I don't even know if it's MS...
This is a long post, as I hope you have patience to read it all.
In 2022, I went to the first of 4 neurologists, who after I underwent 2 MRI's, gave me no substantive information from the report. And so I waited 16 month to see #2, who sent me for 5(stat) MRI's. As a result, and upon not hearing from him (remember, he ordered stat MRI's) for 34 days, he told me he wanted me to go to an MS clinic, because of a possible demyelination issue and he wanted torule it out. But as this particular MS clinic is a
fair distance, I chose to see neurologist #3 at a local hospital. # 3 just told me without any testing
that he didn't believe it could BE MS, and suggested Parkinson's trial medication. At this point, I am
pulling my hair out over drs who have each been to college 13 years, to BECOME neurologists. And
so, onto #4. #4 , in my opinion, after sending me for a carotid doppler, told me there was nothing serious, I am now at a standstill.Keep in mind that none of the 4 doctors asked me
anything about family history. I mean, how do you see 4 doctors who don't talk to you about family history, even if it IS in your chart?
So, now I am beginning month #29, and no diagnosis.
But in all honesty, I don'r feel as though I have fallen
through a crack, because I AM, indeed the CRACK....
Carl Beigle
Hi Carl, thanks for taking the time to share this all too common and all too frustrating experience in getting a proper diagnosis or answers to your symptoms. The challenge with MS, is that there's no one single test to definitively confirm if someone has MS. So, it's often a process of elimination, which can often drag out the process. It sounds like you haven't received the answers or support that you want and need from the many neurologists that you've seen and are still really frustrated (and rightfully so) that you feel a bit in limbo. You mentioned the MS center, although it is a distance, is it possible for you to arrange a way to get there. It seems like you might receive more expert care there. Perhaps they do virtual consultations to start. I know for a proper MS evaluation you do need to be in person, but maybe there's a virtual option to start if you can't get there in person.
Either way, we're glad that you're connected here so you can be supported by people who get it in the meantime! Keep us posted on how it all goes, if you feel comfortable doing so. We're thinking of you and hoping that you get answers soon.
Best
Alene, ModeratorI want to thank you guys for your kindness and understanding, as I have stated my particular case.. After neurologist number 4, I just decided that I needed a break, as I felt like a "squirrel on a wheel", working hard and getting nowhere. So the break is helping and I utilize several AI sources to give me, at least some idea of what might be happening, even if it's not a diagnosis. So you guys have a great day 😀
