Going to NW for a stem cell xplant evaluation

    • Anonymous
      February 27, 2011 at 10:05 pm

      I am headed up there the middle of March, with my appointments spanning 3 days.

      I hope I get accepted for the treatment since nothing else is working for me.
      Does anyone have any advice for me, or possibly any questions you want me to ask the transplant doctor?

    • Anonymous
      February 28, 2011 at 8:59 am

      [FONT=”Microsoft Sans Serif”]best of luck john–
      i had the stem cell treatment at NW and it worked for me. i hope you get in have the same success!

    • February 28, 2011 at 10:46 pm

      Hi John!
      That big first step may restore your health and my prayers are with you.
      I certainly hope you are accepted into the program.
      Please keep us updated.

    • Anonymous
      March 1, 2011 at 1:51 am

      Good luck John!
      I had it done too last June and it worked for me as it did for Alice and others.

      If you have any questions or need help, feel free to email or pm anytime.


    • Anonymous
      March 1, 2011 at 10:25 am


      I am very interested in the out come of your stem evaluation, and if in deed were accepted into the program and how the program worked for you.

      I was dx this past Oct with chronic CIDP, IVIg has not help, the only thing Prednisone has done is put weight on.

      I have been thinking about trying to get into this program, as of Jan 2011 NU was still recruiting participants for the program.

      I hope you were one of the program’s success stories!


    • Anonymous
      March 3, 2011 at 8:24 pm

      Thank you to all of you who replied. I appreciate the support!

      Speedy, I know how you feel. I have been on most cidp drugs over the last 15 years, and currently take the Rituximab infusions every 2 months. I had a great remission initially with rituximab, but after years of infusions it is not nearly as effective.

      I am remaining guardedly optomistic things will work out. I am basing the possibility of a positive outcome on the fact I did very well initially with the chemo (rituximab). Possibly the 3 different chemos and autologous sct I can at least get a couple of more quality years in.

      In a perfect world I would even get better and feel better, but Ill settle for the continued ability to use my hands and walk.

    • Anonymous
      March 3, 2011 at 11:46 pm

      I don’t know what else to say!
      Go forth and WIN fiercely!
      You are a pioneer AND a hero in my heart and soul.
      Do try and keep us all updated about it all? At times so much seems ‘mysterious’ in the processes? What’s happening to you…tests, treatments and all of that is of keen interest to many of us here…
      YOU WILL BEAT IT! I’m rooting for you as I have done for Alice and others…
      Prove your own faith in yourself right. Please! Hugs and hope and more!

    • Anonymous
      March 4, 2011 at 6:39 pm


      The message you have entered is too short. Please lengthen your message to at least 10 characters.

    • Anonymous
      March 5, 2011 at 11:05 am

      John, I am arriving in Chicago on March 8, leaving March 12, for my 6 mo. check-up. What is your itinerary? I’d love to get together if possible.


    • Anonymous
      March 12, 2011 at 5:53 pm

      Sorry Ana, just got on here and read your itinerary. Im going up there Tuesday the 15th through Sunday. Ill be visiting friends and family over the weekend.

      Wish we could have connected! Just missed each other by a couple of days.

      For everyone else I will give details of the process ad nauseum if you like.

    • March 12, 2011 at 7:02 pm

      would love to have the details posted : ) especially the criteria for getting accepted. Am not at that point yet–but definitely reading up on it and keeping it in the back of my mind in the event the ivig doesnt work. Best wishes to you and hope you are accepted into the program. Lori

    • Anonymous
      March 13, 2011 at 10:35 am

      No problem, John. Good luck to you! I hope you get in.


    • Anonymous
      March 13, 2011 at 12:09 pm

      John C,

      You have stated that you have been on most CIDP drugs and treatment for 15 years. I assume you’ve done the prednisone route. if you have, what was your high starting dose and how long were you on it?

      Also did you do plasmapharesis? if so how many times, how close together and have you ever done some of these treatments simultaneously?

      I take it the IVIG thing is not effective?

      I have been dealing w/ CIDP for 22 years. I have done just about everything. My last major relapse from 2001-2004 the IVIG on its own was not effective. 3 infusions per week for over a year. I just kept deteriorating. Once I jumped ship to a major medical facility and was admitted everything changed. I had multiple plasma exchange in conjunction with the prednisone 100mg/day, stopped the IVIG, had intravenous vitamins (C,D, B-1, B-^, B-12, all kinds of others) plus a 24 hour round the clock staff. I was given rounds at this teaching hospital where half dozen nuero students were being challenged to dx me each day and boy did they do the research! After about 2 weeks i was responding very well and was released and continued my road to recovery.

      This stem cell treatment is very new and cutting edge. I have studied it somewhat but I’m am a bit skeptical right now. With CIDP I rule NOTHING out. I studied in depth herbal medicine and nutritional aspects. Both of those have been very beneficial.

      I am currently experiencing my third relapse starting about sept 2010. Started directly with prednisone 60 mg/day. Absolutely hate the stuff. I am the poster child for side effects. Insomnia, mood swings, phycosis, weight gain, moon face, sweating, shaking, blah, blah. However, for me, it almost immediately began turning around my CIDP symptoms. I think everyone responds different to various treatments.

      Good luck with your approach. Stay strong. Be your own best advocate. I believe everyone with CIDP has a fighting chance to repel this process with the proper combination of determination, maximum medical treatment, first class doctors and staff, and foremost, faith in your God who knows your affliction and grants blessings and healing to those that believe and fight the good fight.

    • Anonymous
      March 23, 2011 at 10:30 pm

      There is no rock solid criteria for acceptance except: The neurologist and the stem cell transplant Dr. need to be sure as they can be you have cidp. My onset was unusual for cidp, but not impossible. You need to have taken the pred or ivig without any lasting improvement. Other than that you just have to be healthy enough to survive the xplant.

      The neurologist who looked like a young Steve Young from the SF 49rs fame said I had been on all the right meds. I told him prednisone-no improvement

      I told him ivig up to 2x a week with no improvement. Cellcept added with no improvement.

      I started rituxin and had an actual remission for a year or so, then slowly started to get worse.

      Thats the history I gave the Drs. your mileage will vary.

      I had to take a cervical mri due to the fact i had a discectomy. They had to make sure my problems werent related to spinal stenosis. they werent

      My emg study in dr Steve Youngs words “sucked”. He said it had the classic features of advanced cidp. My muscle atrophy in my hands and lack of deep tendon reflexes also helped the dx.

      So all in all

      I had an emg study……3 hours long,, yeah it hurt a bit but not too bad. I was told by the attending doing the test I shouldnt be able to walk. I love proving them wrong~!

      I had the cervical mri for aforementioned reasons

      I had a ct scan of my lungs due to the fact there was a mass found but was deemed benign a year ago, but they wanted to make sure.

      I had an appt with the transplant doctor whose first words were, “what we do here can kill you.” “I havent lost any so far and did hundreds of the stem cell transplants for other diseases.” I think only a few for cidp, but my odds are good. He was a no bs guy who took my history and answered my questions.

      I had to see a pulmonologist due to the spot on my lung, and I thought this would be a waste of time, but it wasnt. She dxd me with asthma I didnt even know I had. Worth the time for sure, and she said im one of many adults walking around with asthma and dont know it.

      The tests ended with a few vials of blood and some pee in a cup.

      After all that my wife and I decided we would relax Saturday and visit family and friends in the area until we got the call that the lady watching my 12 yo son at my home fell and got a concussion and almost a broken arm. So needless to say we felt we needed to get home.

      I slept for 2 days and nights straight when I returned home.

      Today I got my email telling me I was accepted and the letter to my insurance companies bcbs and medicare have been filed. Dr Burt seemed confident I would be covered. I hope he can deliver for me!

      Mongo, I was only on 40mg a day prednisone.

      Anyhow, thats it for now. I should mention we stayed at the Seneca Hotel which was within easy walking distance for my wife, but not so much me lol.

      They give a special rate to NW sct patients through a deal with NW. For under a hundred dollars a night we got a suite that was like a small apartment. Full kitchen, 1 and a half bathrooms, two queen beds, and a living/dining room that was huge. Looked to be a 47″ led in the living area and a 37 incher in the bedroom. I shopped around and trust me theres nowhere cheaper on the gold coast of chicago. You can see the lake from the street in front of the hotel.

    • Anonymous
      March 24, 2011 at 8:39 am

      good luck. prayers for a great outcome.
      keep us posted.

    • Anonymous
      March 24, 2011 at 11:57 am

      Hi, John C:

      Congrats! I was SCT #15, transplanted Sept. 16.

      I am very interested in your comment about having had a discectomy. Me too. C3-4 and 4-5. One or two on this forum are interested in documenting relationships between CIDP and past medical history, geography, immmunizations, etc., in the hopes of finding some common threads.

      I myself have noticed that a lot of us have had back problems. I wonder if the on-going inflammation from back problems somehow plays a role in eventually overwhelming the immune system and specifically targeting the myelin sheath cells. I don’t say that it is a necessary cause, and less that it is predictive….but it sure could be a contributing factor. In any event, there is at least a strong correlation between inflamed spinal nerves and CIDP.


    • Anonymous
      March 31, 2011 at 12:00 am

      [QUOTE]Hi, John C:

      Congrats! I was SCT #15, transplanted Sept. 16.

      I am very interested in your comment about having had a discectomy. Me too. C3-4 and 4-5. One or two on this forum are interested in documenting relationships between CIDP and past medical history, geography, immmunizations, etc., in the hopes of finding some common threads.

      I myself have noticed that a lot of us have had back problems. I wonder if the on-going inflammation from back problems somehow plays a role in eventually overwhelming the immune system and specifically targeting the myelin sheath cells. I don’t say that it is a necessary cause, and less that it is predictive….but it sure could be a contributing factor. In any event, there is at least a strong correlation between inflamed spinal nerves and CIDP. [/QUOTE]

      I will say this as it is stated in my medical record: I had a bone spur in my neck, and this was prior to any cidp symptoms.

      I went from a very healthy (for me) 185# down to165# due to the constant pain and muscle spasm between my shoulder blades. All the doctors I saw had pretty much told me theres nothing wrong with me via mri so they couldnt help. The pain remained constant over a year until i finally got so fed up i pulled straight up on my head and popped my neck. Instantly I felt the muscles that were contracted loosen their spasm. No pain after that until this past year when I had the discectomy done from another bone spur.

      At the same time I was having the intense pain between my shoulders I caught strep and took penecillin for it.

      I was also stressed out over a breakup with my gf of 5 yrs. and working 80 hour weeks, my record was 93 hours at work in a single week.

      Also just prior to symptoms of cidp I had an oral hep vaccine as a work condition. I only did it once, and heard it needed to be at least 3 of them for full immunization.

      You may want to educate yourself on tumor necrosis factor or tnf for short, if you havent already. If your body produces too much it can cause all the above symptoms. I believe that is where the cause and cure for this disease lies. Just my opinion.

      Hopefully my story helps!

      edited to say: I got an update email from NW yesterday saying my folder and the doctors drafts are ready to send to the insurance companies. I fully expect to be shot down the first time.

    • Anonymous
      March 31, 2011 at 8:11 am

      Hi John,

      Sending thoughts and prayers your way. I hope you receive good news from the insurance company.

      Take care,


    • Anonymous
      March 31, 2011 at 2:03 pm

      John, my insurance approved the procedure almost immediately…no initial denials. I was very pleasantly surprised and you may be too. I have Anthem BC/BS. Good luck.

      Interesting about TNF. As an “inflammation stimulator” it certainly fits in with my theory about the role of inflammation in the spinal area as a contributing factor to CIDP. I checked my lab results from my follow-up and did not see that they had tested for this.


    • Anonymous
      April 1, 2011 at 2:20 pm

      Very interesting! I, too, have many spine issues. Was a gymnast in HS and 22 yrs aerobics instructor. Rear-ended 2x with whiplash as a result in the first accident. Have fractured vertebra, bulging discs and degenerative discs. Hmmm…

    • Anonymous
      April 1, 2011 at 2:21 pm

      Congrats! will be keeping an eye on you for the sct; I, too, would consider that as an option. God bless! Hope BC/BS give you a quick positive reply!

    • Anonymous
      April 3, 2011 at 12:04 am

      Just let the docs deal with the ‘insurance devils’, they are far more experienced in it than are we! And then Go forth and fight fiecely!
      You as are others before you are an inspiration for us and likely our futures!
      Mostly? HOPE!
      I hope and more that you are as successful or more than Alice!
      Hugs etc!

    • Anonymous
      April 4, 2011 at 7:34 pm

      edited to say: I got an update email from NW yesterday saying my folder and the doctors drafts are ready to send to the insurance companies. I fully expect to be shot down the first time.

      so i am interested in the process. things seem to be working for me now but having a backup plan is always good. so once the doc’s file your paperwork with your insurance company they then say no…how many times do you have to file before they accept? then how long does it take to start the process?
      how long is the process/procedure? i am thinking about how long your wife and you have to stay in chicago.
      do you have to go back to get check ups? i am really curious about how they define things goinng well for someone. my neuro says that as long as i am getting stronger then that means i am getting better. i still doon’t have reflexes in my legs and arms but i am walking with sport aircasts to protect my ankles from rolling.
      just curious howlong the procedure takes and then how long you will see a result. also when are you starting it?

    • Anonymous
      April 4, 2011 at 10:43 pm

      I had the Stem Cell Transplant at NW in chicago done last June, so I can answer some of your questions.
      Everybody s case is different. In my case…. my insurance denied my request 3 times. They have someone that deals with insurances but mine wasnt responding to him, so I took matter on my own hands and I started calling the insurance. After almost 5 months and a lot of phone calls,faxes,emails… I got approved. Every insurance works differently. After the approval, in less than 2 weeks I was in chicago starting treatment. Then it takes about 2 1/2 months aprox there.
      You have to go back at 6 months and then at 1 year mark. Then once a year for 5 years total.

      Everybody respond differently to treatment. I had cidp for 14 yrs. Was taken prednisone,cellcept, plasmapheresis and ivig every 2 weeks. My cidp symptoms were put on remmission since the day of transplant. I have not had any symptoms or relapses since june. I did have other side effects ,but nothing too serious. As a matter of fact I may go back to work in a week or 2.
      You can read more about my case on my blog page
      [url]http://rossanascidp.blogspot.com/[/url] .

      This is my personal experience with SCT. Other people has responded differently. Overall I think most of us have responded pretty good to treatment.
      The first thing they tell you is that is not a cure since is still under research. To me, it has been my cure for my cidp.

      I hope this help you a little and if you have any question ,dont hesitate to ask.

      Take care,


    • Anonymous
      April 7, 2011 at 10:48 pm

      I got a call yesterday from the nurse at NW. She said my insurance company wants me to get more tests to rule out any possible underlying causes. I have had all the std tests and aids tests years ago, but they want them again.

      I know I dont have any stds, or hope thats the case or my wife will be hearing from my attorney!

      This to me is actuslly good news, because they want these tests. It seems to me once I jump through their hoops it will be harder for them to deny me, but then again nothing would surprise me.

      My local MD and NW’s doctors are working together to get all the tests run locally.

      If there is anything new Ill report back ๐Ÿ™‚

    • Anonymous
      April 8, 2011 at 1:12 pm

      They will test for AIDS and HIV once you are accepted for sct. In fact, they will take 20 vials of blood — yes, you read that correctly — and will test for everything you can possibly imagine. So maybe by doing the AIDS/HIV test now, NW will only take 19 vials of blood! I jokingly told people that I didn’t have my blood tested…I made a donation!

      Good luck. Keep us posted.


    • Anonymous
      April 12, 2011 at 6:14 pm

      I just got back from my local hospital where they took 15 vials of blood (the girl taking it said it was a record for her), gave me a muga heart test, and a pulmonary function test.

      I heard the phone ringing as I walked into my home from the hospital, and it was NW calling to tell me I had been approved for the SCT! Wooooooooooohoooo!!!!

      Yes, my lack of optimism paid off again! Not only did they not deny me they approved me in record time.

      So, realistically I took all those tests today for the Drs at NW, not the insurance company?? Why did they lie about it being an insurance thing? Who cares Im in!!!

      Thanks to everyone for the support and wishing me well! I will keep you all posted as I find out more.

    • Anonymous
      April 12, 2011 at 8:59 pm

      [FONT=”Microsoft Sans Serif”]a big congrats![/FONT]

    • Anonymous
      April 13, 2011 at 11:02 am


    • Anonymous
      April 13, 2011 at 1:02 pm

      John C!
      Wonderful news for you! So happy you were accepted. Please keep us all up to date with your journey as a lot of us may follow in your footsteps and we need to hear as much as possible about all the different aspects of a sct. God bless you as you go through this! ๐Ÿ˜€ ๐Ÿ™‚ YEA!!

    • Anonymous
      April 13, 2011 at 1:21 pm

      Congrats! Sounds like insurance decided not to pursue testing for other than CIDP, because the blood tests you described are part of the standard pre-SCT “drill” (no pun intended) ordered by Team Burt.

      There’s another CIDP fellow there at NW…I assume you know. I spoke by phone with him yesterday. I won’t give his name, without his authorization, but he is “enjoying” his post-testing week. Sounds like your inpatient stay will overlap.

      Good luck John C. Feel free to send me an email if you have questions about the procedure, what to expect, etc.


    • Anonymous
      April 13, 2011 at 7:06 pm

      Sharon, I didnt know about another forum member being up there now.

      Being approved still hasnt hit me yet. I talked to my case worker at the insurance company and she said that the insurance would pick up 100% and up to 10k travel, room, and board IF it were an approved sct facility, which it is. The problem being that sct is still in trial stages for cidp could cost me a lot. She did tell me she sent it down the line for approval of 100%.

      Im not complaining at all, but still hoping for the full ride. Just because I have cidp instead of MS treatment shouldnt cost me more, right? Thats not fair, and again the lack of public awareness of our disease is hurting us to an extent.

      I have said for years until someone famous gets cidp and goes to Washington like Michael J. Fox for parkinsons, or Christopher Reeves for spinal cord injury, we will be at a disadvantage. I am not wishing this disease on ANYBODY, famous or otherwise. Just stating what I see as factual.

      I know this: if this sct is an actual cure for me I will become a very active activist for all of us cidp patients. Ill fight for our rights to treatments that will help us without making us wait until we are too far gone for it to even matter.

      If I knew how bad this disease would get 10-12 years ago I would have definitely gone for a sct if it were available. The sct sounds like it is the future front line cure for this nasy disease. It would be depressing to add up the cost to me and my family in dollars, and the insurance companies since Ive gone through ivig 2x a week for years, plus all the other treatments like rituxan, cellcept etc. Not to mention saving the years of suffering and worry for my family and I.

      Sorry for venting, I just needed to let it out. ๐Ÿ™‚

      I will keep you all posted!

    • Anonymous
      April 13, 2011 at 7:50 pm

      [FONT=”Microsoft Sans Serif”]i’ll give you his name as i know he posts here, on my website and other places, looking for support and contacts. his name is robert and you can find him, among other places, on my site: [url]www.alicedicroce.com[/url]
      he has his own page and if you would like to help network and get the word out, i’d be happy to add you there as well… just let me know.

      anyway, i’m quite sure robert would love to be in touch. drop him an email.

      happy for you john, it gave me my life back!

    • Anonymous
      April 13, 2011 at 10:13 pm

      John I’m here now and start 1st Chemo round Monday and I have family here for a few days but feel free to check in if you want to chat.



      I’ll give you my number if you email me. Good luck to both of us.

    • April 14, 2011 at 11:25 am

      Sending my congratulations, John C.!

    • Anonymous
      April 29, 2011 at 9:49 pm

      Thank you all for the kindness and support!

      I will begin on the 31st of May with my pre-tests to the stem cell transplant. It is my understanding these tests are the basic make sure I can tolerate the chemo, and will take about a week of out patient. At the end of the week I will be given my mobilization dose of chemo, (Cyclophosphamide). This dose is given to increase my stem cell production as I understand it. I will have to stay overnight in the hospital during and shortly after this initial lower dose.

      After the mobilization dose of Cyclophosphamide I will get Neupogen injections to raise white cell count. Neupogen has side effects, pain in the bones and joints being the worst of the usual side effects.

      This is how I understand it so far, and if I have anything wrong I will correct it with the next update. Lots of info, travel arrangements, and some stuff I have never dealt with, like being away from my son for any length of time. I am sure he can handle it, its me I worry about ๐Ÿ™‚ Its all a bit overwhelming, but I have learned not to stress over the little stuff, and concentrate on the task at hand, which is to wake up one day not feeling like a cidp sufferer!

    • Anonymous
      April 30, 2011 at 10:54 am

      Hi, John C:

      You have a good understanding of the first phases. The tests last a week; then you are off (you can even go home!); soon after you return you will do the overnight chemo and then the neupogen – 6-7 days of self-injection. Then I think you have another week or so off and then it’s time for the big guns…the inpatient part.

      Feel free to PM me if you want additional information or to talk by telephone.


    • Anonymous
      May 31, 2011 at 11:14 pm

      I was in Chicago last week and found out today that I’ve been accepted into the program. I don’t have my schedule yet (have to get insurance cleared, etc), but I am in the program. I am sooooooooo relieved!!!! JohnC – congratulations and please keep us posted as to how you are doing.

      Woo Hoo!!!!!:D ๐Ÿ˜€ ๐Ÿ˜€ ๐Ÿ˜€

    • Anonymous
      June 1, 2011 at 1:22 am

      Congratulations Linda!!!
      Its the best thing I could ever have done. ! I know you ll do great too. Keep us all inform of your progress.


    • Anonymous
      June 1, 2011 at 10:02 am

      Wonderful, Linda. I am curious, though, to know what changed their minds….weren’t you there a couple of months ago?

      Please PM me if you would like to chat…I am now 8 1/2 months post SCT.

      Again, congrats.


    • Anonymous
      June 2, 2011 at 7:54 am


      I did send you a PM, but you are correct. I went first time in Jan and the neurologist wanted me to try some things and see how they went. I did and they didn’t, so I went back and got accepted this time!


    • Anonymous
      June 4, 2011 at 11:04 pm

      Just got back from a week of more tests. Most were redundant, but Dr. Burt and his team of specialists are truly doing all they can to ensure a good outcome for the patient.

      I met with Paula, Dr. Burt’s RN, and she was fantastic~! She talked with me for a good while, explaining the schedule and answering any questions she could for me. I signed the waiver of understanding the proceedure had risks. There were lots of forms asking the same questions I filled out. I also did some surveys relating to how disabled I am.

      The blood~!
      I dont know all the blood tests specifically, but they took 20 vials total this week to go with the 15 I gave initially.

      They had me take a sinus ct scan, and follow up with an infectious disease doctor to make sure I didnt have any infections or viruses of any kind. They checked on everything; and the infectious disease doctor told me all of the childhood diseases I had like chiken pox, measels etc. She was an awesome doctor, who spent a lot of time with me talking and answering any questions. Her name was Dr. Valentina Stosor, and she was very pretty to top it all off ๐Ÿ˜€

      They made me see thier dentist, and of course I had just seen my dentist for a cleaning, crown and xrays. They wanted to make sure I didnt have any infections in my gums. The xrays they gave were the old type that gagged me every time she stuck the cardboard in my mouth. I hate that~! She was very patient and said she felt bad about it gagging me. Had to be done I suppose. I did tell her that they did have more advanced xray machines where the patients dont feel anything at all. (yes I was a bit of a wise@, but after gagging 30 times I felt justified ๐Ÿ™‚

      I also had a quick ekg, and an ultrasound of my heart where they injected saline to test for leaks I suppose.

      Outside of the cidp they all agreed I was pretty healthy.

      Thats all I can remember for now, and if I recall anything else I will keep you all posted.

      My posterior is dragging, and its good to be home. Its a tough process that will get tougher, but I keep on looking at the big picture. I will do everything they throw at me, because the chance of waking up one day not being “sick” is worth it all.

      Much love to you all and thanks again for all the kindness you have all shown me. If posting my experience helps any of you or yours then I will have accomplished my goal.

      By the way I lived most of the first half my life in and around Chicago, and I can give some decent tips on the best ways to get around the city. I also know the best restaurants in the area in every price range etc. Just ask!

      Im home this week and will begin the mobilization chemo dose and stem cell harvest the following Monday. More to come.

    • Anonymous
      June 5, 2011 at 1:24 pm

      Hi, John C–

      Keep us posted on your progress. If you’re anything like me and others who have gone through this, the chemo will be very tolerable. They give you all kinds of goodies to make sure you don’t suffer too much. I didn’t and never lost my appetite! Though my hair was a different matter. But guys in the summer often shave it all off anyway.

      Good luck.


    • June 5, 2011 at 2:49 pm

      glad you are posting your sct process–very informative. Were they very particular at northwestern at your previous failed treatments. Im curious, if you are not improving but also not getting worse would they consider that a failed treatment. sounds like they really do a lot of testing to assure you are healthy!!–guess thats good since the sct is probably hard on the body. Lori

    • Anonymous
      June 6, 2011 at 12:39 pm


      IVIG hasnt stopped the progression, and I was on it for years. I did not respond to steroids either. Rituxan was the only “remission” I ever had. Unfortunately other than Rituxan just not being safe to take for 5 years or so, it also stopped working as effectively. I have noticed more loss in strength, increased numbness, and pain while on the rituxan.

      I feel this is my best shot because the Rituxan did help me greatly in the beginning, and I feel that this stem cell transplant takes chemo a step further making it more effective.

      Speaking with my assigned neurologist, Dr. Allen, he said my treatments were exactly what he would have done. I told him how I wished I would have found him years ago, so I wouldnt have had so much permanent damage. He just smiled.

      I suggest you contact Paula, Dr. Burts nurse at Northwestern. She will send anyone who requests a form to fill out to see if you are eligible.

      If I were to know 12 years ago what I know today, I would have jumped in the program at any cost. Obviously those who have the disease and long remission, plus little damage the sct would be a bit radical. Thats just my opinion.

      Anyone interested should contact Paula for the forms. She will email them to you. She can even send you a sample schedule of the whole process.

    • June 6, 2011 at 10:40 pm

      I am currently scheduled to go to mayo for a second opinion—next week, actually ๐Ÿ™‚ . 12 years is a long time for you to have had to deal with cidp—I’m happy you got in for the sct. I have not really had any aggressive treatment for my cidp yet and am hoping that is what will be accomplished at mayo. So as you said— it would probably be a bit radical for me to jump to sct right now without trying some other things first. Im thinking maybe more frequent ivig, plasma exchange or even some sort of chemo drug first, before going to northwest. thoughts are with you–hope it goes well ๐Ÿ™‚ Lori

    • Anonymous
      June 7, 2011 at 1:38 pm

      I would do the aggressive treatment for a short while to see if it did any good. If not, go for the SCT. I lost a lot of muscle and feeling in my body due to trying different things, and staying on certain treatments too long.

      Thats just my thinking, and my hindsight is pretty good.

    • June 8, 2011 at 9:42 am

      i agree–after reading here. I was diagnosed 2 years ago. Have been pretty patient with ivig , pred–which made me worse, and a conservative neurologist–who I really like, but she isnt being very aggressive. My plan is to get Dr. Dyck from mayo give some treatment recommendations. If nothing improves with his plan then YES—-contacting northwestern!!! By then my kids will be back in school and it will be easier.
      Does the Dr at northwestern feel you will regain the strength and feeling after the sct.How damaged are your nerves—are you walking? I wondered if there was a timeline on the nerves—if they have gone so long can they still regenerate ? I have read posts from others who have had sct and it seems they are regenerating nerves–even axonal damaged nerves that have been damaged for a while. Was interested on the drs opinion on that at NW—did they say how long was too long for nerves to heal?
      What about previous treatments–were they really strict on how many other things you have tried and failed? Age must also play into their decision? such an interesting procedure–i wish it was discussed more by all neurologists as a treatment option. Lori

    • Anonymous
      June 8, 2011 at 10:47 pm

      As far as regeneration of nerves goes: Dr. Allen (my assigned Neurologist) of NorthWestern said it all depends on how long your nerves have been damaged. The more recent your damage, the better your chances.

      They asked about IVIG and Prednisone specifically on the patient intake form. How long and how often. I think failing aggressive IVIG treatment will get you seen for an evaluation.

      They also had a space for additional treatments. You can get an intake form from them if you email NW. It lays out the requirements for the proceedure.

      I personally think Mayo and the Two Dycks are/were highly over rated. I am interested in hearing if the young Dyck does anything aggressive for you. I honestly believe the diagnosis from Mayo was important, but other than that I had a very uncomfortable time at Mayo with lots of off the wall tests from the old Dyck. The whole report from Mayo ended with something like “I the most godlike Neurologist in the world, agrees with your Drs. diagnosis and treatment of your cidp.” <---- joke ๐Ÿ™‚ but everything other than the godlike comment is true. I would not wait until you cant walk or type to speak up. If IVIG wont do the trick, and prednisone wont do it, then I would contact NW. Rituxan long term is dangerous, and if you dont respond to IVIG you likely wont respond to plasmapheresis. The latter is also dangerous due to staff infections. This is just my way of thinking Lori, and I am no doctor. If I could have stopped this disease at 2,3-5 years in????? Yeah Id do it in a heart beat.

    • June 9, 2011 at 6:12 pm

      OMG your post gave me a good laugh—-not that i thought it was funny that neither of the Dycks did a thing for you–just your way of posting it was hilarious!!! Too late for me to back out now–hotel reserved, plane tix bought and week off from work—hopefully they will have some useful suggestions. I hope all goes well at northwestern for you. What is your level of mobility right now ? my hands/arms are not affected, feet, ankles and calves are weak. I can walk unassisted but its tiring, no running,jumping,tiptoes or heals. no autonomic involvement at this time.

    • Anonymous
      June 10, 2011 at 8:12 am

      JohnC – got my schedule from Paula yesterday. I will be heading to Chicago on July 10th and start the pre-testing/etc on the 11th. So there will be some overlap time and I hope to meet you. Please keep us posted and I will do the same!

    • Anonymous
      June 10, 2011 at 8:54 am

      Linda, I am going to be in Chicago Aug 23-26 for my one year follow up evaluation. If you are interested in visitors, let me know.

      Congrats on being accepted.


    • Anonymous
      June 10, 2011 at 7:13 pm

      Sharon – I would love to see you!!! My family and friends think I’ve lost my mind because I am looking at the time away from my home and my office almost as a vacation. While I know it will no picnic, I am soooooooooooooooo ready to put this behind me, I can’t wait to get there. And now you’ve just added one more reason to look forward to my time in Chicago! See you there!!!!

    • Anonymous
      June 11, 2011 at 11:02 am


      Great! We’ll be in touch…don’t forget to call me if you want, in the meantime. I sent you my # via PM.


    • Anonymous
      June 11, 2011 at 12:31 pm

      [QUOTE=Lori222]OMG your post gave me a good laugh—-not that i thought it was funny that neither of the Dycks did a thing for you–just your way of posting it was hilarious!!! Too late for me to back out now–hotel reserved, plane tix bought and week off from work—hopefully they will have some useful suggestions. I hope all goes well at northwestern for you. What is your level of mobility right now ? my hands/arms are not affected, feet, ankles and calves are weak. I can walk unassisted but its tiring, no running,jumping,tiptoes or heals. no autonomic involvement at this time.

      ๐Ÿ˜‰ Its always good to laugh! ๐Ÿ˜€

    • Anonymous
      June 24, 2011 at 11:18 pm


      The last 2 weeks have been rough, but I am actually feeling much better today.

      Monday-Checked into the hospital for my overnight stay.
      Was given cytoxan along with pre meds, and after the chemo bag emptied I was flushed out with saline and lasix. Lasix makes you pee, and i peed gallons lol.

      The nurses and doctors were incredible! I was taken care of by some of the kindest, smartest, and most genuine caring people I had ever met.
      They went out of their way to ensure I was comfortsble and safe.

      I got discharged the following day and went to the hotel to rest.

      I was nauseated, running a fever, and sweating no matter how cool it was. Dr said it was from the neupagen. Lots of stomach and body pains, as well as some bone and joint pain also caused by the neupagen. I never vomited, but stayed pretty sick feeling until saturday night. So all in all very good so far!

      Wednesday had blood tests.
      Thursday was an off day for rest and fun looking around the city. P.S. get a CTA map and buy a CTA pass good for the trains and buses. A short cab ride is $10.

      More blood tests.

      7am began the first neupagen shots in the series. Took My meds. had to take the shots everyday for 6 days.

      Blood tests

      Blood work

      7am got temp catheter in my neck. sounds bad but quite it was painless.
      Went to the blood center for my stem cell harvest, which took around 3 hours and had the catheter removed.
      I felt drained and week, but managed to eat a good dinner.

      I was tired and weak until Saturday evening (now) and fly home in the afternoon tomorrow!!!!

    • Anonymous
      July 4, 2011 at 10:55 pm

      July 3rd my hair started coming out in handfuls from the cytoxan. I thought there was a chance to beat that side effect. I was wrong ๐Ÿ™‚

      I shaved my head, and its not all that bad. It just takes some getting used too. On the bright side my wife found a cool star shaped birth mark on the back of my head :rolleyes:

    • Anonymous
      July 5, 2011 at 8:59 pm

      John, bald is “in” for men during the summertime…especially with a fancy birthmark. You may be starting a fashion trend, to be imitated with tattooing.

      Keep up the good work…you’re almost there!

      SCT #15

    • Anonymous
      July 8, 2011 at 10:33 pm

      Thanks Sharon ๐Ÿ™‚

      How long will my inpatient stay actually be? They said 3 weeks, but I could go sooner if my white cell counts are good.

      #17 here ๐Ÿ˜€

    • Anonymous
      July 9, 2011 at 5:05 pm

      John, I went in on Sept. 9 and was discharged on the 26th. So a little less than 3 weeks. It was hell waiting to become neutropenic (it did not happen until AFTER the SCT) and then waiting for my white cell count to start rise once I was neutropenic. I wanted to jump out of a window…would have if they hadn’t been hermetically sealed. It was hell because by the second week, I couldn’t stand being in the hospital. While I never got nauseous from the chemo I developed a huge distaste for the hospital food, which really isn’t that bad. Also, they are always shoving an IV bag of something your way or a little paper cup containing a bunch of pills. But what a great feeling when you are finally discharged!

      Speaking of IV bags, they may give you serum and/or whole blood transfusions to elevate your platelets/red blood count. Also other goodies for potassium, manganese deficiencies.

      It was all worth it though. My improvement has been slow, but steady. I believe I can say that the CIDP is GONE! I have been off all meds since the end of my prednisone taper in October. My walking is so much better (wearing regular shoes most of the time, now) and hands and arms are practically symptom free.

      Good luck, and keep us posted.


    • Anonymous
      July 30, 2011 at 12:19 pm

      He received his stem cells on 7/21 and got out yesterday for a total stay of 17 days. Hope I will do as well ….

      Here’s to John and his complete recovery!!!!!!!!!!!!!!

    • Anonymous
      July 31, 2011 at 9:25 am

      Thanks Linda!

      I hope everything goes well for you and you are released as quickly as I.

      Sorry we never really got a chance to speak, but ask the nurses when in doubt. They have more than a couple tricks up their sleeves.

    • Anonymous
      August 1, 2011 at 7:40 pm

      Sorry for not posting the rest of the enchilada yet. I am super busy since getting home, but have not forgotten~!

      I actually can post specific counts on specific dates to give those current and future patients an idea of what to expect. I plan on a lengthy post.

    • Anonymous
      August 1, 2011 at 9:44 pm

      Can’t wait to read your coming post as here I am going through my turn … have met several people at various phases of the sct program here in Chicago. Last night, a group met on the roof of the Seneca (thanks to a suggestion by Bill L) and had a meet and great. Wished you could have been with us!!! Met folks with MS, Lupus, RA and other things besides CIDP but all here going through Dr. Burt’s sct program – awesome!

      I do have a question – I was told I would probably get out on a Friday, but will have to wait until the following Wed and an appt with Dr. Burt before being cleared to travel. Did you have to wait or were you released to travel quickly?

      Thanks and welcome home!!!!!!!!!!!!!!!

    • Anonymous
      August 9, 2011 at 7:13 pm

      If your counts are up you go home was what I was told over and over by Amy. My counts were up Thursday, and I left Friday before noon. I was on a plane at 2pm and home by 5pm.

    • Anonymous
      August 13, 2011 at 7:16 pm

      Would love an update – hope all is going well for you!!!!

      And, yes, I noticied what you mentioned! :p