My trip to the neuro

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Jenny R.
Regular Member


Date Joined Sep 2006
Total Posts : 162
   Posted 4/24/2007 1:40 PM (GMT -6)   
Well I went for my follow-up appt today at the neuro.  She is sending me for another brain MRI, since it has been a year since the last.  I also have to get some more bloodwork done, ESR, Hemoglobin, T3, T4, TSH, Lyme titers again, and metabolic profile.  I felt so rushed.  She wanted to send me for a spinal tap, I asked about the EVP, she said that usually they don't pick nothing up unless there is numbness, not for the bug crawling feeling that I have had for 6 years now.  Oh yeah, gave me nortrptyline (spelling?), can't read her writing, sorry.  I thought that the EVP should be done when MS is suspected.  I asked her what she felt was wrong with me, she said, post viral.  Maybe small fiber neuropathy, might not ever know the cause.
 
I feel like she is putting me aside, do you think I should find a new neuro?
 
She doesn't know what this may lead to someday, she never even mentioned another brain MRI, I brought this up to her, and she said ok.  But doesn't believe in EVP, SSEP, but wanted to rush a lumbar puncture.  Does this make sense?
 
Sorry for the whining, I'm frustrated.
 
Thanks, and have a nice day :-)
 
Jennifer

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 4/24/2007 1:55 PM (GMT -6)   
Hi jennifer,
I'm sorry you are still having the run-around! I don't nkow why she wanted the lp but not an mri unless she is still thinking virus?? It's good you spoke up! After all your results come back if you still feel she isn't taking you seriously then by all means find another neuro.

EVP, etc... aren't neccessarily great tests to diagnose ms, I had the evo done twice but it was normal and my neuro just said it didn't make any difference to him..diangnosis wise.

Feel free to whine...it's quite alright!

I hope you have better days ahead.:)
Michelle ><>
Co-Moderator MS forum
 

Ever stop to think, and forget to start again???



Jenny R.
Regular Member


Date Joined Sep 2006
Total Posts : 162
   Posted 4/24/2007 2:51 PM (GMT -6)   
shellypoo, thanks for the post.  I have been having symptoms for 6 years now, I was extremely sick for 3 months before all these weird feelings started.  I was so nauseated and fatiqued, lost 35 pounds, my parents would take me to the ER numerous times in the middle of the night, to only be told that it was a virus.  My husband almost divorced me, at that point I was so sick, worst nausea ever, even worse than morning sickness with my son, I really didn't care if he did.  Then as soon as the nausea went away, and I started feeling better, the bug crawling sensations started, its been downhill since.  I had my first brain MRI last April, after 5 years of having this weird stuff going on.  It was normal, my C-spine was normal also, besides a diak problem.  She said to wait, someday it could go away, post viral.  Then it may turn into something else.  She said its not MS, multiple myeloma, lupus, my ANA was normal, sed rate, good.  Thats when I spoke up and asked about another MRI.  I'm really scared thats its MS, she feels that its not, she said that alot of time there is lesions before there are symptoms, and after 5 years there should be lesions showing.  I have read differently.  Thanks, Shellypoo!!!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 4/24/2007 3:57 PM (GMT -6)   
Jenny R. said...
Well I went for my follow-up appt today at the neuro.  She is sending me for another brain MRI, since it has been a year since the last.  I also have to get some more bloodwork done, ESR, Hemoglobin, T3, T4, TSH, Lyme titers again, and metabolic profile.  I felt so rushed.  She wanted to send me for a spinal tap, I asked about the EVP, she said that usually they don't pick nothing up unless there is numbness, not for the bug crawling feeling that I have had for 6 years now.  Oh yeah, gave me nortrptyline (spelling?), can't read her writing, sorry.  I thought that the EVP should be done when MS is suspected.  I asked her what she felt was wrong with me, she said, post viral.  Maybe small fiber neuropathy, might not ever know the cause.
 
I feel like she is putting me aside, do you think I should find a new neuro?
 
She doesn't know what this may lead to someday, she never even mentioned another brain MRI, I brought this up to her, and she said ok.  But doesn't believe in EVP, SSEP, but wanted to rush a lumbar puncture.  Does this make sense?
 
Sorry for the whining, I'm frustrated.
 
Thanks, and have a nice day :-)
 
Jennifer
She want's to do a spinal tap because your MRI's are coming back normal.  Have you ever had a spinal tap done?  It could indeed show if there is an infection -- viral or bacterial or otherwise -- lurking somewhere in your body. This WON'T show up on an MRI. It MAY show up in bloodwork, but more likely will show up in a spinal tap.
 
EVP's indeed won't pick up sensory stuff, like the "bug crawling" feeling. They're designed to pick up nerve transmissions that are affecting muscles -- and the "bug crawling" feeling isn't that.
 
With all the other stuff coming back "normal", seems to me that a spinal tap is indeed the next step toward trying to figure out what's wrong with you.
 
And indeed -- you may never know. Viral (and some bacterial and other) infections can cause damage to your nervous system and not be traceable, once they're gone.
 
I think your doctor is telling it straight, doing the proper tests, and trying her best to figure out what's wrong. You need to be willing to undergo what tests she's wanting, to help her do her job.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Jenny R.
Regular Member


Date Joined Sep 2006
Total Posts : 162
   Posted 4/24/2007 5:47 PM (GMT -6)   

Uppitycats, thanks for the comment.  I only ever had 1 brain, and 1 c-spine MRI, I thought that most neuros repeat these every 6 months to a year.  She already told me that even with a positive spinal tap I couldn't be diagnosed unless I had lesions show on MRI.

I told her I was concerned about MS cause my gram had it, diagnosed at 60.  This was my first visit, 9 months ago.  She asked me how she was diagnosed, I told her by LP.  She then turned around and said thats impossible, she probably had something else wrong with her because of her age. 

Thanks for your help and cooperation yeah

Jennifer sad


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 4/24/2007 6:11 PM (GMT -6)   
Jenny R. said...

Uppitycats, thanks for the comment.  I only ever had 1 brain, and 1 c-spine MRI, I thought that most neuros repeat these every 6 months to a year.  She already told me that even with a positive spinal tap I couldn't be diagnosed unless I had lesions show on MRI.

I told her I was concerned about MS cause my gram had it, diagnosed at 60.  This was my first visit, 9 months ago.  She asked me how she was diagnosed, I told her by LP.  She then turned around and said thats impossible, she probably had something else wrong with her because of her age. 

Thanks for your help and cooperation yeah

Jennifer sad

I don't know that neuros routinely repeat MRI's unless they think that indeed what is ailing the patient will eventually show up there...and if your neuro does think that what is causing your problems is a viral infection..then she'll not be inclined to do an MRI.  And nowadays neuros are indeed saying that without lesions on an MRI they won't diagnose MS, even with a spinal tap.
 
Why? Because a positive spinal tap shows LOTS of things..besides MS. And what might be ailing a patient might NOT be MS.  We've had this discussion before -- I agree with your doctor -- given your grandmother's age, it is really really unusual for her to have had MS.  You said I think that there wasn't an autopsy done upon her death, so there really is no way to know *for certain* that she had MS...just a doctor's opinion that what was ailing her was MS.  Again -- if your grandmother had a "positive" spinal tap - -it could have been "positive" for a host of ailments, including MS...but other things, too.
 
You might want to ask your doctor something like..." OK...if I agree to submit to a spinal tap, and it too comes back negative, THEN what? I'm still experiencing all these sensory things...nothing is coming back pointing to anything; where do I go from here??" and see what she says.
 
But again...she may also be right. Sometimes there really IS no definitive answer; all that can be done is continue to watch and wait, and MAYBE over time, something more will develop. Or maybe not.  Your grandmother lived until 60 without a diagnosis....maybe that'll be what could happen with you, too.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Jenny R.
Regular Member


Date Joined Sep 2006
Total Posts : 162
   Posted 4/24/2007 6:32 PM (GMT -6)   

Uppitycats,  My gram had symptoms for about 10 years, they started when she was 50, they did all kinds of other tests, they didn't have MRI then, I don't think.  I know that she had NCS done, because at first they thought maybe carpal tunnel.  Then after the other test they did the spinal, and thats what they said, MS.  She kept a journal about her MS, and she had written in there, her new neuro, a very well known, neuro from UPMC in Pittsburgh, told her that if she was younger they would call it MS, but at her age its called disease of demyelination.  I'm in the process now of getting her medical records. 

She had numbness and loss of function in her arm, thats where it started, and then came the leg, same side as arm, the left, and about 3 years before she passed away she started having bowel problems, and eye problems, they told her from her last MRI that she had for the eye problem that she had what they called a stroke of the eye.

Thanks again Uppity!!!

Jennifer :-)

 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 4/25/2007 6:41 AM (GMT -6)   
You know, of course, that just because your grandmother might have had MS, that doesn't mean that YOU have..or may develop..MS. I still think the spinal tap is a good idea in your case, where there are so many negative test results coming back, and you still experiencing symptoms. After all, it WAS what diagnosed your grandmother ...maybe something will show up there. I'd probably have that done before spending money on another MRI, if I were in your situation.
...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 4/25/2007 6:49 AM (GMT -6)   
Yes, don't hesitate on getting the spinal Jenny. I like how Uppity explains what to ask after you agree to the spinal. I've gotten into this type of questioning. At first my doctor was taken back by the constant questions like that, but once all the test results started coming back in, she was really glad for my questions.

You could get a that magic answer with the spinal or you could get nothing (like in my 2 cases), but it's a little discomfort for hopfully some type of advancement in your treatment. Hang in there! I know... easier said then done! ;o)
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
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/25/2007 3:45 PM (GMT -6)   
Hey Jenny!

I'm sorry i'm so late jumping in here. I can't really add anything of value to what's already been said, but wanted to tell u i'm thinking of u and hoping u get some answers soon. I agree....have the spinal tap done and glean what u can from it. It can't hurt and can only give u helpful info. I do hope u get some answers soon...i'm right there with u...no answers and lots of symptoms...i totally understand u'r frustration. Take care Jenny and let us know how u'r doing and if u decide on the spinal.
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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