Frustrated

[naaustin]

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

[JerryD]

You are not alone in your frustration and anger. And you are in the right place to vent. As I see it, the only thing you can do is keep yourself as healthy as you can. And hope and pray for the 'cure' asap. Good luck

[Alicious]

Oh, man. How disappointing. I don't think anyone lied or misled you on purpose, but I'd be really upset too. You're not wrong to be feeling bitterly disappointed, that's for sure.

I'd be tempted to get a third opinion before resigning yourself, though.

Big hugs.

[MSMOBILITYMAN]

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 UPON

[dennissr]

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.

[Kimba22]

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

So sorry to hear you got another confirmation of your dx. And, of course your feelings are completely understandable. You had good reason to believe you really didn't have MS. It must be frustrating to learn the radiologist was just incompetent when he/she read your results. Now, you have to go through the whole process of acceptance all over again.

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.

[naaustin]

Thanks everyone for the kind words! It def has been a roller coaster as I am sure yall all know it can be! Just venting that bit helped some and im sure in a couple days I will hopefully be back up in the spirits I once was!