No change in lesions

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booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/14/2007 9:41 PM (GMT -6)   
I am new here and have a question.
I have been seeing a neurologist (haven't gone back in about a year) for 3 years. MRI showed lesions in brain but not spine and blood work was fine - A year later another round of MRI's showed the same lesions in my brain - no change = no diagnosis. I did go for a last visit after that and took an MRI of my back that was requested by an ortho due to herniated disc and he noticed a new spot in my cervical spine and requested more mri of that specific area. I have not gone back yet.
I guess my question is how many of you that have been diagnosed, have been diagnosed because of changes in the brain lesions? I have symptoms such as fatigue, memory loss. foggy headed. feeling of quick burning sensations under my feet sometimes. finding it difficult sometimes to articulate - I find it difficult sometimes to hold a meaningful conversation as I forget words or just plain get distracted. I have RLS and was taking baclofen for a while but stopped. My neck, shoulder muscles are always, and I mean always tight and painful. Arms get weak/ I know that I need to go back to neuro and he is supposed to be one of the best in my area - but I thought after 2 years and numerous tests, i would have had a diagnosis and I guess I need some motivation. eyes

Gretchen1
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Date Joined Jan 2007
Total Posts : 3539
   Posted 1/14/2007 11:18 PM (GMT -6)   
Hey booboo,the

I am sorry to hear of your troubles. Hang in there. Has anyone requested a lumbar puncture?? For me that was a critical piece of diagnostic information. The lumbar puncture can either rule out MS or indicate possible MS. It indicates possible MS by showing some sort of banding pattern. The lumbar puncture can also indicate or rule out a whole host of other infections or diseases. In your case a lumbar puncture may be complicated due to the disc problem. Also, you may want to ask about evoked potentials test. It is also a diagnostic tool used for MS. It is a painless test. You say that your neuo is the best in your area - do you have access to an MS specialist neuro? I was misdiagnosed until I was referred to an MS specialist. Anyway, good luck and keep us posted. One of the frustrating things about MS is that you can go years before a diagnosis and subsequent treatment. You must become your body's advocate. Get assertive and with a ilttle luck you will find out what is happeing.

Gretchen

booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/15/2007 8:47 AM (GMT -6)   
Thanks Gretchen,

The neuro did mention a spinal tap at some point, but nothing definite. My Dr. does specialize in MS and runs an MS institute in the Phila area. It's been a year since I've seen him as I was supposed to go back with my ceivical spine MRI, but didn't. I did have the evoked response test and was told there were subtle abnormalities. I will make an appt and let you know what happens. My insurance has changed and i now pay a considerable co-pay for tests such as MRI's , ultrasounds etc. Even urinalysis testing has a price (I get a lot of UTI's as I was told I have a neurogenic bladder too.
thanks for the reply

uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 1/15/2007 9:37 AM (GMT -6)   
booboobum said...
Thanks Gretchen,

The neuro did mention a spinal tap at some point, but nothing definite. My Dr. does specialize in MS and runs an MS institute in the Phila area. It's been a year since I've seen him as I was supposed to go back with my ceivical spine MRI, but didn't. I did have the evoked response test and was told there were subtle abnormalities. I will make an appt and let you know what happens. My insurance has changed and i now pay a considerable co-pay for tests such as MRI's , ultrasounds etc. Even urinalysis testing has a price (I get a lot of UTI's as I was told I have a neurogenic bladder too.
thanks for the reply
Seems like you do need to go back to the neuro, and take that MRI of your spine with you.  When you're undiagnosed but with obvious symptoms, it's important to keep in touch with your doctor, letting him know of changes, or flare-ups of current symptoms (like the frequent UTI's), and other stuff. Let us know how your appointment goes..
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/15/2007 10:26 AM (GMT -6)   
Thanks uppity - I guess I just needed a little encouragement or maybe a big shove to get going again. When I was being tested, I always thought that I would be relieved to get the positive diagnosis. For a while there, I thought I was going crazy and friends, family just considered me a hypochondriac. I sincerely appreciate your time. I've noticed that some folks here have mentioned tinnitis. Can tinnitis be a symtom of MS? I do experience it off and on and do not have high blood pressure. I've been reading various posts and you guys are great. I'm so glad that I found this site.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/15/2007 11:28 AM (GMT -6)   
Yes, tinnitis can occur with MS..as well as other hearing loss. I've suffered with that for years. Sometimes so loud I can't hear much of anything, other times just sort of "there".
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/15/2007 6:32 PM (GMT -6)   
Thanks again. I sometimes feel as if I am in a daze or not fully awake, too. Sometimes at work. I feel self conscientious about walking down the hall because I know that I don't always walk straight or lose my balance once in a while. The symptoms are there but not bad enough to really lose work over or complain too much except for pain and stiffness. I hurt every day. Cognitive functions are not all there too = I forget words in mid sentence and just plain forget a lot of stuff a lot of the time. Anyway - it's nice to be able to come to a place like this and talk. My friends and family don't understand or just think it's all in my head.

Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 1/15/2007 6:44 PM (GMT -6)   
Hi Boo,
 
    I was just reading your thread and I see you have decided to make an appointment.  I totally understand, as many here also do, the feeling of thinking it's all in your head when it takes a while to get a dx.  Two years may seem like a long time, but for some it takes that or longer to figure things out. 
 
    Many people here keep a symptom journal.  Just an idea if you don't have one already as it can help keep track of symptoms and see if there is any pattern going on.  It might be helpful.   Hang in there and please let us know how you make out with your appointment.
 
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booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/15/2007 6:55 PM (GMT -6)   
A symptom journal sounds like a great idea.
Thanks

rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 1/16/2007 10:48 AM (GMT -6)   
Hey Booboobum

I'm jumping in a little late, but wanted to say i'm really glad u found this forum and are seeing u'r doc again! Hopefully that'll prove fruitful for u and u'll get some much needed answers. Kimber gave u excellent advice on the journal. It's so hard sometimes to remember things that happen, but throw in there memory probs and u'r done for! Please do let us know how the appt goes and how u'r doing.
rhonda
Co-Moderator, MS Forum


booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/16/2007 12:19 PM (GMT -6)   
You guys ROCK!
Thanks for making me feel so welcomed and comfortable.

ConfusedGal
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 1/16/2007 12:35 PM (GMT -6)   

Hello,

 

I am sorry you are going through this...You should request an LP for sure. Mine didn't hurt at all. I know people have different experiences but mine really did not hurt. And at least in my case, even though I had lesions, symptoms, an attack, AND a positive LP (4-obands) I still didnt get a diagnosis. I got a "most probably MS" but thats it...no meds no nothing. Then my second set of MRI's showed new lesions plus a cervical spine MRI showed inflammation also. THEN I was diagnosed...Depends on the doctor.. But to be honest with you, I wouldnt have started meds if I didnt have a change in lesions...I am not someone who wants to medicate myself without knowing 100%...as difficult as it is, you are better off not taking such intense meds if there is no definite reason to... (That is MY opinion but others differ..) I only went through it for 5 months and it was so tough...2 years must be crazy!!! Look for another good doc if need be. I found my doctor on the National MS website and referred to the chapter in my area...


booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/17/2007 3:47 PM (GMT -6)   
Thanks  - I'll bring it up at my next appt. I have had 2 epidurals before so I would think that it would feel about the same? 1 when I had my daughter 7 years ago and the other when I had a hip replacement 3 years ago.

Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 1/17/2007 3:55 PM (GMT -6)   
Hi Booboo -

Much easier than the epidurals! Although on my 2nd one, I did get a spinal headache which was the worst pain I have ever had in my life, but the Dr told me that it probably would happen since I was 'tapped' twice in 10 days and they used a bigger needle on the 2nd go. Nice, huh? Definately don't hesitate on getting an LP. I'm still waiting for my results from the 2nd one... 12 days and counting...

Good Luck!
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


booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/17/2007 4:06 PM (GMT -6)   
12 days? How long does it normally take to get the results? Thanks for the pep talk. I know I need one more cervical spine MRI before he will consider it so I'll get my caboose in gear. I've had a lot of encouragement through the folks at this forum so I will definitely update when I go see the neuro.
migraines since 1974
septic hip - 1999 with birth of daughter
hip replacement 9/2003
MS limbo since 3/2004
dx IBS - 5/2005
dx acide reflux - 11/2006
dx compressed L4-5 and T 7-8 - 5/2006
dx RLS - 9/2006
 
Clonopin, hydrocodone, prevacid and anything else that helps!


Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 1/17/2007 7:53 PM (GMT -6)   

Usually a week is what everyone is telling me here.  My first LP info result or lack there of was within about 8 days, including a holiday and weekend.  But the neuro's office did tell me U of M is pretty slow and they have been known to take a couple weeks.  I live in a rural area so the spinal fluid gets sent to the University of Michigan from our local hospital.  I'm giving them until this Friday and then I'm going to start becoming the squeaky wheel.  I've went through all the possible scenario's in my mind a million times, I just need to know now. :-)

Hopefully your results will come sooner.

 


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
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/17/2007 7:55 PM (GMT -6)   
Booboo, again best of luck to you!  I hope you do get some answers soon.  Try to hang in there, we'll all be here for you along the way.   The lp results typically take about a week or two to get back.
 
Denda, goodness I'm sorry you got the headache this go around sad Hopefully you'll hear something soon, please let us know.
 
 
 
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Allow Healing Well to continue to help others, clink link for details
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