Could the neurologist be wrong?

[Hez64]

I was diagnosed with MS, have a couple spinal lesions and some small lesions showing in brain, but not in the areas typical for MS. I do have a positive LP, MS symptoms of relapsing remitting, no Optic Neuritis and they say they have ruled out all the mimics. I am injecting with DMDs, but wonder to myself, what if they got it wrong and I really do not have MS. Does this happen and would this happen with the test results above or am I just not accepting it? Im wondering if anyone has any thoughts or advice on this?   Thanks Hez

[Corriel]

Hi there, I questioned my dx at first because my neuro originally didn't think it was MS. My vision loss was not typically associated with the disease and I didn't have typical symptoms either despite multiple lesions shown on my MRI. When the spinal tap showed lots of inflammation and he had ruled out a host of other diseases he siad he was sure it was MS.

If you think a second opinion will help then you should ask for one. I almost did then sat back and wondered what I thought was left to consider. Everything else had been ruled out so I guess that was my denial. I think everyone differs in the way they cope and I'm glad you started dmd therapy.

[HVAC]

You can get a second opinion. I did and he said yes it is MS. I have had MS a very long time and so far I only have three lesions. I had 12 o-bands on my LP. I thought I did not have MS. Mine is progressing so slowly I still sometimes think I am going to go into the MS Specialist and he is going to say no you don't have MS. He has not said that.

Alex

[Hez64]

Thanks everyone for your replies. I guess that's it really isnt it, just coming to terms with it and accepting. When I feel good this is when I start to doubt his judgement,  silly when I think about it! I know myself Im not that same as I was 3 years ago.  

[SarahL2491]

denial is common in the beginning and some of us still slip into periods of denial............its like the 5 stages of dying, only we go in and out of them repeatedly, some more than others.

Sounds like your neuro has covered all the bases, and its ok to take your time in accepting it..........its hard to give in to the monster but welcome to our little corner and the club no one wants to belong to.......  You are indeed lucky to have a Dx this soon, it took me almost 30 yrs to get mine, no MRI in the beginning and idiot neuro's inbetween.

[jen673]

I still have those questioning thoughts too.  I even asked my neuro how sure he was and he said 99.9%.  Lol.  I wasn't doubting his ability but just needed to hear that from his mouth.  Ever since then I believe I have come to grips with it.  I think it's just our human nature to question and it is also part of the healing process after learning you have this disease.  

I also found it hard to believe at first because I have minor symptoms.  I thought I had carpel tunnel for years.  It was L'HERMITTES that I got diagnosed and lesions on brain/spine on MRI.  

jeny

[kwarendorf]

Hi Hez - As Tammy said, it does seem as though you i's are dotted and your t's are crossed. As hard as it may be to come to grips with the knowledge that you have MS, I would imagine it would be harder still not knowing.

I was talking about this with my girlfriend the other day. I have a small list of seemingly unrelated, everyday symptoms. Before I knew I had MS I was chasing individual symptoms. I found no answers and the symptoms continued. Learning that I have MS connected all the previously unconnected dots.

This allowed me to attack the real problem head on. I already had the symptoms. Now I have a plan :-)

Kyle

[maxthecat43]

Unfortunately, the only way to be truly certain you have MS is during an autopsy...   Otherwise, it does sound like the doctor made the right decision.  I'm sorry, I wish I had better news for you.  It's common to have feelings of disbelief.  I used to struggle with them myself.

Tammy