Thanks all,
I've had a quick look at myasthenia gravis, I can see some similarities. I have had an LP, EEG, Brainstem potentails. The only blood I have had taken was when I had the LP. I did bring this up at one of my appointments but it seemed to fall on deaf ears. He simply pointed out that the LP was normal. I have this SSEP coming up which I think will show something as it is the most related test to the symptoms I am having in my legs and arms.
Just to say this forum is keeping me sane. Thank you.
Anna has said it well, and Stephanie is right that you should get checked for MG for your ptosis (droopy eyelid). What you say about the neuro's comment about the "UBO" doesn't make any sense at all. I'd write that question down--"Why did two different MRIs seem to identify a single lesion in two different places?" and make sure you get a clear answer to it.
I also find it odd that he's talking about Rxing those things without doing various ruleouts via bloodwork, etc. What bloodwork have you had done?
Bio
Hi Twist,
I am also in limboland with non specific lesions in my brain mri and no one ready to make any diagnosis, so I can relate to your frustration. In fact, I said the exact same thing to my husband after my appt's with nuero #2 and Rhuemie #2 (who undiagnosed Fibromyalgia), that I felt further behind as now there is NO reason for my symptoms!
I have found support here to carry on and keep searching for answers as elusive as they seem to be. I also said they could call it whatever they want but I need some reatment and help for my symptoms and that seems to have helped me get some better pain relief with increasing the Amitriptyline and some codiene until neuro #2 suggests something else. I have follow up on April 19.
I just wanted to say that your symptoms are definately not "nothing" and I am sorry you are having to go through this. Keep pushing for answers and don't give up on yourself. I mean who knows better how you feel - your dr or you. It just infuriates me when the medical community dissmises our suffering because we don't fit neatly into the typical category.
I was sent home once form the ER being told I was having a panic attack which later showed up as needing emergency gallbladder surgery because I didn't present the typical gallbladder symptoms. My point - dr's don't always get it right. It might be time for another opinion not connected to your other dr's.
I am glad you are getting some symptom relief for now. Hoping you'll find some answers soon, Anna
Hi, This may be something that's already been checked by your doctors, but with the droopy eyelid, I wonder if you've ever been checked for myasthenia gravis (MG)? I think there's a farily accurate test for that.
Stephanie