Should I trust my doctor's dx?

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eternalsunshine
New Member


Date Joined Feb 2009
Total Posts : 2
   Posted 2/16/2009 10:20 PM (GMT -6)   
Hello-
   I started having pain, numbness, trouble walking and vision problems in 2005. They did an MRI and found a lesion. That coupled with my symptoms made them suspect MS. They ordered a lumbar puncture and that also showed evidence of MS. It said something about there being bands where there shouldnt be. They put me on a 3 day solumeldrol IV and that made me feel a lot better for about a month. At that time I saw a MS specialist. He said he didnt think I had it and but just in case he ordered an upper spinal mri which was normal. I went back for another brain MRI last month and there is still just one lesion. I have totally dismissed MS but I was wondering if there is still a possibility I have it. I am at my wits end. I have just  seen a rheumalogist and he doesnt think its arthritis either.  I need help!!!!! thanks!!!

odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 2/17/2009 8:03 AM (GMT -6)   
this not-knowing can be so frustrating! i saw at least 3 neurologists before finding one at a teaching hospital who came to the diagnosis for ms. certainly not an expert, but if the symptoms are troubling, no law against seeing another neurologist to find another take on your situation. good luck! hope a fresh view of your symptoms could finally get some answers. don't forget that all tests are your property, so take them with you if you do decide to get a different view. linda

eternalsunshine
New Member


Date Joined Feb 2009
Total Posts : 2
   Posted 2/17/2009 8:22 AM (GMT -6)   
thanks- Having other people who know how I feel is the only thing that makes me sane. I'd really like to know if there is still a possibility. This is actually my second neurologist. The 1st one called me un- lady like because I hadnt shaved my legs and asked me every question that didnt have to do with my condition like who pays my rent. I went straight there from bussing tables all day and he called me dirty. Duh! I left the office hysterical. This second guy had been ok until I told him I had no symptoms while I was pregnant and he said Good that means there is nothing wrong with you. Ugh, obviously there is SOMETHING wrong with me. I am running out of neurologist.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 2/17/2009 8:29 AM (GMT -6)   
Hi Sunshine,
 
I just got to your post and I really have to run out the door.  I think you need to consider a second opinion for sure.  You are caught in a rough spot with one doc saying MS and another saying "I don't think so".  I know that you only have one lesions but that just means you have one lesoin showing up.  Try to sit down and really think about your past.  MS takes a history of "episodes" that can somehow correlate with inflammation and or lesions.  If you truly have had only one lesion and one episode then you need to discuss CIS (clinically isolated syndrome) with a doctor.  This can be a precursor to MS and can sometimes be stopped with aggressive treatment if your doctor will go with that.  Ok some things to think about.  Ask more questions.....we are ready and waiting. 
 
Welcome to the boad.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 2/17/2009 9:14 AM (GMT -6)   
yay! a genuine working hairy-legged womyn! love that hairy look! as i recall, i had the mri both with and without contrast. the final clincher was the spinal tap. also, i saw a neurologist at jefferson in philly and he was the only one to take me seriously. been dx 5 years, but neuro says i probably had ms for decades but nobody bothered to test for it. seems that in my case, going to a teaching hospital was what i needed. they looked beyond the easy answers (and my hairy legs) and didn't stop until they get a definite dx. the neuro even consulted other specialists in his field. i would think that having one lesion in an important place could wreck havoc with your body. linda

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 2/18/2009 9:46 PM (GMT -6)   
When in doubt, always opt for a second opinion. I was evaluated by two neurologists who misdiagnosed. A third at the major teaching institution nailed it. With some neurodegenerative diseases it does take time for specific markers and symptoms to develop before a probable dx can be made. If a doctor is ever offended that you are getting a second opinion - then he or she scares me. Most specialists have an open door policy and are never offended when a competent peer does a reevaluation. An inappropriate treatment plan can ruin the quality of your life.

Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 2/18/2009 11:07 PM (GMT -6)   
I agree. A very good neuro gave me my initial diagnosis and he referred me for my second opinion. He was pretty insistent. A good doctor will want other opinions.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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