So, I have been diagnosed with MS since January 4, 2006. I had the O bands present at my initial diagnosis but no definite plaques on my MRI. on my second MRI I had two decent sized plaques which led to my def diagnosis. Then for the next couple years, they thought I had no plaques on my MRIs so they just recently sent me to an MS specialist to see if I had the elusive monophasic MS or had been misdiagnosed or something. So I got my hopes up that I would never have to worry about it again and not have to take injections every other night and just feel like a normal 24yo. Well the specialist looked at all my MRIs from the past couple years and told me the radiologist hadn't read them correctly and that I had more plaques, and more extensive plaques then they ever thought. Also found my B12 levels were low and that the tingling in my arms during exercise is probably due to a missed plaqued in my cspine. I can't help feeling mad and depressed and sad and confused. Am I wrong to be feeling this. I just don't know what to do right now and feel completely lied to. I just really needed to vent to people who would understand somewhat
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MS IS SUPPOSED TO BE HARD TO DIAGNOSE...
THAT'S WHAT I'VE BEEN TOLD OR HEARD...
YOU DON'T REALLY KNOW FOR CERTAIN UNTIL YOU DIE AND THEN THEY CAN DO A POST--MORTUM AUTOPSY ON YOU...HECK OF A WAY TO FIND OUT WHAT YOU HAVE
YOU CAN SEE IF YOU HAVE GROUNDS FOR A MISDIAGNOSIS SUIT AGAINST THAT NEURO
BUT YOU KNOW MEDICINE IS JUST A PRACTICE...AND WE ARE THE GUINA PIGS THEY PRACTICE UPONMS'ers may not all walk-- but, we can still roll along-so lets rock-n-roll as a power mobility group I do have an extra scooter & Powerchair The cat or my caregiver won't ride with me so maybe you could?
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I also went to Drs. Larry, Moe and Curly who reviewed my mris and determined that the spots were likely microvascular and not ms and that my symptoms did not indicate any disease which they could identify.
But I took the scans to an independent neuroradiologist for his opinion. He said there was no reason for me to have microvascular problems even though I was 55 since I was in excellent health and that his first choice was ms.
I still opted for the spinal tap which showed the OBANDS and I then concluded it was MS. While some other diseases may show OBands there are not many.
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Originally posted by naaustin View PostI can't help feeling mad and depressed and sad and confused. Am I wrong to be feeling this. I just don't know what to do right now and feel completely lied to. I just really needed to vent to people who would understand somewhat
Your story reaffirms why my MS Specialist always wants to view the hard copy of my actual MRIs, not just read a radiologist's report.
I hope you start feeling better, soon.Kimba
“When you change the way you look at things, the things you look at change.” ― Max Planck
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