It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 01-07-2013, 12:13 PM   #1
Member
(female)
 
Join Date: Nov 2012
Posts: 58
Cira HB User
Update: MRI Findings

Well, I still have not heard from my neuro. Impatience won out & I did something I swore I wasn't going to do until I talked to my neuro. I went to the hospital & got copies of all of my results. Bad idea? Maybe. But it's done & this is what I found out:

All bloodwork was normal. I don't think I could'be been more middle-of-the-road normal if I'd tried.

My MRI is more interesting. Ventricles were normal. Cerebellum normal (no Chiari malformation). Brainstem normal. No vascular lesions, no pituitary enlargment, no hemorrhage. No enhancing lesions (possibly expected since my "flair" was over about 2 weeks prior? Not sure if I understand that part correctly...). As for the cerebrum, this is what the radiologist wrote:

"The right corpus callosum posteriorly demonstrates focal demyelination in a striped pattern. Early demyelination disease such as multiple sclerosis should be considered. No rounded or ovoid demyelinating lesions in the deep cerebral white matter."

The conclusions refer back to the what I posted above.

I know that I still don't know much until I hear from the neuro, but I had to share this, especially since my trust in my neuro is fragile. I have a lot of mixed emotions right now, but I don't actually regret getting the report. At least I have an idea of what I'm facing, which is less than I knew before! Now, I just have to wait impatiently for my neuro's call... Thoughts welcome, but please know that I am not asking anyone to diagnose me or tell me whether or not I have MS. I know you can't - I just needed to share this somewhere, with people who actually "get it."

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-07-2013, 12:27 PM   #2
Inactive
(female)
 
Join Date: Sep 2012
Location: Tennessee
Posts: 292
Whimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB User
Re: Update: MRI Findings

Sounds like you might be on your way to a diagnosis but of course, I cannot say for sure as I am also in the diagnostic stage. Hang in there with us!

 
Reply With Quote
Old 01-07-2013, 01:05 PM   #3
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Update: MRI Findings

I would not put much faith in a radiologist unless they had some MS experience nor a general neurologist. If you indeed had an attack which was neurological and it had already ended by the time you had your MRI, then it would not be "active" and would; therefore, not be enhanced or "lit up" by the enhancing dye. Also the report does not give a count of lesions.

Keep your copy with you and do not be afraid to ask for a second opinion, it is your right. The fact that you have your MRI and your blood work is clear and normal would place you close towards the exit from limbo land.

You might need to continue to be a squeaky wheel. Do not fear this because sometimes it is necessary to et the neuro off the fence. With the Revised McDonald Criteria in hand, do not fear asking- Now What?
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 01-08-2013, 04:17 AM   #4
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,704
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Update: MRI Findings

Ive got to say if your doctor was going JUST by the radiologists report- youre not getting a MS dx. It doesnt matter if it suggests "The right corpus callosum posteriorly demonstrates focal demyelination in a striped pattern. Early demyelination disease such as multiple sclerosis should be considered". The fact that it says "No rounded or ovoid demyelinating lesions in the deep cerebral white matter" is enough to rule out MS for now.....simply because you need the lesions to get a dx.

As for the part where you wrote that there were no enhancing lesions- that means that nothing "lit up" or "glowed" under contrast. That means that nothing is going on NOW which is causing any symptoms. Youre not in an attack at the moment. If the symptoms were only two weeks ago, chances are very good that they would still enhance.

HOWEVER, this doesnt mean you dont have MS. Its going to be up to your doctor to decide what to do, but my gues is he will keep a close eye on you and retest (RE MRI) you in six months to see what changes appear..unless you have serious symptoms sooner. There isnt enough evidence here to say you have MS, but there isnt enough evidence to rule it out completely either.

Now, just FYI, a good Neuro will NOT even look at the radiologists report...he will read it himself and make a decision. Its quite possible that the radiologist missed something, that there is a lesion right smack in the middle of the thing that he isnt seeing...that being said, the entire report would be wrong and you surely could have MS......so its still important that you get this read by your doctor and you may even want to consider a second opinion on the reading of the MRI if you dont like what he has to say (or he doesnt actually read the films himself).

Please let us know what happens....my thoughts are with you.
Nikki
__________________
RRMS- dx 05

 
Reply With Quote
Old 01-09-2013, 06:26 AM   #5
Member
(female)
 
Join Date: Nov 2012
Posts: 58
Cira HB User
Re: Update: MRI Findings

I finally got to talk to my neuro yesterday. Just when I was frustrated to the point of finding someone else, he restored my faith in him a little. We actually had a really good little chat.

He actually never got my MRI from the hospital - just the blood work. He is located about 75 miles away, so they had to send the CD of the images via snail mail & they never did that. Can't say I'm surprised - our hospital is not exactly known for their organizational skills. So, his nurse got to work getting the hospital to send everything over. I was expecting to hear from him maybe Friday, after he got the actual images, but he called me back as soon as he read the radiologist's report. He said that he didn't want to make any judgements or say too much until he actually sees the images himself, but that based on the "abnormalities" (I think that was how he put it) that the radiologist saw, he thinks that we need to look a little deeper, so he is ordering a c-spine MRI. He said that unless he sees something that the radiologist didn't, there isn't enough there to make any conclusions - we can't rule it out, but can't rule it in, either. But the report was enough to suggest that we need to keep looking. He'll be calling me later this week once he actually reads to images to tell me what he saw.

He apologized profusely for making me wait the way he did. He acknowledged how worried I must have been & said that there was no excuse & that owed me an apology. He was very sincere & humble, which eased my irritation a little bit. We had a good conversation about it & he told me that once I get the c-spine done, he'll call me the minute he gets the results. He also apologized for not doing the c-spine in the first place. He said he thought he ordered it (I obviously remember differently, but hey - I'm the person who momentarily forgot her best friend's name yesterday, so what do I know?!) Lesson learned for me, I guess - next time, question it!

All in all, I think we're heading in the right direction.

 
Reply With Quote
Old 01-09-2013, 10:01 AM   #6
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Update: MRI Findings

What a great update and also a great lesson for others who are starting down the road for a diagnosis. It is sad that we cannot depend on records to be properly transferred. Sadder yet is who has your information and what will happen to it?

If at all possible always get a hard copy or a digital copy of your information which can be hand carried. I have mine digitized and in case I am incapacitated, my medical bracelet provides the information to access it.

Thanks again for sharing your story and experiences. I hope you have even better news to share with us soon!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 01-09-2013, 04:28 PM   #7
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,704
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Update: MRI Findings

Cira,
Thats really good news that your faith is restored and you were treated with the dignity that you deserve. I did have to laugh though....what he told you, is exactly what I told you to expect him to say. Im glad to hear he wants to see things for himself and not take the radiologists report though.

The Cspine IS important. Ive never heard of a doctor not ordering both together during the dx phase, but at least youll be getting it and thats what matters.

Keep us posted!
Nikki
__________________
RRMS- dx 05

 
Reply With Quote
Old 01-09-2013, 08:20 PM   #8
Member
(female)
 
Join Date: Nov 2012
Posts: 58
Cira HB User
Re: Update: MRI Findings

Nikki- The whole time he was talking, I was thinking that it was exactly what you told me he would say. I was also relieved to hear that he was looking at them himself & that he felt he needed to do the c-spine without me having to ask. After our talk, I feel much better & more confident in his MS experience (even though he doesn't specialize in MS). At least he fully acknowledged his slip-up in not ordering the cervical in the first place.

I have the MRI tomorrow morning, so even though he will once again have to wait for actual images, hopefully we will have some preliminary answers soon.

 
Reply With Quote
Old 01-10-2013, 03:52 AM   #9
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,704
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Update: MRI Findings

Cira,
Good luck this morning! Im sure you wont have to wait too long to get a call back. I am happy that YOU are happy about this guy.

Listen, I have a MS Specialist and hes not a nice person. Brilliant, yes- but if it wasnt for his Physicians Assistant, Id never step foot back in his office. For my day to day MS management, including my drugs and MRIs, I use a regular Neuro. It just so happens mine has a Fellowship in MS and his entire practice is about 85% MS related...but he is NOT a MS specilaist. Dont care. Hes warm and caring and hands on- hes in my insurance network and he is about 5 miles from my house. What more can I ask? You CAN find regular Neuros who have a special interest in MS, who are just as qualified.....of course my regular guy sent me to the MS Specialist before he would give me a 100% dx; but at that point, HE knew and I knew that I was going to hear what he already had told me....and I did. To date, my MS specialist has NEVER told me anything that the regular Neuro didnt already say....and it was the regular Neuro who picked up on some very important things, such as when I started developing antibodies to my drugs, AND when I went into liver failure from those antibodies.

Point is, if you decide you really like this guy- keep him! You can always get a second opinion if at any point you dont agree......but I have to admit, he sounds like he redeemed himself very well. I spend my life with doctors professionally, they are just regular people. They make mistakes- they also forget to return calls- and they even use the bathroom just like us! (wink). But seriously, if he did what you didnt expect- apologized, jumped on your case- and tried to salvage your relationship with him- he might actually be the best bet for you because you will always stand out in his mind as a VIP patient...and he'll probably take good care of you. Your decision, but I would definately be thnking that he should get a second chance if it were me.

Youre very strong Cira- you remind me of me when you post- youre going to get thru this just fine. Keep up the good attitude and let us know what the Cspine shows...
Ill be thinking of you.
Nikki
__________________
RRMS- dx 05

 
Reply With Quote
Old 01-10-2013, 08:48 AM   #10
Member
(female)
 
Join Date: Nov 2012
Posts: 58
Cira HB User
Re: Update: MRI Findings

Thanks, Nikki. I needed that. It's really hard to reconcile all of this in my mind sometimes, you know? The MRI tech today was so kind (at first, he was under the impression that I already had an MS dx) but as much as I appreciated his kindness, part of me wanted to retreat from it a little bit. I am not used to that extra attention or used to being treated like I'm sick. This is all going to take some getting used to.

You are very right about doctors being regular people. I have also dealt with them extensively on various levels, and I know that they make mistakes, have doubts, second-guess themselves, forget things and seek second opinions. No one is perfect. He absolutely did redeem himself very well, in a way that I didn't really expect, and I respect him for that. My husband & I both liked him from the start at my appt & felt at ease with him, which is HUGE. My husband hates doctors and has NO tolerence for the inner workings of the medical profession, so for him to actually like a doctor & not just tolerate one is a miracle! I'm definitely sticking with him, at least for now. If I need a second opinion, I'll seek that out, but for now, I'm going to see where I get with him.

 
Reply With Quote
Old 01-11-2013, 09:15 AM   #11
Member
(female)
 
Join Date: Nov 2012
Posts: 58
Cira HB User
Re: Update: MRI Findings

Got my copy of the c-spine MRI. Nothing is official, because I'm waiting for my dr to call me with a plan of action. But, the report says I have "multiple" lesions from C3-T2 involving both sides of the spinal cord. I also have a 5mm enhancing lesion at C4 level of the dorsal spinal cord.

Obviously I'll know more when I speak with my dr, but.... I think we can all guess where this is headed.... Not sure what else to say right now...I'm actually speechless, which doesn't happen often.

 
Reply With Quote
Old 01-11-2013, 09:39 AM   #12
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Update: MRI Findings

Rather than grieving where this is heading, I think you should give yourself a party and indulge in some self-pampering for having the fortitude to keep pushing forward and for having your insight verified. Whatever you diagnosis, you have done the right thing.

if your lesions extend to T2 you might need to include the MRI from your head through your complete T-spine. All of my MRIs are now from head through T-Spine after they found lesions on my T-Spine.

Thank you for your update. I am still keeping you in my prayers.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 01-11-2013, 09:53 AM   #13
Member
(female)
 
Join Date: Nov 2012
Posts: 58
Cira HB User
Re: Update: MRI Findings

As usual, you give great advice. I am glad that I pushed onward, as I knew I needed to. This is not the result I wanted, but it was what I expected & I just wanted an answer... Looks like I'll be getting one. I do think some self-pampering is in order. I won't lie, I wasted a few tears when I read that report. Then, the tears just made me mad & I steeled my spine & headed to my class. I'll get through this. Rumor has it, a "new normal" awaits me....

 
Reply With Quote
The following user gives a hug of support to Cira:
Whimpurr (01-11-2013)
Old 01-11-2013, 10:08 AM   #14
Inactive
(female)
 
Join Date: Sep 2012
Location: Tennessee
Posts: 292
Whimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB User
Re: Update: MRI Findings

It sounds like you will soon be leaving limboland and although it isn't in the direction you had hoped, I am relieved for you that you at least will have answers! Hope I soon will follow with some answers as well! (((HUGS)))

 
Reply With Quote
Old 01-11-2013, 10:42 AM   #15
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Update: MRI Findings

A "new normal" awaits you indeed. Remember, your new normal is defined by you. I hope you enjoy your self-pampering!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (994), MSNik (522), Snoopy61 (58), Whimpurr (13), J-one (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), Gullyabb (8)

Site Wide Totals

teteri66 (1164), MSJayhawk (999), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (667), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 02:14 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!