When to get MRI

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centralnjgal
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Date Joined Mar 2007
Total Posts : 71
   Posted 3/13/2007 5:09 AM (GMT -6)   
How long do you have to wait after symtoms start to get a brain mri? Mine was negative, but I only waited a month after symptoms..
 
thanks,
 
Eleanor

Denda
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Date Joined Jun 2006
Total Posts : 329
   Posted 3/13/2007 7:00 AM (GMT -6)   

Hi Eleanor -

I'm sure much more MS educated people will be coming along and giving you some great advice, but I thought I would jump in here too.

http://www.nationalmssociety.org/Diagnosis.asp 

The website above is a basic understanding of what is needed to dx MS.  There also is a TON of information on the Interent if you google multiple sclerosis.  Some sites actually break down how to get dx'd with different types of symptoms backed up with the proper test results.  I am not dx'd as of yet either, although my MRI came back with several large lesions.  I had been having tremors and numbness for about 2 - 3 years and started progressively getting worse, so I went to see my pcp in October 2006.  My pcp referred me to a neuro and she started the journey of tests, mri, eeg, blood work.  Since I already had an MRI in November, I will not get a follow up MRI until first week in April (6 mos).  This is only to see if more lesions have formed or if any of the lesions show up active on this MRI since they were not active on the last MRI.  I think a follow up MRI is something that is done IF the first MRI was abnormal AND you are showing symptoms that everything else but MS has been ruled out.  Possibly if your symptoms get really bad, your doctor may ask for another MRI in a couple months and not wait the full 6 months, but that will be under his discretion and have to have something solid to back up the MRI for insurance reasons.

This is just my 2 cents worth.  Hope it helps some.  Please keep everyone posted on how you are doing.

 

 


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


Kimber
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   Posted 3/13/2007 3:55 PM (GMT -6)   
Hi Eleanor,
 
   There really isnt a set answer to your question as MS progresses differently for everybody.  For some lesions might show in a matter of months after symptoms and others it takes years.  If MS hasnt been ruled out for you, they might want to redo the scan in six months or so.  That too is just an estimate depending on the doctor treating you and how your symptoms are progressing.  By that I mean how often you are getting relapses, new symptoms or worsening of old symptoms.  Many people here keep a journal of what happens when.  Keep us updated on how you are doing.
 
   This is a pretty good site which explains the diagnostic criteria and testing you might go through.        
 
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centralnjgal
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Date Joined Mar 2007
Total Posts : 71
   Posted 3/13/2007 5:58 PM (GMT -6)   
Dender,
I am very grateful for your response...Why wouldn't they think you have MS at this point if you show lesions?
Is your numbness in your foot and arm like myself? Also, are the tremors you have related to the outside temperature or are you talking about shaking for no apparent reason. I'm sure you can attest to the fact that the symptoms are scary...

Thanks,
Eleanor

centralnjgal
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 3/13/2007 5:59 PM (GMT -6)   
Kimber,
Thanks for sharing the info on mri's.. I think I went too soon to have one.. I don't think going after only having symptoms for a month is enough time to detect lesions. If you never get lesions, can a doctor diagnose ms by symptoms alone?

Eleanor

uppitycats
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   Posted 3/13/2007 6:52 PM (GMT -6)   
centralnjgal said...
Kimber,
Thanks for sharing the info on mri's.. I think I went too soon to have one.. I don't think going after only having symptoms for a month is enough time to detect lesions. If you never get lesions, can a doctor diagnose ms by symptoms alone?

Eleanor
An MRI is not the sole test to determine whether someone has MS.  There is no one single test that determines that, but rather a cumulation of test results, ruling in some things, ruling out a host of other disorders, many of which look like MS...share symptoms with MS.   Lesions don't always appear on early MRI's, but often a doctor will then do a spinal tap to see if there are o-bands in the spinal fluid, or the patient will exhibit enough clinical signs -- signs that can be seen, tested for, demonstrated, found, in a neuro examination, and be repeated over time (things like problems with balance, with vision, with bladder and/or bowel, with gait, strength in limbs, that sort of thing....not sensory stuff like numbness or tingling.) 
 
While some doctors seem to rely on finding lesions on an MRI, others will only use that as one of many tools in their "diagnostic tool chest", and decide that there are enough clinical signs, and a positive spinal tap, to make their diagnosis.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 3/13/2007 7:16 PM (GMT -6)   
Hi Eleanor,
 
    Majority of doctors will not give a definite diagnosis without lesions, however as Uppity explained there isn't one single test for MS.  Evoked potentials and lumbar puncture can also be performed and those results can be used to aid in the diagnosis along with the MRI and neurological exams performed over time.  Also all other possible causes to the symptoms need to be ruled out as well. 
 
    In the MS resources thread there is an excellent website found by Uppity which go through the what else might it be question if you are interested. 
 
Kimber
 
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centralnjgal
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 3/13/2007 7:22 PM (GMT -6)   
Thanks, Kimber.
I am asking alot of questions because I am fairly new to these symptoms and pretty frightened. This message board is a godsend...

Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 3/13/2007 7:44 PM (GMT -6)   
Eleanor,
 
    Not a problem at all, we're here to help.  I'm sorry you're going through all this in the first place but try to hang in there.  Did your doctor say what the next step might be since your MRI was negative?
 
 
 
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rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 3/13/2007 7:54 PM (GMT -6)   
Hey Centralnjgal

Sorry to be jumping in here so late, but just missed getting to say hello to u and wanted to let u know i'm glad u'r here and hope u'll be getting some answers soon. Hang in there...this can be lengthy and exhausting at times, but u'r in a great place for support and info...so keep asking questions and we'll help u thru all this.

As a way of trying to answer u'r question...i had symptoms for about a month and a half or two months when i had my first mri and mine were all clear. I recently had a repeat set of mri's done and tho i thought something appeared to be there, my report was clear! It's hard to know how to take that...good or bad....since u don't want anything to be there, but u do want to find SOME answers. Hang on and keep trodding on. I'm glad to have u here with us and hope to get to know u better in time to come.
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 3/14/2007 5:53 AM (GMT -6)   
Hi Eleanor -

I am going to see an MS specialist next month for a 2nd opinion by the advice of my neuro. My neuro has run the following tests on me as it stands, MRI - abnormal, EEG - slightly abnormal, LP - normal, blood work - normal.

My tremors described are shaking for no apparent reason, the most bothersome are the ones that are like caffeine jitters that I get most of the time now in both hands and arms. My head always feels like it's shaking, but on the outside it isn't, my lower jaw will start trembling like when someone is cold, but mine happens at any time. My legs will start at a slight tremor and then go more into a violent shaking for about a minute and then it's gone. However when I do get cold, I will start to shiver and even when I am warmed up, I still 'shiver' up to a 1/2 hour after being warm, I didn't relate this to MS though, just my body trying to get warm again, that I would think is normal.

As everyone here has said lesions on an MRI is not the DX getter, it's a part of the diagnosis process, but I have to have something else clinical to back it up... possibly if the MRI in April shows active lesions or new lesions, with the symptoms that I have? I don't know. This may sound horrible but I think MS is much easier to dx when someone has had the horrible experience of losing the use of their arm or leg for several days and then if an MRI shows lesions or the LP is positive it's a tad easier, but for those of us that luckily have not had that type experience, and we just have 'symptoms and sensory problems' it becomes a lot harder to dx. Even though I have the rt sided numbness on the arm and leg, I still can use them and have not been hospitalized for anything. I walk like I am drunk about 50% of the time and have other balance/dizzy issues as well, but my neuro still feels that she alone can not dx on what we have so far. Which is OK, since now I'm going to see a MS specialist and hopefully get a yay or nay. As far as I know, everything else has been ruled out, so it's just a waiting game.

Hang in there we're all here to help one another. This forum has been my godsend as well since I've started testing.
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


centralnjgal
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 3/14/2007 4:50 PM (GMT -6)   
Kember,
I am going to a Neurologist this Friday and can't get there quick enough.. The cognitive problems and weakness is pretty awful, especially since I just started a new job where I really have to learn alot and be analytical..
I'm hoping they'll suggest another MRI at a future date and/or a spinal tap...I'm sure the neurological exam will show him I have some real symptoms.

Thanks for your concern... I'll hang in there..

centralnjgal
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 3/14/2007 4:52 PM (GMT -6)   
Rhonda,
Thanks So much for getting back to me.. Can you PLEASE tell me what your symptoms are? Will you get a spinal tap since everything keeps coming back negative?

Eleanor

centralnjgal
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 3/14/2007 4:55 PM (GMT -6)   
Dender,
Thanks for telling me your story.. I am so sorry to hear about your tremors and all the horrible symptoms you're experiencing. By the way.. I don't think it's normal that we shiver when it's cold. I think it is related to MS.
I just don't understand how you could have an abnormal MRI, with all your symptoms, and still NOT be diagnosed.
That's ridiculous to me.. Does your doctor at least give you treatment as if you have MS and does it help at all?

Eleanor

rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 3/14/2007 8:02 PM (GMT -6)   
Hey Eleanor!

Sorry it's so late in my answering this post, but i needed to get to a time where i could sit and think for a bit about this. It's been such a winding road and add to that three little girls out on spring break...and u see why i have to get quiet time!

My symptoms have been pretty varied and all over the place. I started with numbness over my body in patches that began in my face and hands. I had a feeling of wetness in my hands and then i began being dizzy and having that drunken walk. From there on it's been one thing after another. I guess u could say i've had the 'classic' ms symptoms, but also the funky sensory stuff that u'll see talked about here but not listed on any official symptoms list. I don't really know where to begin on the sensory stuff...vibrating in my leg and sometimes in my arm. Most of my stuff has been right sided. Oftentimes i am dizzy and off balance...that's what i pretty much have all the time...the rest sorta comes and goes. Numbness at times still...tonight i was cooking and my right hand (my dominant hand) began to get numb in the part that was closest to the heat. Lately choking on anything and everything. Not so sure that's related to all this because as i understand ms related choking is more on liquids, tho i could be wrong. I guess i'm having a bit of a time recalling it all tonight, but suffice it to say it's varied and much!! Thankfully it comes and goes and i get lots of days that i'm just fine but for the silly dizziness and bal probs. Those aren't too problematic tho...i have learned how to place my feet and even toes to afford those bal probs.

No, i won't be getting a spinal tap unless my doc's feel it's helpful. At this time neither of them have suggested it and in fact the second opinion doc said it'd prob not reveal anything since the other tests have been neg. For now and until or unless anything else shows up, i'll be in limbo land. There's nothing else i or anyone else can do. Once u've exhausted u'r testing/diagnosing options that's all that's left. Don't get u'rself down if u don't get an answer soon. It can take a long time for some and in the meantime don't get single minded either. Keep u'rself open to anything it could be...so as not to miss any other possible real cause of u'r symptoms. I found myself doing this to an extent at one point and i had to bring myself back into focus. MS isn't the only thing that can cause our symptoms and it'd be such a loss of time to be too focused on one thing and miss the bigger picture. Hang in there and keep asking questions and getting info. Ask for and get copies of all u'r med records as well as any and all test results. They're u'rs and u may well need them in the future. I"m really glad u found this sie and i truely hope u'll find the help and support u deserve here.
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 3/15/2007 7:59 AM (GMT -6)   
Hi Eleanor -
I'm on nothing at the moment. My neuro put me on Topamax since she thought my tremors were more minor seizures (EEG showed 'shadows' at a specific frequency). Eventhough I thought the Topamax helped the tremors, now that I've been off it for the last month + , I'm realizing that it really didn't help that much, maybe cut down the frequency of them, but I could have just had some good days in there. A couple side effects of the Topamax are tingling and numbness. Well, when you are already having that in the background, the drug intensifies what is already there. Or at least on me, it did. So I started thinking... maybe my symptoms aren't that bad and it's just the Topamax. I took myself off it and I'm back to the way I was before Topamax, same symptoms just not on "biggie size" mode. I may be nuts, but the way it was going, I think if I would have stayed on the Topamax much longer, I would have had a major exacerbation. Eventhough that probably would have gotten me dx'd quicker. :o(

I'm really struggling lately, it's been extremely hard, I think MSBLESSED says it best about the 'fatigue monster'. Yesterday was a good day, very few tremors. Today I feel as though I could shake right off my chair and I'm hoping I don't have to get out of my office too much today, because I'm extrememly dizzy and way off balance. I'm just holding on until my April appt with the MS specialist, which it seems that is what most of us in limboland do. It's taking me longer and longer to get out of bed in the morning. I have been setting my alarm for 15 minutes earlier so I can lay there and have the tremors and dizziness settle down before I have to get up. I think I may bump that up to 1/2 hr earlier next week, since I'm still getting to work later and later, because it's taking me so long to get around in the morning. UGh.. Gotta love it...

Good luck tomorrow, hopefully you'll get some type of answer or a plan.
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


rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 3/15/2007 9:30 AM (GMT -6)   
Hey Denda

My goodness friend, i'm so sorry u'r having so much trouble right now. Know i'm praying for u and keeping u in my thoughts. I do hope this gets better for u and that u'll find many, many more of those good days. Hold on and i just know it'll get better. I'm here in u'r corner should u need me.
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 3/15/2007 9:54 AM (GMT -6)   
Thanks Rhonda!

I know you're there, thank you. It doesn't help my darn internet at home has been down, so I have to get all updated on the forum stuff in the morning when I come in to work. It helps settle me down before I have to really do anything. Thanks again, I hope you get feeling better too!
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

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