Need advice, encouragement, help...

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JOD
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/9/2007 11:28 AM (GMT -6)   
So this is the story so far...
 
I'm a 29 year old female, healthy, active and fit.  I've had Type 1 Diabetes for about 13 years.  I've struggled with it, delt with it (long and complicated story), and am currently doing well with it on an insulin pump (the new and more advanced way to adminster insulin 24/7).  I'm also an xray tech working in a hospital/outpatient imaging center and they just got a new MRI machine installed.  So they needed guinny pigs to get the thing up and running and things squared away so they can begin doing patients.  So I volunteered and we decided to scan my brain.  It showed a lesion.  The radiologists took a look at it (out of kindness since it's not an official MRI with dr.s order) and with a worried look on their faces, suggested that I go see my Dr. and get an official MRI with Gad.  So what they've said and I've come to find out is it looks a lot like a lesion suggesting possible MS (not an official reading, just this MRI and nothing else so far.  This all happened only last Friday).  I've had no symptoms at all whatsoever.  Looks like we've just come across this totally by chance.  I saw my Dr. yesterday and she's going to refer my to a neurologist.  Of corse I've done some research on my own and things aren't looking good.  Since I allready have an autoimmune disease I grouped them together and did some searching.  I've found out that phisiologically (sp?) they are very similar and that often thay can go together.  Like I'm 2-5 times more likely to get MS than the general non-diabetic population. 
 
I'm not diagnosing myself, since I know that I'll have to endure more extensive testing, but I'm totally freaked out and wondering what you all might think.  I'm tired and worn out of medical things.  I broke my C1 last year (mountain biking) and wore a halo for 4.5 months with a total recovery time of more then 6 months.  I just got married and am ready to get on with my life.  I'd like to have kids and a normal life, but this just sucks if I'll have to deal with another huge medical blow.  I'm not sure what to think, feel, do.  Any advice would be great.
 
Julee

Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 1/9/2007 12:02 PM (GMT -6)   
Tuesday noon
 
Very good afternoon, Julie:
 
...I think many (if not all) of us MS'ers have had similar feelings when diagnosed.
 
Prime of our lives....job and career just getting going....maybe just married and thinking about children...and....BANG!!!!
 
MS...but the first thing I'd do, is call your state MS society and ask for a referal to a MS specialist neuro....
 
For me, it was 19 years ago, and I used to run 10-15 miles a week, ride my bike regurally, skip rope....all in the past...
 
Sounds like you were on that edge of exercise+.....
 
Great luck....John

JOD
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/9/2007 12:25 PM (GMT -6)   

So the only thing I really saw in your reply was "all in the past."  I guess I don't really want you to say, but this means that you don't/can't do any of that anymore?

Can you give me the info on the state MS society?  California.  I guess I can just as well google it.  And what do you mean by getting a referal from them for a neuro specialist?  I believe I have to go throgh my Dr. with my insurance plan for that.  Maybe if I don't like the neuro person she's reffering me to, I can see about someone else.  I'll have  to stick with my plan Dr.'s for now anyway.

Thanks.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/9/2007 2:31 PM (GMT -6)   
JOD said...
So this is the story so far...
 
I'm a 29 year old female, healthy, active and fit.  I've had Type 1 Diabetes for about 13 years.  I've struggled with it, delt with it (long and complicated story), and am currently doing well with it on an insulin pump (the new and more advanced way to adminster insulin 24/7).  I'm also an xray tech working in a hospital/outpatient imaging center and they just got a new MRI machine installed.  So they needed guinny pigs to get the thing up and running and things squared away so they can begin doing patients.  So I volunteered and we decided to scan my brain.  It showed a lesion.  The radiologists took a look at it (out of kindness since it's not an official MRI with dr.s order) and with a worried look on their faces, suggested that I go see my Dr. and get an official MRI with Gad.  So what they've said and I've come to find out is it looks a lot like a lesion suggesting possible MS (not an official reading, just this MRI and nothing else so far.  This all happened only last Friday).  I've had no symptoms at all whatsoever.  Looks like we've just come across this totally by chance.  I saw my Dr. yesterday and she's going to refer my to a neurologist.  Of corse I've done some research on my own and things aren't looking good.  Since I allready have an autoimmune disease I grouped them together and did some searching.  I've found out that phisiologically (sp?) they are very similar and that often thay can go together.  Like I'm 2-5 times more likely to get MS than the general non-diabetic population. 
 
I'm not diagnosing myself, since I know that I'll have to endure more extensive testing, but I'm totally freaked out and wondering what you all might think.  I'm tired and worn out of medical things.  I broke my C1 last year (mountain biking) and wore a halo for 4.5 months with a total recovery time of more then 6 months.  I just got married and am ready to get on with my life.  I'd like to have kids and a normal life, but this just sucks if I'll have to deal with another huge medical blow.  I'm not sure what to think, feel, do.  Any advice would be great.
 
Julee
First of all, take a DEEP breathe.  You're a LONG way away from any sort of diagnosis of MS. 
 
Was it a *radiologist* who looked at your MRI, or a technician?  You need to know that two (or more) highly trained people, looking at any one MRI, can (and often do) come up with different theories about what they're seeing there, sometimes.
 
If you've had NO symptoms at all whatsoever -- the spot on the MRI COULD be a lesion indicating MS. Or it could simply be "a spot" -- there's even a name for that -- UBO -- unidentified bright object.
 
Also -- LOTS of things can cause spots on an MRI -- including migraine headaches, brain injuries (you broke your C1 mountain biking...did you by chance also hit your head, somewhere in the crash?  Those kinds of injuries can cause "spots" on an MRI), past infections -- a whole host of things.  And folks have gone through their whole lives with "spots" appearing on an MRI and they didn't know they were there, until..like you..had an MRI for some unrelated reason, and there they were. But they never caused any problems, didn't lead to any disability. Simply were there.
 
I wouldn't at this stage worry about finding an MS specialist. Just go to your regular neurologist as referred by your doctor, and go from there. Wait for his interpretation, and then decide what to do next.  With any luck -- after he's taken your medical history (already have an autoimmune disease; the injury, etc.) -- he'll decide it's nothing to be concerned about, and send you on your way.
 
Let us know what happens after that visit, OK?

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


JOD
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/9/2007 3:46 PM (GMT -6)   

Thankyou, u-cats, for your response.  I really appreciate it.  It's what I need to hear to calm me down a bit.  I'm certinaly not hysterical or anything, but worried about the possible upcoming tests, etc.  I'm tired of Dr. visits, copays, results, xrays, drugs, diabetic stuff...etc.  It was a *radiologist* who told me to go see my Dr.  Several of them, actually since I work in radiology.  But maybe their concern also had to do with that they work with me and know me personally, and just saw me go through the C1 break and recovery.  I did land on my head to cause the C1 break, with a helmet of corse.  If no helmet, I would have probably died.  I know there could be other things that would cause this lesion, so I'm trying to think positive and not flip out.  It's just a bummer about the "long way off to any sort of diagnosis."  I believe your right, which sucks.  More this and that, and more waiting...

Anyway, thanks for your thoughts.

Julee  


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/9/2007 4:26 PM (GMT -6)   
Hey Julee

Welcome to the board! I see Uppitycats and Motown John have already addressed u'r questions and quite well. As Uppitycats said, try to relax and wait to see the doc. Lesions/spots can be from sooo many things, but just the knowledge that they're there can scare u to death. Don't feel alone...anyone would be doing just what u'r doing. I'm glad u took it upon u'rself to study and be proactive in u'r care, but at this point the very best thing u can do is to let the doc check u out and continue on with u'r life, daily activities, as normal. To address one very important part of u'r concerns with ms....IF u did in fact find out u have ms...many, MANY people have ms and have very active and functional lives. Things are much better now than some years back in regards to ms treatment. There are meds available that can help. Just keep that in the back of u'r mind and know that ms isn't a disease that automatically takes u'r normal and active life from u. Relax and do as i was told in the beginning...breath. ;) Please let us know how u'r appt goes. I'm so glad u found this forum and hope u'll feel comfortable and will ask any questions u have. We're all more than willing to answer and help where we can. To add, we have a live chat on Mondays at 6pm (cst) each week. It's a great chance for u to get to ask questions to all participants at once as well as voice u'r concerns or opinions. Hope to see u there!

rhonda

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/9/2007 4:50 PM (GMT -6)   

When I said: "You're a LONG way from any sort of diagnosis of MS"...what I MEANT was this:

You say you've had no symptoms, no suspicion of having MS or anything like it.  You weren't, for example, experiencing "strange symptoms with no cause" that led you to a doctor.  You had an MRI simply because you were trying out some new equipment.  You don't have any numbness or tingling or weakness in your limbs (that's not explained by your recent accident and recovery), or bowel or bladder problems, or problems with balance or any of the usual MS-like symptoms.

The ONLY thing you have is this lesion showing up on an MRI, an MRI you had quite "by accident".  So it seems unlikely that indeed you have MS.   Sure, your neuro will want to examine the MRI, and maybe do the followup with the gad.  Or maybe not.  If I were a betting person, I'd bet "not". I'd bet that he'd take a thorough medical history, ask about your accident, maybe request medical reports from that, and then decide that...at least right now...there's nothing more to worry about.

Does this mean you'll NEVER have MS?  No. As I said to someone else here, just the other day, that's like saying, "I've crossed this road a thousand times and never gotten hit by a car. Therefore, I'll NEVER be hit by a car."   You COULD..somewhere down the road...develop MS.  And then look back at this one mysterious lesion and say, "..well, uppity, you were WRONG!!"

Or you could simply go about your life, thankful that you recovered from your horrific mountainbike accident, deal with your diabetes, and have those babies and all that. I sincerely hope this latter is true.

But...if indeed the worst case scenario is true, and you DO have MS...as Rhonda already indicated, many many folks have MS, go on to have babies, careers, live long and relatively OK lives, even with MS.  And even us oldsters who were diagnosed years and years ago before the benefits of the modern medicines (24 years ago for me) are alive and well and rocking along. So will you. Assuming you take care riding that mountain bike..  :)

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


JOD
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/12/2007 10:11 AM (GMT -6)   
I went to my first neruo appt yesterday.  I showed him my "unofficial" MRI with the lesion or spot.  He ordered an MRI with contrast/gad and another test that I believe tests my neuro response, but I've never heard of it before.  So once I get those tests, we'll go from there, or be done with it.  I guess if these two tests don't point to MS, I'll just have another MRI further down the road just to check and make sure nothing is changing.  I asked him a lot of questions trying to get a feel from him as to if I should be concerned.  He was very nice a reassuring, being professional and objective to the whole thing.  I realized how confused I feel about having the "unofficial" MRI in the first place, giving me reason, out of the blue, to possibily be concerned about something I would have never even known about, at least now.  I was just trying to help the MRI guys out.  Grrrr.  I'm really hoping that I can put this behind be soon.  I think I'll hold off telling my parents, so as not to get them involved in something that might be nothing. 
 
I really appreciate all your comments and thoughts.  I does help to have some communication with those who have personal experience with this stuff.
 
I'll keep you posted when I get the tests done.
 
Thanks.  Julee 

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/12/2007 10:27 AM (GMT -6)   
Hey Julee

GREAT!!!! Sounds like u'r doc is being thorough and careful. The test with contrast will give him more detail about the lesion and the other is prob a test to measure u'r response to stimuli...involuntary responses. I agree with u on not telling u'r parents at this time. It will likely only upset them and could end up needless. Yes, please do come let us know how those tests go and how u'r feeling. All this can be so overwhelming and sometimes u just don't know what to think, but we'll be here. Best wishes and prayers to u for u'r good results on the tests.
rhonda
Co-Moderator, MS Forum


Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 1/12/2007 11:12 AM (GMT -6)   
Hi Julee -
That is awesome that your Dr is going at this with full force. It's gets most of the questions out of the way. I hope it comes out fine for you. Good luck and keep us all posted.


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 1/12/2007 1:15 PM (GMT -6)   
JOD said...
I went to my first neruo appt yesterday.  I showed him my "unofficial" MRI with the lesion or spot.  He ordered an MRI with contrast/gad and another test that I believe tests my neuro response, but I've never heard of it before.  So once I get those tests, we'll go from there, or be done with it.  I guess if these two tests don't point to MS, I'll just have another MRI further down the road just to check and make sure nothing is changing.  I asked him a lot of questions trying to get a feel from him as to if I should be concerned.  He was very nice a reassuring, being professional and objective to the whole thing.  I realized how confused I feel about having the "unofficial" MRI in the first place, giving me reason, out of the blue, to possibily be concerned about something I would have never even known about, at least now.  I was just trying to help the MRI guys out.  Grrrr.  I'm really hoping that I can put this behind be soon.  I think I'll hold off telling my parents, so as not to get them involved in something that might be nothing. 
 
I really appreciate all your comments and thoughts.  I does help to have some communication with those who have personal experience with this stuff.
 
I'll keep you posted when I get the tests done.
 
Thanks.  Julee 
Would the other test be "evoked potentials"?  Those do measure the brain waves from brain to extremities, and could point to some problems, if they exist.  Seems like your doctor is being careful and thorough.  Do let us know when you find out the results.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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