Wow that is reallly rough. I am sorry you are so unhappy with your doctor. You can absolutely have MS with lesions and a "clear" spinal tap. The oligoclonal bands are not a hundred percent thing otherwise they could use that as a surefire way to diagnose MS. I am so glad you are going for a second opinion. You could call the doctor's office back and ask for the name of the test he orderd so you can be sure that it is the evoked potentials. That would also remind them to get on that. Ask for a timeline for that, or when you can expect that test to be ordered and when that date comes, make sure you have been contacted and if not call the offfice back and start leaning on them so this gets done.
Don't every worry about your threads or posts sounding down. We want to hear how are doing. You have every reason to be frustrated. Good luck with your second opinion and the evoked potentials. I truly hope you get some answers that leads to treatment.
Love and prayers,
Hey, cocoa, sorry to hear about the neuro, but it sounds like my story. Remember my 8 years until diagnosis. I've heard it also. Well, they weren't sure about all the symptoms and I was sent to specialists for Lupus and Jorgens syndrome (spelling wrong on that one) and a whole lot of other things including vasculitis etc. So be patient, it is hard sometimes but stress is not helpful. So have that glass of wine and try to relax.
I will be thinking about you on Friday when I know you have the test at the hospital. Ugh. but at least you are being proactive and getting to the bottom, pardon the pun, of that problem. ha ha. And I agree with Annie, you did not wimp out with the neuro, sometimes they can be intimidating, as I am with mine, very intimidated at times, they are supposed to know more than we do and there fore an authority figure. It is hard to stand up and oppose their way of thinking or to bring up things that my upset them in case we get bad care.
You certainly didn't let anyone down so relax. You are getting a second opinion and that is what you need to do. Keep going and trying to find answers and one day there will be the answers to what is happening in your body.
Keep posting and keep in touch and remember we care and so enjoy communicating with you, no matter how you are feeling, we need to keep in touch. I care about you and want to help any way I can.
I hope your endoscopy went well, and you are feeling better. Hang in there, I do know how incredibly frustrating it is to be sick and feel like your symptoms are just being dismissed. I have found that not all docs see things the same way, and with MS being a clinical diagnosis in the end, there can be a good deal of variation in how docs interpret findings and diagnose.
For example, within the space of a few weeks, I had two different neuros examine both me and my test results, and give me totally different and conflicting information. I have to say that this huge difference of opinion was not very comforting, but one neuro was very clearly the more reputable, and he got me headed in the right direction. So, don’t give up hope that your second opinion doc and the evoked potentials can lead to some answers.
Take care, and let us know how you are doing,