Hi seishin,

I am sorry to hear about your difficulties as well. I absolutely sympathize with your situation, as I have been in and out of the ER without any help. Fortunately my last stint in the ER brought me a Neurologist that seems very open to my symptoms.

While I am very new to Pulmonologist appointments, I do know that they did a Pulmonary Function Test that showed that my lungs were working properly but that my muscles were not functioning properly. I have not yet seen a Pulmonologist yet. I do hope that you are able to get this test done as it was very informative for me. Please let me know how your Pulmonologist appt goes.

I did want to post an update. I have had an increase in symptoms, I am having difficulty enunciating words, my speech may be slurred a bit, I'm not entirely sure how I sound to others. Also my thighs have become increasingly weak. I spoke with my Neuro this morning and I am going to get my first round of IVIg after my LP on Friday. I am so relieved that I may be receiving treatment soon as this has been going on for months and my symptoms have been increasing daily at this point. My Neuro and I are in contact and we have decided to hold off on going to the ER, mainly because I really didn't want to go and there is very little they could do for me there. So I am happy with the current decision and will update everyone after my IVIg.

seishin, Please let me know how things progress with you. You're in my thoughts!