First MRI report..

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Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 3/2/2007 9:04 AM (GMT -6)   
Hi all.  I'm so frustrated with my neuro I could scream.  First of all I've been waiting and waiting for my referral letter to Dr. L for over a month, I called my neuro this week to find out what is going on and she hasn't even dictated the notes from our last visit, which is the visit that she decided to send me to Dr. L.  UGH!  The nurse knew I was very upset with this lack of follow up from my Dr, so she suggested I call Dr. L's office myself and get the appt around hopefully by the time the appt comes, my Dr will have her crap together.  I really liked her because she listens, but I'm finding out she doesn't act on things right away.  Has anyone here switched to the 2nd opinion Dr after seeing him/her?  I may be doing this since I should only have to see him (if it is MS) once a year or so.  Granted it's an hour and 1/2 away, in comparison to 5 minutes away (current neuro), but if I like him, I may ask if I can switch to him.. We'll see..
 
Ok - well here's the reason for my post..  Since I am now taking control of this 2nd opinion thing, I had to get copies of my MRI films and reports and I'm waiting for the neuro's office to send me a copy of my file as well. BUT I picked up my MRI report and films today before work and I kind of wish I didn't read them and just kept the envelope sealed...
 
Here's what is concerning me on the report...
 
The study does show demonstrated several slightly less than 1 cm sized foci of abnormal hyperintense T2 signal scattered throughout deep white matter of both cerebral hemispheres including a few adjacent to the atria of lateral ventricles.
 
IMPRESSION: Several scattered foci of abnormal hyperintense T2 signal noted throughout brain a nonspecific finding.
 
I looked up foci and that means lesions, BUT the size is very concering to me.  All I have ever seen lesions measured by are mm, NOT cm.  I asked the radiologist tech and they looked at the films and said, yep that cm looks about right by the way they look on here.  Who knows if this tech knows what he is talking about, but it has me a little more concerned.  I did have the MRI with contrast as well and it did not show any active lesions which is very good (I think).  Has anyone else had lesions this large?
 
Thanks for your info!  I really appreciate it.
 
Oh yeah, one more question...  Has anyone here given blood?  I have talked to one person telling me that I should not be giving blood if MS is a probability since it is a form of AIDS.  I did give blood in December and it totally wiped me out for a week and when I think back a bunch of my symptoms / sensory issues were so bad that I knew I was going to be waking up one morning and be paralyzed on one side right after I gave blood.  Has anyone else had this happen or maybe I'm just an idiot and should have never donated blood with all the stuff going on.  I just didn't even think of the AIDS thing.


I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President

Post Edited (Denda) : 3/2/2007 8:09:11 AM (GMT-7)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/2/2007 10:00 AM (GMT -6)   
FIRST THING:
 
***MS is NOT a "form of AIDS". Your friend is flat wrong.  MS is a disease of the autoimmune system (as is AIDS) -- but there ***is no other connection between AIDS and MS.  AIDS can be transmitted through blood transfusions (and other ways). There is NO evidence that MS can be transmitted this way.
 
SECOND:  Giving blood.  There is a lot of controversy around this.  In general,some of the thinking goes like this: "We don't know what causes MS.  We don't think it has anything to do with blood, but we really don't know.  So why take a chance? Why give blood and then find out later that indeed there is some connection there, or that MS is caused by a virus which can be transmitted by contact with blood?" 
 
Having said that, though -- some blood centers will accept our blood, others won't.  Mine won't. Lots of people are real committed to donating blood. If you are, you should ask at your local blood center, and see what their response is.
 
THIRD:  Yes, "foci" does mean lesions.  Read your report again.. it says the "foci" are LESS than 1 cm in size. Large, but LESS than one cm in size.  Perhaps that will make you feel better?
 
Truth is, I have no idea how large..or small..my lesions are.  All my MRI says is "multiple foci, too many to count".  Size and number are not all that significant anyway -- it's location, and what impact they're having on your ability to function that matters.  Nothing's changed from the moment BEFORE you read your report to now, has it?   Lesions that are "not active" are a good thing, but that can change, too: lesions become "active" when you're having a flare, or exacerbation.  Let's hope that doesn't happen for you, for a long time!
 
FOURTH: Doctors. If your "second opinion" neuro is more responsive than your first, by all means, feel free to switch.  And talk to your family physician...is he willing to deal with your MS, with consultations with the neuro?  Many of us with MS don't see a neuro at all unless there is something dramatic that happens with our situation -- change in number or intensity of flares, or a medicine reaction, or..... 
 
Often, once a diagnosis is made, and treatment plan established, the neuro is happy to send the patient back to the primary care doctor, treatment plan in hand (or forwarded to the doctor), with the comment: "Yes, the patient has MS, here's what I recommend; if you have questions, contact me.."
 
It may even be that you don't need that second opinion, and your primary will take it from here. Mine monitors my blood (I'm on Betaseron and there is a slight risk of liver problems...none so far, in 12+ years...), asks about spasticity, renews my prescriptions for the Betaseron and Oxybutanin, asks about anything else related to my MS.. and for example, at my recent physical, talked specifically about my need to see a neuro with these comments:
 
"well, if everything is pretty much the same as last time, I don't see the need for you to undergo that expense and trouble to see one.  If something happens that's different, or you really WANT to, I can refer you, but if everything right now seems the same, I don't think it's necessary..."  My mother used to say something similar: "If it ain't broke, don't fix it!"
 
Your MRI sounds pretty clear that you have MS, though.  I'm sorry.
 
 
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 3/2/2007 10:18 AM (GMT -6)   
THANK YOU THANK YOU THANK YOU - Uppity!!!

This person has had MS for 30 years that told me this. She stated that our local Red Cross told her the AIDS comparison. Maybe she got it confused OR maybe I understood it wrong. I was feeling really bad about donating thinking I could have hurt someone and not know it. Eventhough I would think the Red Cross would inform me if they found anything..... I will definately ask the next time I try to donate and see what they say. I never even thought about disclosing something like MS, but I guess that makes sense how you explained it above. I really appreicate that.

Yes, I know it does say LESS, my neuro never read the full report to me, I'm just having an emotional reaction I guess. It's easier to say my dr said, than reading the actual report for yourself.

I remembered that you go to your family dr. I'll definately keep that in mind.

Thanks for your explainations. I can read and read on this stuff, but I always come back here to get the answers! Thanks again.
I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/2/2007 12:30 PM (GMT -6)   
I think anyone who donates blood should disclose EVERYTHING that's wrong with them, and every med they're on. And I've not met many Red Cross *volunteers* who really understand all that they're asked, and so have "canned", or made-up answers. They know how to direct traffic through the blood donor lines, they're great at handing out cookies and juice, some of them actually know how to take blood...but they don't have medical degrees, don't understand all the implications of giving or not giving blood.

But indeed ask. As I said, some centers will accept blood from someone with MS, others won't.

I have found an MS research hospital that is willing to accept my body ...when I'm done with it, that is.. :)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 3/2/2007 1:59 PM (GMT -6)   
Hi Denda,
I am new to forums but wanted you to know that I can empathize with both your panic and impatience. Uppity is right though by saying nothing has changed now that you read it - except for maybe now you have more definitive questions you can ask. I am a little confused about the whole doctor thing too. I have seen my neuro doc once and will see him again next week. I'm not sure if I'll continue my care from him or if he'll send me back to my GP; which if that is the case I'm getting a new GP because my GP tried to tell me that my symptoms were from anxiety and wanted to put me on adavan. but that's another story. Anyways, that whole AIDS comparison thing probably really threw you too. I certainly didn't like reading that, I'm glad Uppity clarified. Take care!!

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/2/2007 8:13 PM (GMT -6)   
Hey Denda

Boy, what a find. I'm sorry, i know it's disheartening to see something so unexpected and scary. Uppity did a great job explaining all u asked about and i'm glad to see it brought u some relief. All i could add is that i had/have a second opinion doc too. He's about 100 miles from me...2 hours drive...and well worth my trip! I see him as needed now and continue to see my first neuro who is local to me. If something came up that was urgent and i needed to see a neuro right away i'd see my local doc, but if it could wait and i could see the second i'd see him instead. I trust him and like him...and that's what makes it worth it to me. Not that my local doc isn't good...he is...but two heads are always better than one when we're talking about our health! Take care and try not to think about the report so much for now...i know that's an impossible request for me to make! Hang in there and get that new appt and let us know how it goes. I'm curious to see what the new doc will say about the mri report.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 3/4/2007 2:07 PM (GMT -6)   
Thanks Rhonda & Angielov -

I hope I like the 2nd opinion doc, if not, I'll then go back to my pcp and talk to him if this is MS. I really enjoyed talking with the lady that has had MS for 30 years, she was alot of fun and just shared experiences with me. She's still walking on her own, but needs some help to steady her either by a friend or cane. It's great to talk to everyone here, but it does help to actually see and talk to someone in person about what they go through on a daily basis. I more than likely got the AIDS thing mixed up and misunderstood, but that was an eye opener. I did notice that she carries a small notebook with her at all times and jots things down while we are talking just to help her remember things. I'm pretty sure I'm going to have to start doing that, but that's not a big deal, I think I can handle that. :o)

I rec'd my notes from my neuro yesterday and nothing was surprising to read except that she does state that upon my initial examination she notices nystagmus in my blind eye. That was new, I didn't notice anything going on with that eye, but about once or twice a week having alot of twitching around the eye, but of course I couldn't see if it was the actual eye as well. Started having the same in my good eye about 2 1/2 mos ago, that one I knew I saw things jump and then come and go out of focus. She called that oscillopsia, which upon reading up on it on webmd, comes from nystagmus.

Does anyone else have nystagmus? I really hope it doesn't get much worse as the disease progresses. With having only one good eye when it's jumping I can't do anything, but close my eyes and hope it goes away soon so I can see again.

The other thing I found was my eeg report where my neuro thought I was having very minor seizures. The report reads ... At times, 10 hertz posterior alpha activity can be seen... I googled this and found an article on the 10 hertz posterior alpha activity and a direct correlation to MS. I can only assume that these might be my tremors. Interesting....
 
The only other labs that were not normal were a very low (abnormal) alkaline phosphatase and wbc count.  I'm looking those up now..

Well, this has been interesting to look everything up and know that I'm not nuts! :o) Hopefully my 2nd opinion doc will put all the pieces together as well. See yas!


I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President

Post Edited (Denda) : 3/4/2007 1:37:19 PM (GMT-7)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/4/2007 2:36 PM (GMT -6)   
Hey Denda!

Well i'm glad u got to look at the notes and see just what the doc has seen and gain some understanding. I too hope the second opinion doc will give u more insight and maybe be able to finish this up for u. Don't get frustrated if he can't and u find u'rself in the same position as u are now...just know that either way, they're bound to see the final picture in time and u'll get u'r answers. Sounds like there's a lot to work with and hopefully those answers will come very soon. Thanks for letting us know what u found and please let us know what the docs say. Take good care!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*

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