like a dog to a bone:lmao: :lmao: so now they will have both The LEG and the diabetes..so i'll never get any help for the cfs( the worst of all of them for sure and what had disabled me)...good thing my new dr is young and not ready to retire or something :teeth:

[Mackey Mouse]

There must be a reason why you have swollen lymph glands....isn't that usually a sign of infection?

I read that you had a sinus infection and sometimes I believe it takes a while for enlarged lymph nodes to go down.. hugs.

The chills etc....they have checked your thyroid? What about looking for lyme's disease.. there has to be a reason for these symptoms..

I hate it when they cannot find out why..

[jann1033]

how tired? can you function or are your normal activites limited, like maybe by 50% or more? not saying this is you but a couple things fit( fatigue, chills, swollen lymph nodes )
so you may want to check this link out ....

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

http://0-www.cdc.gov.mill1.sjlibrary.org/cfs/cfssymptomsHCP.htm#primary

[TruBlu]

how tired? can you function or are your normal activites limited, like maybe by 50% or more? not saying this is you but a couple things fit( fatigue, chills, swollen lymph nodes )
so you may want to check this link out ....

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

http://0-www.cdc.gov.mill1.sjlibrary.org/cfs/cfssymptomsHCP.htm#primaryNot really that tired... I just feel like sleeping more than usual.

[TruBlu]

I got a call the day after Christmas from my doc. I am now officially anemic. They are going to do another blood draw in the morning to find out what type of anemia. I am really scared. I've been all weepy these days....:sad1:

And I now have some huge swollen lymph nodes in my ankles!

[Mackey Mouse]

HUgs to you but at least you are stepping in the right direction get some answers..

Try to keep positive, so easy to say, but try and once they find out what is causing this, there will be a treatment plan in place and you will be on the road to recovery... I am sure of it..

Hugs again..

[Christine]

I got a call the day after Christmas from my doc. I am now officially anemic. They are going to do another blood draw in the morning to find out what type of anemia. I am really scared. I've been all weepy these days....:sad1:

And I now have some huge swollen lymph nodes in my ankles!


TruBlu,

I've recently become anemic too. I don't have the odd symptoms that you are having but I've got *something*. I go back into the doctor on Tuesday to check on the anemia again. We think it is iron deficiency but I still haven't been thoroughly checked out.

[Shugardrawers]

To know that something is wrong and not have anyone listen or know the answers is the most frustrating thing in the world. I know. I'm keeping you in my thoughts.:grouphug:

[TruBlu]

Thanks for all the support guys! I spent last night in the emergency room. I started having severe abdominal pain and bleeding. I'm still hurting, but not bleeding anymore. The anemia isn't any worse, so they didn't admit me. Still going crazy... I guess I'm getting used to it!:crazy:

[TruBlu]

OK, now the upper abdominal pain has gotten so bad that I'm not even worried about the lymph nodes anymore! The pain is on the left and right side right under my ribs and hurting into my back. I'm a mess...:sad1:

[Pea-n-Me]

Am sorry to see you're still not feeling well. I wrote out a long post but decided to PM you instead of post it here. Hope you get some answers soon. :grouphug:

[Christine]

Hope you are doing okay now. Please let us know!

[Mackey Mouse]

Hugs to you...I was reading your symptoms and they were making me a bit nervous.. Have you had CT Scans...if you have said yes before, please forgive me as my mind is mush and I probably do not remember..

You have to get in there and fight for your rights and get some answers.....no one should be suffering with no answers, not with what we pay for medical insurance. These are not the dark ages....they need to find out what is causing you pain..

Please keep us in the loop and try to stay focused on getting some answers, it is so hard to do that when you do not feel well.. Hugs again.

Edited here: I saw that you had a CT scan and that showed nothing.. are there tests stronger than a ct scan... what about a pet scan? Just wondering.. Hope you are feeling somewhat better today.

[jann1033]

so you went to the er and they sent you home bleeding cause the anemia wasn't worse? did they give you any explaination for the pain and bleeding?where are you bleeding, internal, external? this makes no sense...have you been to more than one dr? if not i think i'd go to a new internist and see if they can't see things from another perspective.

[KPeveler]

i've been sick for over 7 years. the cfs is terrible, but half of the medical community doesnt even believe that it exists. because i am a young-looking 20-something female, they assume that I am making it up, its all in my head, its stress... any number of things.

it sure would be nice if someone would do a few tests! i live like a hermit cause i work 40 hrs a week and after that i essentially have to be in bed the rest of the time! so i know how you feel when drs dont listen. they assume because you are not dying you are living a normal life.

[Mackey Mouse]

Hugs to you too KP... geez.. I hate reading this that so many of you are living in pain with no help. It breaks my heart...

[disney kid at heart]

So sorry for all the problems you are having. Have you seen a gastroenterologist? My DH was just diagnosed with B12 defiency and he had been having trouble walking since last January. He was treated for varicose veins but the real culprit was B12. Dr looked at his nails and knew right away. Hope you get to the bottom of it and get better soon.:hug:

[jann1033]

i've been sick for over 7 years. the cfs is terrible, but half of the medical community doesnt even believe that it exists. because i am a young-looking 20-something female, they assume that I am making it up, its all in my head, its stress... any number of things.

it sure would be nice if someone would do a few tests! i live like a hermit cause i work 40 hrs a week and after that i essentially have to be in bed the rest of the time! so i know how you feel when drs dont listen. they assume because you are not dying you are living a normal life.

i've had cfs since 1988..there is a thread here on fibro and i posted there...maybe we should start our own? i've had all the tests and they don't help anyway although they should have done that since it's dxed really by excluding everything else. it is unbelievable the way the majority of drs act about it...i'm hoping since the cdc has at least been forced to wake up( after ignoring over 2000 published articles proving it's organic in origin and not all in any one's head) maybe it will start to trickle down to the rest of the medical establishment ...even though i still see lots of "lazy crazy" slanted articles :sad2:.......
but i digress as i was
just originally stopping by hoping trublu had heard something good

[TruBlu]

Thanks for all the concern!:grouphug:
I'm still in limbo here. I just finished another antibiotic, but it didn't really help with the lymph node swelling. My GI symptoms have improved a little, but I am still in a lot of pain. I have an appointment with a GI doc on Jan. 31. She is the one that did my colonoscopy and endoscopy back in July, so hopefully she will have some insight into my pain.

I've got to get better! We are going to visit Mickey in June and I've got to be ready to chase around my wild boys (DH included)!!!:goodvibes

[TruBlu]

I shouldn't have said my GI symptoms were better! Last night was terrible. The pain shooting from my sides and stomach into my back was really bad. So, I'm off to see my primary care doc this afternoon. Hopefully they can help me.:worried:

[Mackey Mouse]

How did you do at the Doctor's.. I do not like this pain shooting into your back area...seems to me they can find out what this is.

Have they done an MRI? If a CT scan is not showing anything, you have had an endo and a colonoscopy, right?, and they are not showing anything.. what test is left... MRI??? Or is it a Pet Scan.. You have to get in there and push for further testing. No one should be in that kind of pain, sorry. no one.

[TruBlu]

Well my doc is puzzled:confused3 . He wanted me to go to the emergency room, but I've already tried that!:sad2: So, I refused.

Now we are going to repeat the CT scan (the other one I had was back in November, and my symptoms are much worse now...). He is also going to try to get me in sooner with the GI doc.

For now, I'm just going to cry myself to sleep.:sad1: Not really, but I am close!:sad2:

[TruBlu]

On a positive note... I didn't eat since lunch and my pain is better - not gone, but at least better.:)

[Pea-n-Me]

For now, I'm just going to cry myself to sleep. Not really, but I am close!
Aww :sad1: :hug:

[Mackey Mouse]

Did they rule out gallbladder?????I might have to go back and do reading from the beginning...but if you do not eat and you feel better, I am wondering out loud here.. Also, it might have something to do with digestion and processing of food, which really should be looked into.

OK, going back to read and will come back here and finish posting. When I was having gallbladder symptoms.. the pain was strange, it would start in my chest and move around to my back and throb..

They did an ultrasound and saw that I had gallstones and a lodged gallstone in the bile duct can be very painful....have they done an ultrasound of that area?

Now I have since found out that I had my gallbladder out for what in fact was reflux as I still have that same pain. But I have to believe they did indeed see gallstones and just did not go in there willynilly and take out my gallbladder for nothing.. this is at least 10 years. I still have reflux and still have that pain, middle of the chest..

I am glad that they are repeating the CT scan, but is there a scan that is stronger and more apt to pick up what a ct scan might miss.. I know people in the PC area prefer to use the pet scan as they say the ct scan is not always conclusive..

Please keep us in the loop and hope that you have a day without pain today.. hugs

[TruBlu]

I wish it was gallbladder, but I don't have one anymore. I never had stones, but they took it out a few years ago because I was having a similar pain. They said that the pathology on it was bad (?), so it was good that they took it out. They didn't really explain what they meant. I guess I should have insisted on more info. I might have to call them and get the path report.

So, I'm off for my CT scan at 10:00 today. Please pray for no findings. I'm really scared - not for myself, but for my kids. I'm a really cool mom, so they need me around for a long time!:rotfl:

[Mackey Mouse]

Hugs Honey.. I know you are a cool Mom and they do need you.. all children need their parents..

Please let us know how you did today....I am keeping you in my thoughts and prayers.. Try not to worry....Tom always says to me, why worry about what you cannot control...works for him, but me, I worry too.

Big hugs.. keep us in the loop..

[TruBlu]

The CT yesterday went well. No results yet - I'm hoping that is a good sign. They said that it would probably be Tuesday before I heard from my doctor since Monday is a Holiday.

[TruBlu]

Forgot to mention - the new blood pressure medicine that I was taking has a very rare side effect of causing pancreatitis (no idea how to spell that...)!!! I found that on the internet and printed it out to show my doc. So, he switched my medicine. Wouldn't it be a miracle if that was the problem???::yes::

[Pea-n-Me]

Forgot to mention - the new blood pressure medicine that I was taking has a very rare side effect of causing pancreatitis (no idea how to spell that...)!!! I found that on the internet and printed it out to show my doc. So, he switched my medicine. Wouldn't it be a miracle if that was the problem???::yes::
That's good. (can't get the wink smilie to work)

[I Heart Disneyland!]

I went undiagnosed for about a year. I don't know your symptoms but do know that it's difficult to go through test after test and not know the outcome. :(

[Mackey Mouse]

Pancreatitis is nothing to fool with.. Have you seen the gastroentrologist yet? If not, make sure you mention all this to him/her...

How are you feeling now that they changed you BP meds?? Do let us know how you are doing..

Take care and keep plugging..

:)

[jann1033]

Forgot to mention - the new blood pressure medicine that I was taking has a very rare side effect of causing pancreatitis (no idea how to spell that...)!!! I found that on the internet and printed it out to show my doc. So, he switched my medicine. Wouldn't it be a miracle if that was the problem???::yes::
that would be fantastic..here's hoping

[TruBlu]

I am in pain and FRUSTRATED!!!!!:mad: Sorry, but I just need to vent....

I had my CT scan last Friday (1/12). Yesterday morning I couldn't take it anymore, so I called my doc's office and asked about the results. They promised to "call me right back". WELL they called today at 2:30 and read the report to me. I asked if there had been any changes since my CT scan back in Nov. 06. She paused and said, that is the report I have. She didn't even have the new one!!! She again promised to find the new one and "call me right back"..... Meanwhile, I'm going crazy!!!

AND I've called every day for 2 weeks now, but I can't get my GI doc to see me before 1/31.

It just seems like nobody cares....:sad1:

OK, enough self pity. I feel better now. :goodvibes

[Pea-n-Me]

We care!! :grouphug:

[TruBlu]

Thank you!!!! You guys are keeping me sane!!!!:grouphug:

[Mackey Mouse]

We are here.......I had my other hat on and was elsewhere on the Dis, but you have my attention..

You need to rant and rave and scream and yell at these medical professionals.....I am getting annoyed here too...

Sending hugs your way and lots of positive energy.. do not let them wear you down, fight for your rights and get some answers..

When is that gastro appt??

[TruBlu]

When is that gastro appt??Well that is a whole other can of worms! It is scheduled for 1/31, but I'm not sure if I can get them the results of the CT scan. I called today and the lady in medical records at the hospital said that I would have to mail them a letter to request the records. She said that I could not pick them up myself!:confused3 When I told them when my appointment is scheduled she said "Oh, we'll never get them there that fast.":mad: It is 2 weeks away!!! She said my best bet would be to arrive early for my appointment and have the GI doc call and ask them to fax the report that day. I asked if they could just fax it sooner, but she said they couldn't.:mad: :confused3 :mad:

So, I called my primary care doc's office today to ask if they could get me in with a GI doc at the hospital where they have the records. They said they would try, and AGAIN they were going to call me "right back". Still haven't heard anything....:confused:

SO FRUSTRATING....:sad2:

[Pea-n-Me]

Frustrating, I agree. I don't think I'd pick a GI doc based on what I think might happen with my medical records. I'd go online, check profiles, and pick the best GI doc I could find that specializes in the problem I'm experiencing.

I'd make an appointment for as soon as they could get me in, even if it required calling every day to check for cancellations. In the meantime, I'd find a good person in that doc's office who knows what's going on (like the clinical manager, or the doctor's own nurse) and has the power to make things happen. I'd explain my story as briefly but realistically as I could, and try to get them to join my crusade to get answers (who wouldn't want to help you?). Believe me, the doc's office can get your films very quickly, regardless of what they tell you in the medical records dept. What do you think would happen if there was an emergency and they sent for your records? They would get them right away. This happens all the time...


I had this a similar situation me when I was having my abdominal pain. There was an absolutely wonderful nurse in the GI doc's office who helped me a lot and made things happen. You just need to connect with the right person.

So - don't cancel your present appointment. Talk to someone in the office there (not the person who answers the phone; ask for the manager or even visit the office in person if you have to to meet the person I mentioned above) and see a) if they can take you sooner because you're in a lot of distress and b) if they can call for your films so the doc will have them in hand when he sees you. Don't stop until you get what you need. I wish I could help you. :hug:

[Pea-n-Me]

P.S. the only warning I have for you is that, even after you see the doc, you still might not have answers. More frustration... My visits to the GI doc generated bloodwork, medication, more tests, further visits with him, more tests again, and eventually a referral to a surgeon to remove my gallbladder (despite negative tests). The surgeon ordered more tests, which once again were negative, and he rightfully would not take it out. I ultimately got no answers on what was causing my pain and was left on my own to deal with it and suffer in silence. This went on for a very long time. It was only when I figured out myself that one of the medications I was taking caused biliary colic and took myself off it that the pain finally went away (it's still there a tad, but nothing like it was before when it was really bad).

I hope you can find help and answers. :hug:

[jann1033]

sometimes i wonder what happened to the medical profession and when they stopped caring.....not all but lots seem to have the patient welfare last on the list...i am supposed to go to a surgeon...made an appointment( first available was 2 months down the road) the day came, dr cancelled due to surgery OK... that can happen, the nurse was snotty with me when he finally got in the office at 5:30 and she wanted me to come in right then which i couldn't ( my appointment was for 1 and i had to baby sit granddaughter that day, i had someone to watch her for me for the time of my appointment but not for almost 5 hrs later) so she was mad as could be and told me the next appointment was for guess when, 2 months later...uh this was for a problem that keeps causing cellulitis they almost couldn't cure last time it got bad ( in the hospital for 5 days, bed rest for another month) so i mean no rush unless i don't feel like losing my leg or dying:confused: :confused: :confused:now i am just going to start over with another dr...i don't want to deal with someone like that anyway

[TruBlu]

now i am just going to start over with another dr...I think I am getting to that point too. I had my follow-up with my primary care today. He asked me if I thought that my pain could be anxiety! It was very discouraging. Could anxiety really cause severe pain that would wake me during the middle of the night? How about swollen lymph nodes and fever???

My answer was... "I wish!":rotfl:

[jann1033]

I think I am getting to that point too. I had my follow-up with my primary care today. He asked me if I thought that my pain could be anxiety! It was very discouraging. Could anxiety really cause severe pain that would wake me during the middle of the night? How about swollen lymph nodes and fever???

My answer was... "I wish!":rotfl:

my bold.... all i can say is:sad2: :sad2: :sad2: :sad2: :sad2: :rolleyes: :rolleyes:
i think that dx is in the very back of medical books in the Trouble shooting section under the" if you're stumped tell them it's all in their head" subheading

[Mackey Mouse]

Horrifying... I am so annoyed here..

So you cannot find out what it is so tell the patient it is in her head....I am more than ticked..

It reminds me of when I had my first baby..this is kind of funny, but not then. I was 23, husband could not be with you at this hospital in 1970... Long story short, long labor, high forceps delivery, and I have a broken bladder..

I could not go the bathroom......the nurses had me putting my hands in a bowl of cold water, filling the bathroom up with peppermint, drinking beer in the hospital (believe that one) only to overload the bladder and be catharized again. I came home from the hospital with my baby with a catheter for a month..

Bottom line, I look back now.. high forceps delivery, baby laying on my bladder too long, they either nicked my bladder pulling her out or I had a bladder infection from prolonged labor, but they tried to tell me it was in my mind.. Took me a long time to get over this and have another baby.....and believe me I spoke up for my rights with my second one...

Just a humerous story about nurses and doctors back in the day.. but now.. c'mon, get your act together and take care of your patients.. geez I am angry over this..

Hugs to TruBlu, you keep pushing and to Jann.. hugs to you too... I want a day without pain for both of you. :grouphug:

[jann1033]

not to get off trublu's op but before i got cfs i just assumed you got sick went to the dr and they took the proper action then hopefully you got better... my first dr (after i got cfs) was great...he was willing to do research etc and passed it along to me, and i know it was frustrating for him too( he used to tell me to come in next time i had a hang nail just so he could actually know how to fix one thing i had wrong with me :rotfl: ) but i felt like we were in it together and he had my best interests at heart...too bad he moved...

this was during the cfs=yuppie flu days ( not that they have really changed much with most drs) and yet he never once even insinuated he thought i was just a nut job, lazy or any of the other things literally 98% of every other dr i saw either told me out right or wrote in my chart...can't tell you how many other dr offices i left in tears dragging my "perfectly healthy" body along cause i knew i was seriously ill and got no help what so ever. an eg of how they haven't changed with cfs though is last night went ot diabetes education class...a hallmark of cfs ( like common enough and specific enough some feel they could use it as a dx factor) is what they call post exertional malaise which is a fancy smancy term for if you exercise or overdo, you can't get your rear out of bed the next day or two...so i know it's important to exercise to keep blood sugar levels low but it's not in the cards for me usually...the instructor is an endocrinology nurse, cfs impairs adrenal , pituitary and hypothalamic function so you'd think she know at least a smidgen about it..she asked me about what exercise i do i said about the cfs, she kind of smirked, said well how about 3-5 x a week for 5-15 mins a day with WEIGHTS...i said that is not an option..thinking I'm doing good to shower 3-5 x a week and lift the shampoo bottle to wash my hair:) :) :) who can educate her if she doesn't want to be educated???? end of that part of this rant:rotfl:

but it isn't just cfs...i hear more and more horror stories of people who simply don't get the care they need because the drs are either to lazy, narrow minded , to overbooked to spend time to listen or just plain to dumb to look outside the "usual suspects"... i just don't get that. when did drs start to assume 1/2 of all their patients were either hypocondriacs &/or needed a therapist?????

you want to get your blood boiling sometime read the book osler's web (can't remember the author's name) it's about how the cdc and nih have handled cfs but shows the politics involved in "illness" and how it could affect everyone's life...when the book first came out the author was called every bad name in the english language..till the gov found out the nih had "lost " or "misspent" something like $14 million congress had earmarked for cfs research...then the critics kind of shut up.

[TruBlu]

So I saw the GI doc yesterday. Still no diagnosis.... I am having more tests done on Tuesday. This one sounds REALLY fun :eek: a 24 hour fecal fat test :eek: , an upper GI (with something about the small bowel....), and a few xrays. She had a list of 4 possible causes for my pain, but quite honestly I only heard one of them. Pancreatitis! After she said that I forgot the others. I think I had a small panic attack.

I see a surgeon today for an opinion on the CT scan. (There were some benign soft tissue nodules and an umbilical hernia that they don't think is causing the pain, but you never know...)

Thanks again for all the prayers and good wishes. I am doing a lot better - no ER visits lately! :goodvibes My pain has even improved quite a bit - still hurting, but not as bad.:thumbsup2

[KPeveler]

good for you... even if they dont have answers right away, it is very helpful to feel more human!

i am off to call drs myself... i have decided to write out a letter explaining my history to the dr, since i have had many many drs in my life (but i never see them more than once - the problem with military clinics and health centers) i want to write things down, so she can think of things ahead of time, and i wont have to sit there and explain... drs can get impatient if you are making them late by having a long medical history. i hope this will work!

[hematite153]

I'm glad you got in to see the dr. Good luck with the new tests.

I understand the frustration of drs assuming "it's in your head". I have fibro but according to most drs that's not possible unless I'm older, yet I can trace it back to elementary school at least. I've found that when something else is wrong I try to avoid mentioning the fibro because it leads to an assumption that I must be completely healthy and all problems are just in my head.

I'm not a dr, & have no medical training, but your symptoms sound similar to a friend of mine who was diagnosed with crohn's in her late 20's. It's supposed to show up earlier but can, apparently, do some really weird things if its missed.

good luck!

[Mackey Mouse]

TruBlu.. please try not to worry here.. please.

Just get through the tests... I have had an upper GI and the lower intestine thing.....They make you drink the barium and flip you around on a table to see how it goes through the esophagus, it was to determine if I had reflux...then they make you wait to see it pass through the lower intestive into the small bowel....in my case it went there fast. I think they were looking for colitis or one of those, which I did not have. Test was a no problem at all...drinking the chalky stuff is not pleasant but you can do it..

I do have reflux though and live my life with it.. I can tell you what foods will trigger it and try to stay clear of them.

I did some reading on pancreatitis tonight andI think the reason she ordered the fecal fat test is to see if you are breaking down fats in your system with digestive enzymes from the pancreas...I am guessing that from what I did read. If it is Pancreatitis, then the digestive enzymes are not being produced properly.....Google pancreatitis and do some reading.. remember this, knowledge is power.

You have to get an answer to what is causing this pain.. hugs and more prayers coming your way..

[Deesknee]

TRUBLU - :grouphug: I hope and pray you get a fixable answer soon. I don't know much about medical stuff, but I know you mentioned an umblical hernia (DS has one), but a hyatis (bad spelling sorry) hernia can be very painful - abdomin, back groin area, upper legs. My Grandmother had a severy Hyatis hernia years ago they operated twice on it. She lived many years without pain or with little pain/discomfort. In her 80's it did start bothering her again, but she decided not to operate. She is 94, lived a great active life until she ended up in a nursing home a few years ago (do to a fall nothing to do with the hernia). Hopefully the GI will show something, they will fix you up and you will feel better than ever. :cloud9: Who knows, maybe you can guilt them into an apology too! :laughing: Anyway, prayers.

[TruBlu]

Please send some prayers my way. I have my follow-up with the GI doc tomorrow. I hope she will have the results from my latest round of tests. I am also praying for really good news!! Hopefully an easily fixable reason for my problems.:goodvibes

[safetymom]

Prayers are on the way. I am hoping to hear good news.

[hematite153]

Please send some prayers my way. I have my follow-up with the GI doc tomorrow. I hope she will have the results from my latest round of tests. I am also praying for really good news!! Hopefully an easily fixable reason for my problems.:goodvibes

Thoughts and prayers are coming your way.

[TruBlu]

Test results were good!!!:cool1:

Still don't know why I'm hurting...:confused3

But, we have a game plan!:woohoo: She is going to treat me for IBS and hope that helps the pain. She also wants me to go ahead with my surgery to repair my umbilical hernia and remove my desmoid tumor. She is hoping that these treatments will get rid of my pain... I hope she is right!:) I've got a date with the mouse in June. I've made lots of ADR, so I need to be able to eat!!!popcorn::

Thanks for all the support!!!:love: I love you guys!!!:love:

[OneLittleSpark]

:goodvibes :hug: :cheer2: and feel better soon!

[TruBlu]

:sad1: The surgeon didn't agree with the GI doc.

So, more testing for me...

I have a MRI today. Wish me luck! :goodvibes

[OneLittleSpark]

Too late to wish you luck, but I hope it went well :hug: