Hell Hath No Fury as a Patient Misdiagnosed

I just really felt like giving up today.   I was so hoping that my new MRI on the 3T machine would give me direction.  

Somehow, he condensed 300 images to a 3 sentence paragraph.  He mentioned the "several punctate foci of FLAIR hyperintensity in the deep bifrontal white matter probably microangiography in nature".  He never even mentioned the Chiari Malformation that 2 neurologists have seen.    Oh, yeah and the "no infarct" cr__.

I was so distressed.  I just wanted to give up.   Then I got mad---really mad.

I found the radiologist office and called.  The recep. tried to make me go away but I held my ground.  I told her that "he might want to know that he had missed something major".  I told her to ask him if the Chiari Malformation had "spontaneously disappeard" .

They called me back with a message from him.  He will "re-study the films and ammend them, and "please let your doctor know that they will be receiving an ammended report.

Positive LP and negative MRI geeesh!!

I know he had to have missed alot of things to miss something that obvious----

Anyone need me to call their doctor? :-)

[tonyad]

  Hey You...I am so sorry that once again you have had such a terrible experience w/ a condescending doctor.  GOOD for you in jumping right back up and doing what you needed to do to get some answers!  

   I also agree w/ Lulu in that a GOOD Neuro will look at the MRI (disc) themselves and not really  rely on a radiologist report!   That is what my Neuro does anyhow.
So when is this ammended report supposed to be sent to your Neuro??  I would stay on top of them to make sure they get this done!

   Try and relax the rest of the night and be Proud of yourself for being Pro Active in your own health care  :)

Big Hugs to you....
~Tonya

[johnniebear]

Oh my,   my Neruo says that the radiologist might spend FIVE minutes looking at the MRI and gets to charge a boat load $500-$1,200 for their results.

My Neruo likes to look at the disk first so that he isn't influenced by the report.

Good for you for standing your ground,  seems to often we all have to be stubborn when speaking with some of these providers .


Good luck
John.

[helen41]

Redflame is hot!! Good for you! I just got my MRI results back from an independent reading. You might want to consider getting a second opinion as well if you have lost trust. They are called EradReview and people can upload their images.
For me, they said it was a limited study as some of the sequences were missing, including all the diffusion weighted images. They did tell me in an email, however, that they didn't believe redoing it would change the result, which is most likely microvascular ischemic disease. Now I just need to figure out if I paid for the missing sequences and if I have redflame gene to go demand some money back!

[Sarahsmom46]

Yes, as a matter of fact I can use your proactiveness right about now.  Need my neuro's staff raked across the coals when you have time.  :)

I think radiologists rush through these films and only write down what they see in the first 2 minutes or less and don't go any further than they have to.  The bad part is that they put this in a report that a lazy neuro would just read and take as gospel not bother looking at the films him/herself.  If you have a lazy neuro then you definitely made a good decision to get this looked at again.

Missing the CM, that is pretty interesting. It makes me wonder how much more gets missed in these expensive and time-consuming tests.  Hope you get this straightened out.  

Julie

[Lulu54]

If it gves you any comfort, most neuros don't look at these anyway - they want to read the MRI's for themselves without any bias.

don't forget to breathe!
Lu

[JemmAus]

It's just amazing.....I ahd two MRIs done in Queensland and reported on by two differnet radiologists, and BOTH FAILED to see obvious lesions that my wonderful new neurologist pointed out to me. It's been nearly 3 years of hell.

One wonders how many people suffer because radiologists and / or neuros are not looking properly.

My neuro read the reports, said, hmm, sounds like migraines from that. THEN he said, lets look at the scans, and said OH THATS MS NOT MIGRAINES!!

hmm

Jemm, who cannot stop crying today......

[RedFlame]

I know I guess I do get a little hot under the collar, sort of a hot temper.  I like to think of it as passion though;-)

Johnniebear--Wouldn't it be nice if we could sit at a desk, look at interesting pictures and get paid thousands?  Sounds good to me.

Helen41, I wondered what happened to you and your films.  It really sounds like your result was mixed though.  Does the Ischemia account for your symptoms?  If you need help getting your money back from the other images----I'm your gal!

Sarahsmom,  I do believe you are right.  Now I know.  They probably have the report done before we get up off the MRI table.  Just let me know if you need your neuro-staff to stand up to attention!

Lulu54---ah---thank you!   I really need to hear your calm voice.

I really didn't know the truth about radiologists----now I do.  Thank you

[tonyad]

  Hey You...I am so sorry that once again you have had such a terrible experience w/ a condescending doctor.  GOOD for you in jumping right back up and doing what you needed to do to get some answers!  

   I also agree w/ Lulu in that a GOOD Neuro will look at the MRI (disc) themselves and not really  rely on a radiologist report!   That is what my Neuro does anyhow.
So when is this ammended report supposed to be sent to your Neuro??  I would stay on top of them to make sure they get this done!

   Try and relax the rest of the night and be Proud of yourself for being Pro Active in your own health care  :)

Big Hugs to you....
~Tonya

[RedFlame]

Jemm,  I'm so sorry to hear that you have had 3 years of hell!  I was just wondering about everything that was said---I wonder if the second radiologist doesn't want to 'step on' or change the first radiologists diagnosis.  I know doctors are leery about that.  

Untold suffering I am sure from lazy professionals

I'm sorry you are so sad.

[RedFlame]

Hi Tonya!  It's so good to see you!

Sometimes I lose sight of the fact that this is a journey.  There is so much that I am learning on the way, and sometimes it is simply to persevere and continue to advocate for myself.  It's the hardest thing----to stick up for myself.

I don't know exactly when it will be sent---it should be interesting to find out.  They also requested that I call my neuro to let her know she would be receiving an ammended report.  He should pay me for saving his hind end.

I will stay on top from now on.  

It's really good to see you back on the forum

lois

[Lulu54]

One other thing - be sure when you see this neuro you have a copy of your MRI with you - just as a back up.  You want this doc to look at the pics and not the report.

When you call about the amended report, you might even ask if the doctor reads the MRI instead of the report and let them know that the radiologist skipped significant findings.  

are you breathing yet?  LOL

Lu  

[jean_619]

RedFlame --

I have an MRI at Henry Ford in Detroit on Saturday -- do you want to come with me and keep the radiologists in line?    hee hee

Jean

[slightlybroken]

I love your spunk! Maybe you can call some of my doctors too LOL. I can imagine this happens a lot..and by the way..I've never had a neuro look at the MRI films themselves. I've always had ones that went by the radiologist reports. The good neuros that looks at the films themselves and can interpret and see things have been elusive to me for the past 3 years. So do what Lu has suggested as a backup and make sure they interpret for themselves.

Would it be nice to just be a patient and not have to make people do their jobs?

[lovemy6monkeys]

Woohooo!! Can I borrow some of your feisty today? I have my appointment to go over the LP results, but no matter what they are I'm going to push to be started on DMD.

~Jess

[steph74]

Red, I'm glad you were able to get the radiologist to review your films again.  I may have asked this before, but if you have Chiari Malformation, is there a reason the neuro is not following up on this as a possible cause of your sx?  CM is a great mimic of MS.  You needent always have headaches w/ CM.

[RedFlame]

Lu—yes I am finally breathing.  This process really feels like a battle to me at times.  It certainly shouldn’t be.  I will mention my concerns like you said.  

Jean—Hi!  Do you know if the machine is a 3T and if they are following MS protocol?  Sure I will go with you and make sure they do their job:-)

Slighlybroken and lovemy6monkeys---prepare yourselves with the knowledge and Quix. Has provided for us.  You go girls!

Steph,  I don’t understand this either.  My malformation is minor with 5mm on one side and 3mm on the other.  My neurologist say that the CM does not fit my symptoms at all.  My symptoms are textbook MS they say whereas the CM symptoms aren’t there.  I don’t get it either though.  

[steph74]

Hi Again,

I copied this list of CM from the NINDS website:

"Individuals with other CM types may complain of neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected. Symptoms may change for some individuals, depending on the buildup of CSF and resulting pressure on the tissues and nerves."

and this from Mayo:

"Neck pain (running down the shoulders at times)
Unsteady gait (problems with balance)
Poor hand coordination (fine motor skills)
Numbness and tingling of the hands and feet
Dizziness
Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
Vision problems (blurred or double vision)
Slurred speech

Less often, people with Chiari malformation may experience:

Ringing or buzzing in the ears (tinnitus)
Poor bladder control
Chest pain, in a band-like pattern around the chest
Curvature of the spine (scoliosis) related to spinal cord impairment
Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep "

You can see why CM is such a significant mimic of MS!  

Your case must be very difficult to dx, with the CM and some lesions!  Either or both could be causing many of your sx.  

Good luck with the dx journey.  I hope your neuro is working hard to figure out what's going on with you.

Stephanie

[jean_619]

I asked for a 3T and they said it was a 3T, but I didn't know there was a certain protocol for MS.  The "prescription" for the MRI does say that I have epilepsy and MS -- so I'm guessing they will use an appropriate protocol?  I'll have to ask them when I get there.  And I'll have to make sure they are using the 3T.  I don't trust anyone anymore -- I will be asking every question two or three times from now on.

[RedFlame]

Good for you Jean.  You really do have to be on top of them.  

I reminded them of the 3mm slice with no gaps and the need to wait 5 minutes after the injection.  They took larger slices and left gaps though and didn't wait the full 5 minutes.  They are in such a hurry and sometimes they just do what they want to.  

I would get on top of them though like you said. I think you are going to be fine there where you are having them done though.  It's a big facility that deal with more specialty illnesses.  I am keeping my fingers crossed for you!!

[helen41]

Hi Lois- just wondering- did you ever hear more about the amended report?

[RedFlame]

Hi helen41,

I thought about the dr.'s request for me to "let my doc know there was an ammended report come".  I already saved that guys b__t.  I thought I should let the s__t hit the fan if there was any s__t.  

I have my appointment with University MS Clinic next week.  I will give the clinic the 'original' report and let them figure it out.

I did find another error on the pathetic 3 sentence report.  He talks about a specific issue with my sinus and refers to the left sinus when it's the right one that has always been an issue.

Just goes to show you---you have to stay on top of EVERYTHING!!