@JagersHuMom 

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JagersHuMom

Feeling let down.

Hi! So have been following the FB page for a while, a few months at least and I just decided to join the actual site so, hi! I was hospitalized due to my MS back in March 2020, just back then they did not know it was MS just that I have vertigo which meant I could not stop throwing up, could not see as my eyeballs were vibrating, and I had zero balance. I was in hospital for a week and they ran all sorts of tests but one thing that has stuck with me is that the ophthalmologist in the eye clinic looked at my notes then and there and looking at an old MRI from 5 years before said "There is a lesion on your brain, I would hazard a guess that you have MS." The Neurologist had said nothing at the time of the scan nor more recently. He did not say anything after I was discharged about it. He did not say anything after my test with the flashing red and black checkerboard which the name of escapes me right now (other then its not MS...), he never said anything after my MRI from when I was in hospital... He finally said something on May the 4th this year when another MRI came back and showed that there were more lesions... I was finally given medication on October 10th 2021.... During the time between my hospital stay and now, over a year later I have become worse in so many ways and I cannot help but feel really let down. Yes, there was the corona virus outbreak mere days after I left hospital but 5 years ago when they had the 1st MRI this was not the case... ANYWAY, is is wrong of me to want a different neurologist? I just feel like due to the above I cannot really trust him. I know I would have eventually ended up how I am now but as medication should slow the progression, I am quite sure it would not have been this soon should I have been medicated sooner.
@jesilva62

I'm sorry that you feel let down. I went through terrible episodes vertigo before being diagnosed myself last year and the diagnosis came after I demanded an MRI. I knew in my gut that there was something wrong, but everyone thought I was overreacting/paranoid (including my medical care team). I think it's important to TRUST YOUR GUT. I don't think it's wrong for you to feel that way at all. I'm sure your neurologist did the best he could - I've heard MS is hard to diagnose in the first place. But I think if you advocate for yourself and your health there's some feeling of relief (not sure that's the right word) knowing you did everything in your power to speak up for yourself. We can't change what's happened in the past, but we can learn from those experiences and make different decisions moving forward. Hope this kind of helps!

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@sprout

I can see how you feel let down. We are just a tick box exercise for neuros. I was misdiagnosed and then I had a single sclerosis, I suspect you were at that stage, only after your next relapse is it MS. Tick box. Tick box for treatment too. They don't know much about MS, it is all theoretical. I changed Neuro as the old one was only interested in getting patients on drug trials. MS nurses are usually good, they listen and actually help. Do you have one? They have time and access to your notes so they can give you an informed answer as to why the wait.

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