Hi 4-eyes and southblues. Thank you for your thoughts on this. I am definitely going through a flare up of some sorts and it's just something new every day. Whether it's my, not being able to move my forehead, my drop foot, weakness, tiredness, or what I described in my initial post. Unfortunately I have yet to receive treatment. I'm 9 months into this and my first flare up went away on its own. It does not appear that this second flare up will go away on its own though, as it continues to progress and worsen every day.

I have gone to the ER 4 times and have not received any help. Some days I want to give up and just beg for someone to finally take care of me and treat me already. I am in the process of a new workup from a new neurologist. She seems great and she seems as though she will help, but the waiting process is just awful. I had my blood work this past week (24 vials - I am 5'6 and weigh 118 - I think I'm losing a lot of muscle because I keep dropping weight though my appetite has improved) and I can't seem to recover my energy from the blood work. I have another MRI and another Spinal Tap as my most recent ones were done 6 months ago. My EMGs are all recent.

So I just have to wait until Feb 12th when I see the Neurologist again. If I can't get in with a Pulmonologist before then, I will have to push back my Neurologist appointment, because she wants the Pulmonologist's input on whether or not to do a Phrenic Nerve test. I've had the workup, but Pulmonologists are impossible to get in with in NYC.

I've learned that whether or not I call a doctor to tell them about a new symptom or whether or not I go to the ER, nothing progresses. I get no relief and I don't know how to speed things up. I feel that NYC probably does have some of the best doctors, but the trade off for that is the waiting and the struggle to get in for other appointments and getting seen.

I have found that I can post on here and you guys relate to me and respond so quickly. How do you know when to say I really need help? How do you know when you really actually do need help? How do you make them hear you when you're saying it's time, I don't know how much longer I can function on my own, it's no longer safe? What are your options? Where do you go? What do you do?

I just don't think waiting two more weeks for some treatment is right, I think I need treatment now. And I don't know if that's the wrong thing to be saying to my world class Neurologist.