Undiagnosed and going crazy!

[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.

 

[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 .......
but i digress as i was
just originally stopping by hoping trublu had heard something good

 

[TruBlu]

Thanks for all the concern!
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)!!!

 

[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.

 

[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 . He wanted me to go to the emergency room, but I've already tried that! 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. Not really, but I am close!

 

[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

 

[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!

 

[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???

 

[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???

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???

that would be fantastic..here's hoping

 

[TruBlu]

I am in pain and FRUSTRATED!!!!! 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....

OK, enough self pity. I feel better now.