Undiagnosed and going crazy!

[Pea-n-Me]

We care!!

 

[TruBlu]

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

 

[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! When I told them when my appointment is scheduled she said "Oh, we'll never get them there that fast." 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.

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....

SO FRUSTRATING....

 

[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.

 

[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.

 

[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 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!"

 

[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!"

my bold.... all i can say is
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.

 

[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 ) 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

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 a 24 hour fecal fat test , 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! My pain has even improved quite a bit - still hurting, but not as bad.

 

[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 - 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. Who knows, maybe you can guilt them into an apology too! 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.

 

[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.

Thoughts and prayers are coming your way.

 

[TruBlu]

Test results were good!!!

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

But, we have a game plan! 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!!!

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