Not sure what foot to put foward (ha ha ha) – deciding on treatment

Hello,
This is my first post – I suspect I’m one of many shy sufferers who have learned much from these forums but feel a little guilty asking questions, but it just hit me today that this forum is all about questions and sharing! (Duh!) So here goes…

I’m a 36 year old diagnosed in 2009 with CIDP after six months of illness – though I hadn’t felt “right” for years. At first I had extreme fatigue and weakness along with neuropathy symptoms that lasted for weeks and then went away. My neurologist diagnosed Lyme Disease, put me on three weeks of oral and then months of IV antibiotics. It seemed like I was getting better until I was hit with sudden and severe pain that started in my back and spread.

Though I am still mobile, I suffer severe and constant pain, for which I have to take the usual litany of pain meds. I have episodes of extreme weakness that come and go. I get the twitches all over, tremor in my hands, cramps in my hands and feet, and fatigue/sleepiness so intense that I fall asleep at my desk and have to sleep all weekend. Like most of you, my life has been stolen by this illness, but I thank God I can still walk at all.

I have had seven months of IVIG, which have had little impact on my condition. We tried high dose intravenous steroids, which greatly reduced the pain, but only while the meds were in my system. My neurologist refuses to give me Prednisone because of the side effects – I have already gained weight since getting ill, which has exacerbated my apnea.

I went for a “second opinion” a few months back with a famous doctor here in New York, who ended up giving me the brush-off, if you can believe it.

I know that at this point many move on to plasmapheresis, and this is what my neuro has recommended, and I already have met with my hematologist to undertake this next step. But something in my gut is stopping me from wanting to go ahead with it. I’m not sure why because from what I have read here on the forums and in my books, it is fairly safe. It bothers me that my doctors talk about all this as a “trial and error process,” and I am hesitant to go ahead with something so invasive and have it turn out like the IVIG: months of waiting for a response, missing lots of work, going further into debt, never knowing whether I am getting somewhere.

Perhaps I am afraid or just exhausted (living in NYC makes every doctor’s visit or trip to treatment ten times as difficult… so many subway stairs!), but I do not want to go forward with this and am wondering if I should seek yet another opinion. My family is in North Carolina, and I am considering trying Duke Medical Center’s Neurology Department, which has a pain clinic and it looks like they are doing trials on difficult conditions.

So what I would like is a little advice from some of you seasoned patients – how many 2nd, 3rd, 4th opinions did you get before starting aggressive treatment? Did your decision to go ahead with treatments rely solely on your own judgment, or did your doctor’s give you the confidence that they had a good chance for success (as mine obviously haven’t!)? Also, if anyone happens to be a patient at Duke, if you would be willing to private message me about your experience there, I would appreciate it.

Thanks so much for taking the time to read this unintentionally long post, but I guess this serves as a bit of an introduction. I feel so much warmth and love when I come here, and I appreciate the time each of you take in your posting. I look forward to being a part of your community and hope I can help in some way. If any of you live in NYC, I would love to be invited to a support group!

Thanks,
Jen