What should I ask the specialist?

[HollyHuney]

Hey folks, Just wanted to get your thoughts on the MRI films I have in my personal photos. I went through my MRI films again, and found some other areas that I question. I am going to bring these specific films to the attention to my MS Specialist on Thursday, but just wanted to get your oppinion on them.

I am really curious about App Diff Co Series 501 and Expo App Series 500 films. What is that on my cerebellum?!?! Take a look at them. I am really confused. I have done 100's of hours of research trying to find another MRI online that has a spot like that in that particular area. I have found images of a similar spot on other MRI's but not in the cerebellum. It was always towards the front part of a lobe.

Anyone else see something like these on their MRI's?

Any questions or suggestions to ask/talk to the Specialist on Thursday with would be helpful.

Thanks a bunch, folks.

Holly

[HollyHuney]

Thanks for all the suggestions, folks. And I have to admit, that letter is the bomb! Very good writing. I will attempt to call Dr. S again and see where it takes me. I tried to get in with a neuroradiologist but there are none in the area and my insurance doesn't cover the visit, so I am S O L there!

*sigh* Back to square one!

H

[Karen99]

Nancy has a point.  There is always the risk of alienating doctors.  I live in a huge city so this is not a problem.  It would be an appropriate step to call Dr. S again for assistance.  See what he says or will do for you.

Good luck.  It should not be this difficult to get a straight answer.  

[Nancy_LA_MA]

When approaching a new doctor it may be best to not mention right up front any bad experiences with the previous one - keep that til later, after you've developed a working relationship with the new one (I realize you'll be presenting test results and MRIs in the beginning).  They might know each other or have worked together on some case before.  It's not be just specialists - regular general practitioners probably do the same thing.  They don't want to be seen as working against another doctor.  It's possible that the  practice of not taking transfers from fellow doctors (especially in the same geographical area) is fairly standard, I don't know.  Does anyone know about this?   In the early days after moving here I had a problem trying to switch doctors (general practitioner) - another doctor in town wouldn't take me on.  

I would definitely contact Dr. Stankiewicz again.  Maybe he can intercede in your behalf.  

[Sorry, I've written and rewritten, trying to word things just so - to express my opinion and hope not be seen as being negative.  I'm only speculating here.]  

[Lulu54]

Karen - Bravo! Well done with the letter .... that should get some attention.

be well,
Lulu

[Karen99]

Hi Holly.  Your frustration is well founded.  I would want to know what that rather large black hole is that shows on your MRI.  Perhaps it's nothing to worry about - perhaps it is.  If it was from a previous stroke, you may be at a higher risk of stroke at a particularly young age.  If a stroke is confirmed, there are steps you can take to protect yourself from another stroke.  They say that "honey" catches more flies than being aggressive, but that does not always ring true when navigating your way through the ineptness of some doctors.  

You have some choices to make.  Decide whether to stick with your current neuro or go elsewhere.  You need to obtain a copy of the written report of this MRI.  You need to find a neuroradiologist to reread the MRI.  Get a written copy of that too.

A very wise friend and attorney gave me a good piece of advice that has served me well over the years....PUT IT IN WRITING!!  Don't be afraid of making these turds mad.  Write something to the effect of:

Dear Dr. Nimrod:

Thank you for seeing me on July 4, 2009.  During this visit we discussed the MRI of my brain MRI dated 06/08/09, which was done without contrast, that showed a rather large "black hole."  At your suggestion, and despite my best efforts,  I have not been able to secure the services of a neuroradiologist to interpret this MRI.  No one is able to explain this abnormal MRI.  It concerns me greatly because it was because of my symptoms that prompted me to seek medical evaluation.  

As we discussed, Dr. Knucklehead suggested that the cause of this black hole could indicate a previous stroke but no further evaluation was done despite my declining health. He also stated that the cause of my symptoms and declining heath are due to a psychosomatic disorder.  While I readily admit that I am anxious, and who wouldn't be with the disturbing symptoms of  one   two   three.?  

I find myself stuck in a situation where the referral you gave me is useless because Dr. Ridiculous refuses to see me because it is their policy to refuse referrals from another neurologist.  Therefore I am asking you if you can point me in the right direction to obtain appropriate care?  I am at my wits end and need relief of my symptoms until such time a diagnosis and appropriate treatment can found.

Sincerely,

LimboLand Huney

cc:  Fr. Ridiculous
      Dr. Knucklehead
      Insurance Administrator of Baloneyville

  

[HollyHuney]

Hi, thanks for the replies. I know I was completely baffeled, and P O ed because it makes me feel like I am back at point A! She basically told me that because I saw my first Neuro and also Dr. Stankiewicz that the new Neuro would not take me on. He would not take transfer patients. I explained to her that 1. Boston referred me 2. my current neuro (for lack of a better way of saying it) got his degree out of a cracker jack box! She told me that it didn't matter, the new Neuro would NOT see me. I was so upset I hung up and burst into tears. My first Neuro is not in the same practice as O'Connell.

I am sooo sick of all this. I really am. All I want is for an MD to just listen. I found that in Boston, but I can't keep making that kind of drive! (Finacially and physically)

I mean I thought it was our right as humans that if we don't like our doctor we can see someone else! Am I wrong? What happened to the hypocritic oath? Has there been an addendum stating that we can't see someone new?

UGH, I'm so frustrated!! Sorry to vent folks. But this has been going on for WAY to long. Plus, Boston wants me to find out what the big spot on my MRI films are because he doesn't know what it is. (See my pics for films of the big spot)

What's a girl to do?

[steph74]

That's unfortunate.  Are the two doctors in the same office?  I tried to get to see a second neuro at the University of ******* medical center and they didn't allow tranfers.  I know GW has the same policy (unless the first doctor asks to tranfer you).

I've never heard of a doctor just not accepting second opinions at all!

Actually, maybe you should call sometime and see if you can talk to a different receptionist and just tell them you're looking for a second opinion, instead of a tranfer.  Don't know if that will work.

Good luck.

Stephanie

[Lulu54]

Wow Holly, that is sure cold!  Did they give you an explanation why he has this policy?  Truthfully with that attitude I would venture a guess that you don't need him .

Lulu

[HollyHuney]

Hi Nancy and Welcome,

Sorry I haven't responded eariler. No, I have not seen O'Connell yet. Seems to be a real pain in the patootie to get into his office. I am going to call my primary again to see if they were able to get an appointment for me. O'Connell needs a refferal from my primary and all medical tests, labs, etc. before he will see me. HOPEFULLY, he will see me soon.

Thx,
Holly

Update:
Just got off the phone with O'Connell's office. They said that O'Connell doesn't accept transfer patients from another neuro. I asked the secretary why he won't see me since Dr. Stankiewicz told me specifically to see him because my current neuro won't do the proper tests and *****! She told me it didn't matter, he would not take me on as a new patient. So.... back to square one!

Great.

[Lulu54]

Nancy,
We haven't seen HH around here since late May - hopefully she is off enjoying summer.  I'm sure she will check in eventually.

Let me say welcome to you - I'm glad you found us here.  When you feel like it, please start a new post and tell us some of what is going on with you!

my best,
Lulu

[Nancy_LA_MA]

Late to the discussion - wondering if you've seen O'Connell in Northampton yet - haven't seen a follow-up post.  

[HollyHuney]

Ok folks, I saw the Dr. Stankiewicz, the MS Specialist, yesterday and here is what he had to say.

He could NOT dx me with MS ... at this time. I only have one lesion BUT all of my symptoms mimic MS. He has ordered a spine MRI with contrast to see if anything is going on there.

After a complete physical, he feels that there IS something going on. However, he cannot dx me at this time, He referred me to a Neuro that he specifically works with out here in Western MA.

I also asked him to go through the MRI films with me, especially the ones I had questions on. He sat me down and explained what was what on the MRIs . He also explained that I have at least one lesion, however, because my MRI was done without contrast, he couldn't be completely sure if there were more. With that knowledge he could not dx MS.

I then asked him about the 4 slices on 2 different series (500 & 501) He looked at them, looked at me and plainly said "I have no clue what that is! You have to see a neuroradiologist. He would be able to tell you exactly what it is."

It is so uncommon to find a doctor that will just look at you and I don't know. I was very impressed about this. (Let me know he wasn't full of himself LOL)

He agree's that I need a new neuro. He referred me to Dr. John O'Connell in Northampton, MA. He told me that once he receives word that I am his patient, he will contact him and give him the rundown on what's going on. He will also work closely with him to find a dx and TREAT THE SYMPTOMS! You have no idea how happy I was to hear those words.

I explained how I had been "dx'ed" by my current Neuro with psychosomatic symptoms due to anxiety and explained of course I have anxiety, I am watching my body fall apart around me and no one can help me. He did not agree with the dx however, did understand that I would be anxious. He feels current neuro's dx is wrong and I need treatment of symptoms until a proper dx can be found.

He also said he is questioning stroke. Although he is an MS specialist, and all of his training is specialized in this area, he questions the stroke theory. Which makes him also question those slides. He asked that once I find out what is going on with those slides to let him know, he is curious.

So, that was my appointment. I have to say, if I wasn't married, I would have to kidnap and marry this doctor. He is FABULOUS!!!! Very understanding, listens attentively, very thorough and helps point you in the direction to FIND THE ANSWER!

So, I'm not a step behind, not completely a step forward, but he pointed me in the direction I need to go, and that's good enough for me right now.

[HollyHuney]

Thanks so much for the thoughts. I will post here tomorrow what happens and what he says :D

[Lulu54]

Holly, be sure to put your questions about the particular pics on your list so you remember to ask the expert.  

As you write your list, put the most important questions at the top - you may not make it through your entire list and you want to at least get the big ones answered.

I'll keep good thoughts for you to sleep tonight and be calm tomorrow.
Lulu

[HollyHuney]

Thanks a bunch for the comments. I am feeling very anxious and nervous about going to Boston tomorrow. I need to sit down and write out my questions. I don't know if I am going to be able to sleep tonight, just too anxious.

Holly

[Lulu54]

Hi Holly, I looked at your pics and think I see things, but I'm no expert.  

Did you catch the post earlier this week from Pat - about the MRI Lesion Atlas?  here is the address, perhaps something there will be of help to you or at least keep you preoccupied until Thursday! LOL


www.scribd.com/doc/8817608/MRI-Atlas-of-MS-Lesions

A great find from PatH - lots of images of MS lesions along with thorough explanations of what you are seeing in eachMRI photo.

keep us posted,
Lu

[jensequitur]

EXPO APP SERIES 500 IMAGE 11:  I think what you're looking at is a simple fold of the brain.  When you see shapes like that - curves and lines, rather than round circles, it's probably just the anatomy of the brain.

However, the other images show a lesion in the brain (cortex?) - looks like the right side.

[Karen99]

Hi Holly.  I read your post and looked at your MRI's.  I don't know what that larger lesion is, but I am impressed with the type of images produced.  I would hope that your neurologist will discuss the MRI's and their significance without you having to prompt him.

In addition to letting him know your symptoms, ask him what the heck it is.  Good luck on Thursday.