My main question DP—–did he treat your cidp effectively???  I have read that he is more aggressive and able to treat cases that haven’t responded to ivig.

He has several reputable articles published and was mentioned positively in a cidp conference held in November.    I’m hoping given all this –that he knows his stuff.

I have been warned that his bedside manner is not good—-but that’s okay as long as he can treat cidp effectively.  I don’t need him to be my friend, I have enough of those, I really need a Dr who knows CIDP .

What specifically did you not like about him—his bedside manner or cidp treatment?   What about the hospital/infusion area–is it a good place to go for infusions?

wrapping up this post on the rituxin…. i had some hope in the beginning that it was working. I had periods in the first few months where i was experiencing many sensory changes and hoped they were nerves reawakening.  it is so difficult to tell with this disease, with the good days, bad days, fatigue from overdoing it when you do have good days etc…etc…  I’m sure you all know what im talking about.

anyway, it has been 6 months since my rituxin infusions, i do not have any significant increase in strength. I am coming to the conclusion that rituxin did not work for me.   It’s confusing, because i do have a confirmed case of cidp. so far any attempt to alter my immune system has resulted in less fatigue, feeling better in the very beginning, some sensory return—-yet all of these feelings have been very short lived and i seem to go right back to square one shortly after each treatment.  It has been this way with ivig, PE and now rituxin.

Possibly i just have a very resistant immune system?????  IDK……..any ideas?

I have sent off all of my paperwork for the sct and am waiting to see if i am going to be accepted, then will start the loooong process of insurance appeals.

I have also made an appointment with a Dr at St Elizabeths—one of the centers of excellency, with Dr Gorson.  i requested a consult and hope he will take over my treatment for cidp in the event i dont get accepted for the sct, plus i will need someone from now until then.  I am currently having no treatment–other than the rituxin already done in june 2011.    hmmm… im currently doctorless and treatmentless–lol—not a good way to be starting out 2013.

hope everyone had a nice holiday—would be nice to see the forum active again for 2013–it’s such a great source of information and especially helpful for those newly diagnosed.

if anyone has any helpful advice to add for st elizabeths or dr gorson feel free to post!!

Pat–I have spoken with Paula at Northwestern and she e-mailed me all of the paperwork for the sct. I have some tests scheduled on the 19th–next week.  If they show cidp  to be active still, then i will apply for sct.  I had rituxin 6 months ago.

So yes, have started sct process–am not wasting any more of my life with this disease.  I have said all along that I do not want to be having “treatments” the rest of my life and will do whatever it takes to be free of them and cidp.

The timing is a little better for me now than in the past for the sct, my youngest son has his license now, so that makes things a little easier, as he is involved in many sports, activities etc, doesnt need me to drive him everyplace now.

Was diagnosed in june of 2009, its been a loooong three and a half years, im ready to be done with this.

May I ask who you have for insurance?  i have anthem and am expecting to have to go through the appeal process with them if i get accepted into the program—ugg!!  im still in the appeal process for the rituxin.

I also went to Mayo–but the rochester MN to see Dr Dyck.  He also felt i have cidp–but “atypical”  unsure if that will affect sct or not. He said it is definitely inflammatory, but i dont have predominate demylination which is why its classified atypical. I have had the sural nerve biopsy and lumbar puncture which both showed signs of cidp.  I guess the only way to tell will be to try.  Im sure Dr Burt is not going to want to do a sct on people who he doesnt think it will work for–especially since it is still in the clinical trial phase.

good luck with your process—I hope you get the insurance approval.    Lori

Thank you for that Ann—-I have asked that question so many times “how can we tell if it’s still active or not”  now I will pay attention to the screen static and crackles during my next emg and specifically ask if that is active cidp showing on the screen.  I would think, yes that the signs of nerve damage would be relatively the same as you mentioned above, even though the causes may be different.

My emg test is usually very loud on the screen and very painful when the needle is inserted into my thigh muscle. sometimes the charley horse pain created from the needle can tighten and be painful for weeks.  As much as i hate the emg test, I do really want to know whats going on since i started this rituxin.  Im having a hard time determining  what is going on, mostly in the past week. If Im feeling normal side effects from rituxin, mere fatigue that may pass over time or is rituxin worn off or not working and cidp active??? Lori