Strange findings MRI

[hoping]

Over a mo. ago I had a thoracic/lumbar MRI as neurologist questioned whether I may be having another lesion on spinal cord.  Had sudden attack of major upper body pain like compression/burning and when I went to walk collapsed, zippo strength to hold me up.  Tried again, but fell into EMT so ended up in hosp. on high dose steroids.  Have a history of this happening for years, but no concrete diagnosis since blood tests are negative though SjS symptoms are all there.

When I got the report later to show a different doctor, it was negative for lesion or compression on cord.  However, it said this "Soft tissue windows show a few prominent loops of small bowel within abdoment.  The stomach is also moderately dilated.  There is a dilated urinary bladder or cystic mass.  This is incompletely evaluated."  On impression it says "Mildly dialted loops of small bowel with dialted stomach.  If the patient has bowel symptomatology, a CT scan would better evaluate."  Then, "Rounded focus of abnormal signal at the pelvis, which could be related to the uterus or ovaries, or could be related to a distended, debris-filled urinary bladder.  Pelvic ultrasound or CT could better evaluate."

None of these items were addressed while in the hospital for one week.  This was over a month ago.  I have been having bowel issues, going excessively or not going at all.  And have a neurogenic bladder with frequent UTIs.  In another section of records, it read I had multiple bacteria in urine, but I was never put on antibiotics.

Healthcare is so dang frustrating.  I was thinking of bringing the MRI report to new rheumy (as old one is convinced I have fibromyalgia and should stay away from Prednisone at all cost) and seeing what he thought of it.  GP was rather ticked at me and tried reducing high dose Prednisone down to 20mg.  I could barely stand and walk 10 steps with walker and help of RN to get to the toilet.  Then he reluctantly brought it back up again.  Everyone thinks this is all in my head.  I wish they could be in my shoes for just 24 hours and then maybe they'd take me serious and look for a cause.

Any suggestions??
Karin

[Pooh]

Hi Karin,
As you know none of us are doctors, that being said, I can only give you my personal opinion.  If it were me I would ask to be referred to a digestive disease doctor.  If you are seeing a urologist for your bladder I would definitely discuss this with him/her.  For the other problems I would definitely see a gastro (digestive disease MD). 

I hope you get some answers soon and a lot more relief.

Pooh

[Dolly Dimples]

   OH ! poor Karin you certainly have got something to contend with, and certainly need some answers.. Sadly as Pooh said none of us are experts in any field, and I probably have the least of any health issues to answer you... You need to see the people that Pooh has suggested and stand your ground with them... Far too many of these medical pros think they are so high & mighty, fortunately it is only a minority!     Having it all in our mind is just a scapegoat for them!!
                  Hope you get some answers soon, and wish you well.  Dolly x
             

[Reenie]

Hi Hoping,

A belated "Welcome" to the boards!

I can totally empathize with how frustrating healthcare can be.  Like you, I had some strange findings on an abdominal CT scan last summer, that were not mentioned nor followed up on by the ordering doctor.  Essentially, when I finally got copies I took them to my PCP, who took the strange findings seriously and ordered follow up tests.

My results showed something sort of similar to yours, "multiple dilated and fluid-filled bowel loops" and "dilated and markedly thickened gallbladder, concerning for carcinoma".  It also mentioned a distended bladder.  Anyway, when I gave my PCP the results, she ordered gallbladder studies first (which came back normal--whew!), and then referred me to a GI specialist for the bowel stuff, which I am currently undergoing tests for (blood & stool samples first, with a colonoscopy likely in my future).

I agree with Pooh and Dolly.  The findings should be followed up on.  Does your PCP have these results?  If so, please discuss them with him/her and hopefully get in to see a gastroenterologist and urologist to follow up on the findings.

I have learned that most specialists only focus on the findings of the particular body parts that they specialize in, and often "skip over" other incidental findings from unrelated organs (even when a report says "concerning for carcinoma").  It's not only frustrating, but scary...and yet another reason why it's important for us to always get copies of results.

Good luck and good health to you,
Reenie

[ktfabian]

Wow Karin-

You're certainly going through he** with the medical community.  My first question - how could any of this possibly be "all in your head" with the tests showing what they do?  I get so frustrated with doctors who can't see past the nose on the smug little, egotistical faces!

Do you feel your PCP would take these tests seriously, or is he/she among the doctors that just doesn't have a clue?  If you can't get that doctor to take this report seriously, can you self refer to a specialist?  If your primary care doctor is keeping you from a specialist that you obviously need to see, I would fire him or her and find a new PCP.

Who was the admitting doctor when you were in the hospital?  I think I'd put the doctor on the spot and say, look," I have my records and I would like to know why the follow up tests recommended by the doctors who did my MRI were not done.  I you're unwilling to follow up on these issues, I would appreciate a referral to the type of doctor who can address these issues best."  If he/she still won't provide a referral, it's time to get another doctor and maybe an attorney.

I hope you get the tests you need right away and that the results are something easy to work with or fix.
Tracy

[hoping]

The primary care was the one to order the MRI in the first place.  I had a bad bout of diarreah on my last day in hospital and I asked him what possibiilities of celiac were and he said absolutely not as both his kids had this and he knew way too much on this disease.  Later, in ofc. I told him I was still having some persistent diarreah and he had me  do stool testing.  Never heard back results on it.  For some reason, he has grown increasingly sick of me, probably because every note from a specialist he gets says I am off the deep end.  For the longest time, he was my biggest advocate, not anymore.  Could be he just scanned the report and saw negative for spinal inflammation and did not read much more beyond that.  The suggestion for pelvic scan was on the last page by itself.  I thought I'd see about rheumy first, in less than a wk, get the SjS diagnosis.  But you think I should go ahead and pursue this with primary care before then?

He is usually good about referring me on.  I do have a urologist, he is so-so, likely clueless on Sjogren's, but still could make a followup visit with him and bring up cystitis/MRI findings.

Barely hanging on as is,
Karin

[hoping]

Primary care said findings were not unusual, as i had case of diarreah and that explained loops of bowel in abdomen and that cysts on kidney were not unusual and show up on MRI as findings, but in actuality are not anything big when studied further.  You can have small cysts on kidney and it is not a huge thing.  HE had double-checked the findings with radiologist and they agreed not worth pursuing further. 

I asked him why so many of my notes said 'pt apparently had a lesion' or so on.  I told him many of docs this in my records.  I told him I had clear documentation of my 2 neuro. episodes one which landed me in hosp. for 2 mo. with paralysis in 1998 and another with clear lesion on spinal cord in 2006.  Not sure why they dismiss all of this.  He said I was getting hung up on a word.  Said perhaps he words it that way because he didn't actually see MRI, so I offered the MRI report to him as documentation, but he said that wasn't necessary.  Maybe I am way too paranoid?!?  Let's face it when you feel like you want to prove something is way beyond just fibromyalgia- you do tend to get hung up on how trite they interpret and word your medical history.  Its way better to never review your records and know how they actually view you.

See new rheumy tomorrow.  Hoping he's open to hearing my 'story'
Karin

[Scottietottie]

Hi Karin 

Good luck with the new rheumy. I hope you've found a good one.

I can't understand any of the docs dismissing episodes of paralysis. Have you tried the approach "OK - so you're baffled as to the cause - but how about treating the symptoms please?"

Never heard of fibro causing paralysis.

Let us know how it goes with the rheumy!

Take care - Scottie 

[irish]

Just to let you know that many docs do the "possibility", "apparantly" and many of the words that lean toward something but don't say it speciifically. That is just the way they are---don't want to state something for certain cause what if they are wrong. I think they feel they get in less trouble if they aren't as specific.

Also, just because it is not documented as such doesn't mean they don't think we have it. Many times they avvoid using the for certain terms and diagnosis to help keep the bad diagnosis off of our health record. Soon as the insurance company spies it we become less in insurable and health insurance can be impossible to get or very expensive. Doesn't hurt to ask them though. I have a bundle of doctors notes that make me sound like a bumbling idiot that needs to be locked up. I sent a letter to that clinic letting them know about my diagnoses that they said was all in my head. Irish