Your Replies

  • January 22, 2013 at 3:57 am

    interesting and useful survey Drew, thank you for taking the the time to do it 🙂

    January 22, 2013 at 3:52 am

    that is good to know Pat–thank you—so even if I dont get accepted, at least going out there for three days wouldnt be a waste if Dr Allen was able to recommend a treatment plan.

    I’m really hoping to get accepted though.  My symptoms are not quite as “typical” as some with cidp, but my main symptoms are weakness, i have a slightly elevated LP, nerve biopsy shows inflammatory process, and an identified abnormal anti-body—all of these point toward immune disorder.  So my thoughts are whatever the
    “disorder” a whole new immune system from a sct should fix it???

    I figured it may take a little while with all the holidays, etc since i have sent in my info.

    I did have a message from Paula on thurs that Dr Burt had reviewed my info and had a few questions—–must mean he’s considering me at least, if he has ?s 🙂   I didn’t get the message until after they closed thurs—time difference.  then of course the weekend, and Paula’s off on monday–so it’s been killing me waiting until tomorrow–tues when hopefully i can talk to Paula and see what the questions were.

    I was surprised that you are feeling well enough to go back to work for a while during the process.  that is going to be my biggest hurdle, trying to maintain my small business while getting it done.  It is the main reason i have waited this long to apply, i kept hoping i could get treatment without having to be so far away.  In the end all i ended up doing was wasting 3 years on very conservative treatment that has done nothing for me.

    I see in your post that you got ivig while at northwestern to keep you from getting worse—that is good that they care enough to keep you from getting worse.

    I started getting worse in Oct—4 months after rituxin. Called and asked my dr if i should get a second rituxin treatment or at least some ivig, since we knew the ivig kept me stabile.  She told me that I should continue to let myself get weaker and decline so that when i go see the new Dr, he will see me in that condition!!!! is this not the most stupid thing anyone with cidp and knows anythng about it has ever heard???  keep in mind. i wont be seeing the new Dr until later this month, so this was 3 months ago. What is the point of getting worse when there is treatment to prevent it, or the point of declining, now theres that much more work my body will have to do to heal these damaged nerves when i do find a treatment that works.

    did Paula/northwestern take care of applying to your ins co for  the sct or did you have to do that yourself?


    January 21, 2013 at 12:33 am

    How long did it take for Northwestern to get back to you after you submitted your information Pat?  I got all of mine out on Dec 26th, am waiting to see if Im accepted.   Hoping to hear soon—i am doctorless at the moment and have not recieved any treatment for 7 months.

    I can feel my self getting weaker, the numbness that was only in my feet has crept up close to my knees, my thighs and around my knees are feeling shaky and weak.  The ivig did keep me from getting worse, but because i didnt get an increase in strength from it, the dr i had doesnt  want to continue it.  Im getting in with a new dr soon that hopefully has more knowledge about cidp.

    hoping to get in for the sct, and hoping my insurance company doesnt ruin it for me if i do get accepted.

    January 18, 2013 at 1:39 pm

    good luck Pat 🙂  So in two weeks will you start the chemo—and the 3 weeks inpatient?   I hope you continue to post after the sct. So many people get it done, post once or twice after then never again.     Hopefully this is because they are doing better and getting on with their life.

    January 18, 2013 at 1:32 pm

    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?

    January 15, 2013 at 3:51 am

    Larry, was the IVIG helping with the pain ? If so, maybe you could find another dr who could get you back on it.

    As for the mayo in MN, i went out there too.  In my opinion–they are good at diagnosing but not so good at treating.

    Have you considered applying for the sct–there was a person on there who was in significant pain and it helped with her pain.

    Don’t just accept the pain, nobody should have to suffer with that. If you can’t get in with a Dr soon, go to a hospital with a reputable neurologist on staff and plank yourself in the ER until they get a DR to help with the pain.      Lori

    January 11, 2013 at 11:15 pm

    I have applied for the sct and am currently waiting to see if I’ve been accepted. It said on the clinical trial page that you have to have failed two other treatments.  I don’t know how that works if you are currently doing a treatment that is working???   You can always just apply and see.

    as for others your age….. there are some younger people on here around your age—hopefully they will respond.  It has not been a very active site lately.

    There are also some cidp pages on face book, they might have some people your age.  There is a face book page cidp-sct where there is a lot of sct discussion you may find interesting.

    Best of luck to you, sorry you had to end up with this crappy disease at such a young age.  I get  upset at getting it in my 40’s, can’t imagine being younger and it taking more time from my life.   On the good note, you are very young and your nerves have greater capacity to heal.        Lori

    January 9, 2013 at 4:40 am

    that is great news Kelly, it’s been a long  journey for you both. I hope it goes good for her and she can remain treatment free 🙂


    December 27, 2012 at 8:37 pm

    Jay, I went out to the Rochester Mayo to get a second opinion to confirm my cidp diagnosis. It was nice because they schedule every test possible in 1 week and  I did leave there with a treatment plan.

    But if you are looking for ongoing treatment and a Dr to work with permanently, I did not find the Dr at Mayo to be helpful. After his weekly ivig plan for 16 weeks didn’t work, I called him for his opinion regarding  rituxin. — Even though I spent 10 days in MN, had every test possible to confirm cidp and my insurance company paid a lot of money to them—he would not give me any opinion over the phone regarding treatment unless I flew back out to MN to see him again.

    My advice would be if you are looking for a diagnosis or a one time consult then they are good. Unless you live close enough to one of the centers of excellency that you can drive for ongoing treatment—in that case it would be ideal if you find a Dr you like there.   Lori

    December 27, 2012 at 8:18 pm

    that is great news Patty 🙂  how long did your husband do the weekly ivig infusions?  what do you mean by high dose? was it a loading dose—-2 gm per kg? or higher?     That is great that he is able to ski again too!!!! i really miss skiing and am hoping to be back at it one day too.           it is always nice to hear success stories with this disease—-glad you posted 🙂

    December 27, 2012 at 8:11 pm

    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!!

    December 14, 2012 at 3:35 am

    I hope soon!!!

    The features removed from the board when it changed over have really shut down the communication and information that was available prior to the changes.

    December 14, 2012 at 3:23 am

    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

    December 3, 2012 at 2:15 am

    Larry–thanks for sharing your brothers experience. Yes I am able to function alone.  The cidp has affected the nerves in my calves and feet, causing walking and balance difficulty. I dont use anything to walk—but do not walk very fast anymore.

    I am awaiting a date for an emg/ncv to be done sometime this month. If the emg shows any improvement then I will stay with the rituxin and try another treatment. If not, I will apply for a sct. I have already spoke with Paula at northwestern, she has e-mailed me the paperwork

    looks  like your brother has been through a lot of treatment for his cidp–especially since only being diagnosed 6 months ago.   I dont think my dr has been as aggressive as some. If i dont get into northwestern I plan to look for a dr who will treat more aggressively.  My dr is so concerned over what might happen in 10-15 years on every treatment—she seems to forget that i am worried about right now, i dont care if i get cancer in 10 years from immunosuppressants if it gives me 10 more years of  walking.

    Patience is definitely needed with this disease—and I will be the first to admit, I dont have it.  My feet just wont do all the things my head and heart want them to and are not keeping up no matter how hard i push them 🙁

    I do have axonal damage which, you’re right, takes longer to heal.                 Lori



    November 23, 2012 at 9:11 pm

    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