In this situation, take the bull by the proverbial horns.

It is neither helpful nor necessary to contact heads of departments.

Review the Clinical Trial information here:

[url]http://clinicaltrials.gov/ct2/show/NCT00278629[/url]

Note it was last updated Aug 29, 2011.

Do Not get hung up on the criteria. Be familiar with these criteria and with your own situation and then……

Contact them at the contact info given on the web page. You’ll see a phone number: 312-908-0059.

Tell your story to whomever answers that phone.

[FONT=”Microsoft Sans Serif”]simply write to Paula Gozdziak ask to be evaluated…
alice[/FONT]

Gloria,

But I just had the sct and it is worth it. You don’t know until you try, so try!!!

Good luck,

Linda,
I would love to hear about what prompted you to have the SCT and how you responded to it. I am also considering it, but am worried about getting some horrible infection and not surviving. Would you be OK with telling/writing your story?
thanks,
Lisa

Lisa im not sure if Linda still checks this board or not. she is on the SCT facebook page, if she doesnt answer here you might have better luck catching up with her there. Her story–and many others are still here in the archives. Its just not as easy to find them with the new board/format as it was on the old board. If you just keep clicking back the pages and open the ones that discuss sct you will probably come to Linda’s story—good luck Lori

(Hi Lori – I still check in every few months to see how everyone is doing! )

Lisa, I didn’t meet the rigid criteria established by FDA for the CIDP stem cell tranpslant. But Dr Burt agreed and believed the root of my problems was CIDP, so he accepted me into the program “off study”. He will still use the results I’ve experienced, but it will be a different part of final research paper. I am so grateful he did this … and he’s done it for others as well. The first time I went for evaluation, I was sent home and was told what he wanted me to try. My neuro followed the recommendations and then I went back a second time and was accepted. I guess I was so ready to kick CIDP out of my body, it was almost easy to go through the program. I admit, in hindsight, some of it was trying. But I was so ready to feel better that I had an attitude of gratitude and hope and it kept me smiling all the way through. I was elated to be in the program. It’s been 9 months and I have not had another treatment of any kind. I was on weekly IVIG. And I was on 5 RXs at breakfast, 2 RXs at lunch, 4 RXs at dinner and 5 RXs at bedtime plus extra pain meds for the really difficult days. And despite all this, I was in pain 24/7. I couldn’t walk more than about 10-20 feet without aid. Now I take 1 RX (one you take for a year post sct) and walk all over the place. This past Friday, I went dancing for the first time in almost 3 years! And I even remembered how to dance and danced pretty solid for about 2 hours. By the time I got home, my feet were in screaming pain, but it was worth it! By the next day, the pain was gone. I always was very high energy, but had extreme fatigue prior to sct. Now I am working long days, being very physically active on weekends, and still do things several evenings a week (dinner w/friends, Bible study on Thurs). I don’t have all my old energy back, but I have a lot of energy. I try not to compare myself to where I was before I got sick, as many years have passed and I’m older and things wouldn’t be the same anyway. I also have a lot of nerve damage and not all of it will heal. Instead, I compare myself to where I was when I went to Chicago for the sct. And the difference is HUGE! And while I may never have full nerve healing, I am no longer under attack. I cannot begin to imagine where I would be this year if I had not done it last … I believe I would be living in assisted living (and that’s not living to me – not at this age).

There are several from this forum that went through the sct program and we now have a facebook page “CIDP and Stem Cell Transplant”. The purpose of the page is to give factual information and share indiviudal stories of those that have gone through this. The page is not to debate the issue, but to provide factual information. There are good links you can explore if you are wanting to connect to those that already went through this. There is also one for MS patients (Dr Burt’s used this process on 23 autoimmune diseases) called “HSCT and MS” and then one called “Stem Cell Warriors” that has people from all over the world. The idea of using one’s own stem cells to rescue the immune system is catching on. So those are some resources to explore.

Send me a pm if you want to talk to me personally. I hope you find the path that works for you.

Linda

LindaM: I was evaluated by Dr. Burt’s team about six weeks ago and did not meet the criteria because my NCV did not show active demyelination. Is that why you were originally rejected for the study? Thanks.

Fred

hi linda—good to hear from you again, Im glad you are doing well 🙂 Has anyone from the sct program ran into Yuehen ? I have been wondereing how he is doing, he hasnt been back on the board since he left for the sct. Lori

Fred, I had active demyelination but didn’t have much muscle impact and the neurologist on the team wasn’t certain I had cidp. So Dr Burt wanted me to go off the ivig and up the immuran to see if I maintained, got better or got worse. I got much worse and then went back for re-evaluation. The neuro I saw the first time still wasn’t convinced I met the FDA criteria, so was discouraging. But then Dr Burt caled me and told me he believed I did have it and told me he accepted me off study.

Linda M: Thanks. I think that I will just have to pursue another avenue — perhaps Rituxan.

Fred – so sorry you have to deal with the extra frustration along with this horrible disease … I wish you great success. And, if you do start to show the active demyelination, you might head back to Chicago. Sometimes “no” from them means “not now”.

Lori – thank you. It’s been quite the journey but worth it! We are not certain what happened with yuehan. He might be posting on fb under his real name and we just don’t realize it is yuehan. He was in at the same time as a friend of mine and I know he was pleased with his improvements before he left the hospital … but don’t know anything after that. I will check with Jenn to see if she’s heard anything. If I can find out anything, I will post here. If I can reach him, I will ask him to post here.

How are you doing?

Linda–yes that would be nice if you hear from yuehen, others from here have asked about him as well. I am doing okay–thanks for asking :). holding okay on the ivig but not as good as i hoped. Getting ready to start rituxin soon. My cidp is a little complicated due to the paraneoplastic antibody. both Dr Dyck (mayo) and my dr have no doubt that it is immune system related-but because this antibody could be a prelude to cancer they are making me do head to toe cancer screenings before the rituxon. i have just a upper GI left to complete which is next tues–so it looks like i will receive my first rituxin infusion on Thursday the 31st!!!
if you dont see any posts from me after that–let it be known that the stuff killed me–lol. Did you have rituxin before you got the cyclosporin during your sct? i was following a few other sct blogs and they had posted about getting rituxin. This is my final thing I am trying before applying for the sct. My youngest son just turned 16 and got his drivers license. that makes it easier for me to be gone for the time needed for the sct.

Fred—I am in the process of getting started on rituxin. If you end up going that route we can compare experiences with it. It would be nice to have someone to discuss it with. i will be using the 1000mg schedule which i am very happy about–its the dose used for rhem. arthritus . only 2 infusions of the 1000 evry 6 months for 3 rounds. my drs theory was to hit it hard with the 1000 so we would really know if it was doing anything or not—works for me. i have the slowly progressive type cidp and sometimes on the ivig i have a hard time determining if its doing anything or not. Lori

Lori – I’m so sorry you are not getting relief yet. Yes I started and ended with rituxin and had cytoxin and atg rabbit in between, so was only 2 days of rituxin. I hope this helps you … but if you do end up going for the sct, I will come and be with you for a part of it if you will let me. I pray you get relief and the rituxin works.

I wish you success with the rituxin also, Fred.

I will be visiting more often to see how you both do!!!!

thanks Linds 🙂 I would love for you to spend some time with me if I end up having SCT !!! Im hoping rituxin will do it for me, as it is SUPPOSE to work for antigens in the immune system and i do have an identified antigen–keeping my fingers crossed. How did you respond to the rituxin–I have been told if i am going to have any reaction to it it will most likely be at the first infusion. What is atg rabbit? I have checked in on the cidp/sct Fb page to see how everyone i know from the board who has had it is doing. It seems everyone who has had it done is doing well and very glad to have done it—that is great!!! Glad to hear from you–I wish this board would pick back up and be more like it used to be, a lot of people don’t use it as much now that it’s not as user friendly. Glad to hear you are back to dancing–i remember you saying how much you missed it when you werent able. Lori

linda– I keep meaning and forgetting to ask—did the sct take care of your schrogens as well as cidp? Lori

Lori, yes! Both the sjogren’s and cidp are in complete remission. Everyone I know/talked with/read about/etc that had sct for cidp is seeing improvements with one exception. You can go to the fb page “Help Jon Heal” to read his story, but he had initial good results, then got worse. He’s from New Zealand and he might go back for a 2nd sct. He has the anti-mag version and that might be a factor. When they started the trials on MS, they learned there is one variant that the sct doesn’t put into remission. Might be this is the variant for cidp. However, Jon posts (and will tell you if you ever meet him) that he still feels it was worth it as he did have a few months of relief and believes he would be dead now if he hadn’t done it. So don’t want to make it sound like a 100% success … but he’s the only one I know of out of 30+ that didn’t get positive results. I can’t remember what the atg rabbit targets??? I think t-cells, but seriously have forgotten. It’s surprised me how much of a “medical” brain dump I’ve done since getting home – really putting this stuff in my rear view mirror … 0f course it could also be either old age or chemo fog! I will post when I remember! LoL

I so hope the rituxan works for you – I didn’t get sick on it but did get headaches. I was bald by that time and wore a beannie to keep my head warm in the hospital. I just packed the beannie with ice packs and the headache would go away. The nurses were laughing at me because there were some serious drugs available to me but I choose ice packs. I’m just sick of meds … I hope you don’t have any problems with it – seems like most of the folks I know that did have nausea was from the cytoxin.

I will be following your story closely and praying for positive results.

sjogrens–guess i really messed up that spelling–lol. I dont think the “medical brain dump” is a bad thing Linda–maybe it’s your brains way of saying it’s over and done with—get on with your new improved self!! will definitely check out the fb stories. I have followed several of the blogs, Wendy’s, yours, Alice’s, Rosannas, I think one of the current sct patients was a former rituxin poster on here—don’t know if that’s good news for me just going into the rituxin though??? I think the anti-mag is hard to treat from what i have read on here, it is one of the ones rituxin is most used for due to the b-cell involvement. Lori

I have just written to request information & evaluation. I believe from the qualifications criteria i may qualify. can anyone tell me what the process is and the time involved. My challenge will be support in Chicago. I still walk most days but sometimes not well. Where do you stay? how much time actually in the hospital. what support is available day nurse etc? I have read the blogs & what it looks like I come up with is about a 2 month stay in Chicago??
The whole thing sounds scary. I have only been dealing with this disorder for about 7 months now but cannot stand it. I will pursue aggressively if accepted. If insurance does not cover does the hospital offer other options?

Pat – lots of questions and I will try to answer what I know.

The process starts when you send the application and medical records to NW. After they review, if they believe you might be a viable candidate, they will call you for an evaluation appointment. That will last three days (Dr. Burt – head of the program – on Wed along with blood work. Thur is usually the nerve conduction study/etc, then Fri you will meet with the neurologist). You usually know early the week following the evaluation if you are accepted. If you are, then NW will apply for the insurance – they did a great job with mine and it went through first time. Once financing is accepted, then they will schedule the sct. The time involved there depends. I work, so they tried to condense it all for me and I was in Chicago around 7 weeks. Another lady was off work and went for the pre-sct testing and harvesting of the stem cells, then went back for the high dose chemo/transplant part, so hers covered 3 months. So once in the program, you will do approx 2 weeks of pre-testing – the 1st week is standard and the 2nd is for any call backs on any issues specific to you (heart, allergies, whatever … most get a call back of some sort). Once cleared, you then go into the hospital for one night for “mobilization” of the stem cells – this is your first dose of chemo. Then, as an out patient, you give yourself neuprogin injections to help stimulate the stem cells to keep flooding the blood stream. Then a week later, you get “harvested” – your stem cells collected, much like plasma pheresis. Then you have a rest and recup time, then into the hospital for 2 1/2 – 3 weeks. This is when you get the high dose chemo. That is what kills/cures/puts into remission the autoimmune disease, but since it basically kills your immune system, your stem cells are given back to rescue your immune system. After that it is just a matter of waiting on counts to come up, then you can leave the hospital and go home.

There are several options for staying in Chicago. You can ask Paula (Dr Burt’s nurse) about them. There is a “Home Away from Home” program that is a charitable organization that will fund 2 nights/year in a hotel near the hospital for anyone undergoing any type of transplant. I used them for my stay during my 1st evaluation and it was a very, very nice hotel. There is also the Worster House which is student housing. You can apply for free housing there. It is not fancy (think back to a dorm atmosphere) but has all the essentials you need. I stayed there for my 2nd evaluation. Also NW has negotiated “medical” rates with some of the nice hotels/suites in the area. I stayed at one (now gone private) when I was in Chicago for the long haul. I had trouble walking due to pain, so used a wheelchair to get around. Everything is really close and within walking distance for normal folks! There are options there also and you can rent a scooter or use taxis as they are pretty cheap.

You can get support while in Chicago – Paula can also help you with options. While in the hospital, the only help I needed was with laundry. I did have someone with me the entire time, but it wasn’t really necessary.

If insurance doesn’t cover it, the cost is about $125k. Most I know that had to self pay, did have insurance pay some (about half). But I don’t know much about that as my insurance did pay. One friend who did this a month after me was self pay. She and her husband are organizing fund raisers to make it more accesible to those that cannot afford self pay. One man, sold his house and all his belongings and moved his family into his in-laws to pay for his wife’s sct (she had MS). His reasoning was that he can always get another house … but his wife is irreplacable. There are also fund raising internet sites that can assist.

But first things first … I wish you luck with this. If you want to talk to me directly, friend me on fb (CIDP and Stem Cell Transplant – Linda Martin) and we’ll exchange information. I don’t know if this site has the pm feature anymore – I cannot seem to locate the mail box I used to have here? Anyway, folks helped me, so I’m ready to pay it forward!

Thanks Linda – the information is quite valuable. I have recieved some information from Paula at NW that I will review with my local Neuro next week. I am still working & the IVIG gives me about 9-10 decent days between the bi weekly treatments thus my dilema of decision making. Can I /should I go on like this where I get no better & possibly worse or take the plunge. No gaurantees that my current job would still be there when I was able to return. The insurance should be a doable thing since they have been covering about $25k/month in IVIG infusions. If not, it would put a dent in the retirement fund but then I could keep working another 10 yrs ! I don’t FB much as too many inquiries-comments-well wishes, etc about things I like to keep private but my e-mail is PJMDBM@aol.com. THX Pat

Pat, I sent you an email.

Lori222: I have looked into Rituxan and have a lot of concerns. My local neurologist is opposed — he thinks that the downsides are too extreme. I went to see Dr. Latof, at Cornell Weill in NYC, to go over my entire set of records and test results. He was quite sure that I have CIDP — he said that, in his clinical experience, about 50% of long-term CIDP patients end up showing no demyelenation, as the healing from the IVIg over time allows some recovery, which is always in balance with the ongoing destruction. He told me that his team has done stem cell transplants, cyclophosphamide, Rituxan, and just about everything else available. He thinks none of them routinely work, although they do occasionally have some benefit in some cases. He thought that the successes at Northwestern are most likely a result of careful selection of candidates — an entirely legitimate approach for a clinical trial. He thought that Rituxan was too dangerous, with long term weakness of the immune system and possible cancer in the future. So, I certainly don’t mean to discourage you, and I am still thinking about it, but for the time being I think I will hold off. Good luck, and I would be very interested in how it works out.

Fred

hi Fred—i completely understand where you are coming from–each of us has to weigh the pros and cons of each available treatment for ourselves. my Dr too, had a hard time agreeing to try the rituxin for me at first. I just wasnt getting significantly better on the ivig, and was ready to try something more. i will post my rituxin experience on a new thread so it doessnt get confusing for people since this one is for sct info. good luck in whichever treatment you decide. Lori

Well – Northwestern recieved my records and invited me up in early September for the evaluation. Hoping and praying until then. Pointers & advice on the visit, logistics, lodging, care while there, etc welcome. Excitied but scared.

Pat, I will be there for my one year follow up Sept 5-8. What are your dates? It would be great to meet you in person. Good luck and congratulations!

hey Linda – Sept 5-7 unless something opens up earlier. That was 1st available. Pat

congratulations Pat on your acceptance to Northwestern. What perfect timing that you and Linda will be there at the same time!!!

Pat – that is so cool. I do hope you can get in earlier, but if not, I look forward to meeting you in person!

Fred –

I was in horrible shape – with one of the worst most aggressive cases of CIDP they had seen/ (sorry the “period” button on my laptop is broken so I will end each sentence with a “/”) Alice and Linda can attest to this/ Dr Burt called it “malignant” CIDP/ In the space of 4 months I went from fully healthy to crippled/ I was a mess/ I did not qualify under the strict criterion for the SCT – but Dr Burt took me on anyway/ Today I have recovered 99% of my function back/ I have some pain which I think was caused by the chemo and that limits how much walking I can do – but from a function standpoint – I have everything I had before except I can’t spread my toes as much as I used to/ That’s it / If I weren’t reminded every time I walk too far – it would be as though CIDP never happened/ I am convinced that had I not had the SCT – I would not be alive today/ Nothing I tried had any impact/ Towards the end I was getting IV-IG twice a week just to hang on until SCT/ SCT was like a miracle/ If it were not for Alice and Sophie – “Exhibit A” I used to call her – I would not have known about and certainly not pursued SCT / and it all would have been over for me/ I would not get too hung up on what your doctor is telling you/ I saw doctors at Stanford UCSF and even Mayo – and not one had any real knowledge of SCT and all advised against it out of doctor conservatism born from lack of knowledge (they thought it was a full on bone marrow transplant) This was the only program that offered anything other than palliative care – Iam back to my regular active life – its been 2 and half years – and I am cured! / Thank God for Doctor Burt / Northwestern and the love and support of Alice and Sophie !

Jim – I’d love to Chat. pjmdbm@aol.com

Pat

It’s been 11 months since my stem cell transplant and the improvement is nothing short of a miracle. I am working full time with plenty of energy left to enjoy my life. No meds and no treatments! Reduced pain – but very manageable. I am dancing 1-2 times/week, going out with friends, in a small weekly Bible study group, gardening and living my life full again.

I am exercising twice/day Mondays through Fridays and take the weekends off … I still have challenges (balance and numbness) but those are improving and I know the healing can continue for several years, so it just doesn’t matter. If I don’t improve anymore, it was so worth doing the sct. I got back last night from my nephew’s wedding in the Sequoia Mountains and did just fine traversing the rough terrain and ups and downs of being in the mountains. I didn’t need my cane for balance – I had to take it slow, but I did great – Praise to God and thanks to Dr. Burt and team!!!!

Recently I’ve been noticing something going on with my lower legs/ankles and found it puzzling. It took me awhile to figure out exactly what I was feeling and it dawned on me! I was FEELING again! What an odd sensation and it does come with some pain and twinges, but I’m FEELING again! This gives me hope that I might actually regain sensation in my feet in the future. Another little improvement is that I can walk barefoot again! I know that is a little thing, but it really is a BIG thing in my healing. It’s been over 10 years since I’ve been able to walk without shoes … and it took me a few weeks to even notice that I was doing it … LoL! What a hoot!

I encourage everyone with an autoimmune disease that is not under control to try for the Northwestern Adult Stem Cell Transplant clinical trial. I know it looks daunting and scary – but my life was daunting and scary and I wasn’t ready to give into the idea this was it for the rest of my days. I could do it if necessary, but until I tried all I felt God leading me to try, I wasn’t ready to accept CIDP as my future. For those that tried for the sct and did not qualify, I am so sorry and pray there is a solution for your improvement. For those that have not tried and are scared to try, I would like to encourage you to try for it – the chemo/process was less frightening to me than living the rest of my life with CIDP.

I am grateful to Alice, Sophie and Jim for allowing me to follow their journey up close and personal – it made the entire process less frightening!

Good luck to you, Pat, as you pursue your health.

If your bone marrow is attacked by a disease such as manifold myeloma, it can no longer create normal blood cells. In a stem cell transplant, fit stem cells are placed in your body during an IV to assist your bone core start to work exact. When the stem cells come from your own blood or bone marrow, it is called an antilogous transplant.

I have applied to the stem cells transplant. Will see if I am a candidate.

If you really like more information, there are some really good groups on Facebook. If you worry about privacy you can create a second acct to join.

Also the livingwithcidp.org is a better more lively forum if you prefer forum.

This site is pretty sadly dead these days.

I am desperate to do stem cells transplant because all my damages are axonal and permanent. I can’t afford to deteriorate any further. But I was told they only take classic CIDP patients.

Time for success stories to be posted.

For more recent HSCT related discussions, please see:
https://forum.gbs-cidp.org/topic/sct
https://forum.gbs-cidp.org/topic/problems-with-ivig
Sometimes topics get buried under other topic threads here. Doing a “search the forums” on keywords can bring them out in the open.

I apolgize beforehand for busting in on a thread like this. I have searched everywhere and even tried to contact my BC/BS provider (as I have had insurance with them for 30 years…and could not get one iiota of simply ‘what if’ detail from them) for help. The ‘story’ is as follows: I have a dear friend from Eastern Europe who moved to America a couple of years ago. Due to difficult work circumstances he has been unable to afford insurance (he now understands the necessity of such despite his limited income). As fate would have it he had to check into the local emergency room (and was ultimately admitted to the local hospital) on Christmas Day 2010 and was eventually diagnosed with ITP (Idiomatic thrombocytopenic purpura – which is basically an unknown condition wherein one’s immune system attacks/destroys one’s platelets). Normal platelet levels (I believe) run about 120,000 to 150,000. His were 1000 upon entrance into the hospital (he was bleeding from eyes, through skin, in mouth, in urine, etc)…and subsequently he was administered a 140units (infusion/bag) of Privigen (10/gm per 100ml)…which when the dust settled cost $44,000.00. He also had a number of xrays/test and spent 4 days in the hospital at a charge of $1185/day.

I was able to help him with information about usual and customary (like BC/BS – Blue Cross/Blue Shield) insurance allowances for the hospital room. For instance, when my wife was in the hospital some time ago…they charged about $1100/day for her hospital stay per day…but BC/BS only allowed about $300/day and the bill was considered paid in full. I am hoping that someone might be willing to share with me some kind of similar feedback with regard to how thier insurance (hopefully something like BC/BS) handled the charges from the hospital for Privigen infusion. I don’t think anyone is privy to how these behind the scenes ‘allowances’ are derived. But for instance, when I had achilles tendon surgery last year…the doctor charged over $10,000.00 for the actual surgery and again BC/BS only allowed him payment of about $2600.00. Again the bill was considered “Paid in Full”. I’ve got to believe that there are similar situations or ‘allowances’ with regard to the payment for Privigen through powerhouse insurance providers like BC/BS.

I am requesting this information so that my friend can have at least some sense of usual and customary insurance related/established allowances with which to barter with the hospital. If anyone has information wherein they were administered a similar transfusion of Privigen…and were charged a similar amount (HCPCS billing code for Privigen is J1459 ($275 per unit…140 units = $38500.00)…and then their insurance provider paid fractions of this cost (say 20-35%) and the bill was considerd “Paid in Full” and would share this detail with me…it would be GREATLY appreciated.

My friend’s life was saved with this Privigen protocol and he wants to honor payment. However, he is simply a waitor in a restaurant…and even sends portions of what little money he makes home to his parents in Romania…and will never be able the pay his hospital bill of $62,000.00+. He would like (to offer/negotiate) to pay whatever is usual and customary (like possibly BC/BS would do) if at all possible. Again, any detail and/or helpful information that anyone can share will be very GREATLY appreciated.

Sincerely,

Bobby Griffith

Good luck Rossana! You are a brave woman along with all of the other pioneers on here that have gone this route. Makes me proud to be a Chicagoan that NW is helping CIDP’ers!

Good Luck to You!!!:)

Rossana,

Wishing you the best of luck and a wonderful healing with the new treatment! I’ll be following your progress with interest. Thanks for sharing with us.

Best of luck to you. I have been through an unrelated transplant as a result of an acute leukemia diagnosis. Glad to give any advice or answer questions. My assumption is that this is an autologous transplant…using your own stem cells?

Warmest regards,
Ed Thorp

Just know that my heart and prayers and HOPEs are all with you thru the duration! Sooo brave and true! Is all I can say? Also Lucky! As When I’d checked out the trials? I missed the mark due to a bunch of other problems!
PLEASE keep us all up to date about the WHOLE THING?
Literally, we are the ‘rubes’ out in the country on this stuff. Knowing about IT and how it all happens? Is added knowledge.
Crossing my legs and fingers for you? That’s the best this body can do!
Hope and good things always!

Sorry you have to experience the ever changing midwest Spring while doing your chemo:( My parents have a place in Daytona Beach and I know I wish I was there now!
But welcome to the north and I hope you are getting some results. Living here has given me a great chance to see the docs at NW and they are leading the battle against auto-immune illnesses!! Stay strong and I hope you see results sooner than later!!

I just read your blog and saw you have Dr. Burt – he is the leading man with all this. I still have an article about him and his procedure from Sunday Oct 12, 2003. At this time, he had done 80 stem cell transplants (more than anyone else in the world) with ‘dramatic results’.
YOU ARE IN GOOD HANDS!!

Good Luck with your journey. I only wish that I could be there taking the same needles in my arms with you.

I hope all goes well and you get a 100 per cent recovery !!!!

Rosanna – Hope you are doing well with the SCT. 14 years is a very long time to have been afflicted with CIDP. My son had CIDP for 1.5 years when he had his SCT in Chicago. His symptoms got worse quickly and in pain all the time. SCT was his only option. He is great today – his feet are still numb but he can walk!! It is not overnight and everything you are going through is worth the gains you will make. Good luck with it – my son has a carepage that I wrote that was a pretty good chronology of what took place during the treatment time in Chicago. If you are interested, I will send you the link.
Maria

Rossana – it is a great blog and so wonderful of you to share it with those of us who wonder and await this procedure.
Can you give some detail as to who is considered a candidate and who is not? Do the docs at NW have a criteria/checklist? I was told 5 years ago that since IVIG has worked, that would be my course of action. This was by Dr. Heller who has since quit private business and I believe is working under Dr. Burt still.
But as I hit my 100th treatment, there is no doubt the ole veins are wearing out:eek:
Stay strong and I hope you had a chance to peek at the sun today!! This is why I love the midwest…all those miserable days are forgotten with the gorgeous temps we saw today 😀

Lots of prayers, hugs, and positive vibes heading your way!!!:D

Now remember, with the sunshine today, we should have a nice cold breeze followed by hail if the weather holds;)

Iam sending prayers, positive thoughts and an abundance of good will your way. This is wonderful to hear and I am sure the outcome will be a new life for you.
I do hope you keep us posted when you can and I thank you for sharing the blog. Your courage and bravery are contagious and lot of others will be inspired along the way.

Rossana,

Sending you prayers, positive thoughts and hugs!

I am sure there are a lot of people interested in this story. And, a few of you want to know if you qualify.

Although the Northwestern University Clinical Trial Data is available on-line you may call this number for info: 312-503-1435. Don’t rule yourself out, let the clinical trial people do that.

I called them…..

Good luck to you all, particularly to you Rossana.

Badmommy,

Who have you been seeing at NW? I have seen a couple of neuros and one rheumatologist, but would like a better neuro for my situation. The neuro they set me up with was a headache specialist, not peripheral neuropathy.

So I hold no resentment in that aspect. Just happiness for you all!
I only have respect for you brave folks… You’re not in Outer Space-YOU are IN Inner Space!
All I can say is? KNOCK ‘EM DEAD! [All the bad parts of the immune system, that is. ] It’s not like we could just replace a circuit-board, you know?
We ARE human! Delightfully complex and puzzling animals!
Go fight the pain demons and do it WELL! Beat them, Please!!!! Hugs plus! & to all also?

Thank you Rossana!

I had asked to see Dr. Soffit per Alice’s recommendation and they set me up with a different dr. I am going to try again.

Good luck!

Does This Work For Gbs?

Tina,
If you have/had a true case of GBS, then no, this treatment would not work for you. The “C” in CIDP stands for chronic, meaning the bad antibodies are constantly attacking the nerves. Treatments such as IVIG, solumedrol & PE will tempoarily halt the progrssion of the disease, but if left untreated, they will continue to do damage. This treatment is designed to stop the progression of CIDP, not GBS. GBS should stop on its own…
Pam

Rossana,

I’ve been following your blog. I’m so glad you are posting there to let us know what is going on.

I hope your infusion went well today and that every day goes as good as it can.

Best of all wishes to you.

Dear Rossana, 14 years, 14 years!!!!!!!!!!!!!!!!! So sorry! I had to read it many times. You make me feel better knowing that. SCT It couldn’t happen to a better person. Best of luck & get well!
Love & gentle hugs, smitty

[QUOTE=lmfan]T
I’m excited. Its 2 weeks away.
[/QUOTE]

I bet you are getting excited!!!

I am not sure if you posted before, but what is your physical condition like presently? W/C bound, walkers?, etc?

best of luck to you with this!!!

Rossana,

What are the symptoms of vasculitis?

[QUOTE=lmfan]djunk,
right now Im doing pretty good. I just had a relapse in january, really bad one. I started getting weak slowly around Christmas, right after new year I went in for plasmapheresis. By then ,no reflexes and almost paralized. Plus I develop what they called vasculatis, which is painful. It s the 3rd time that i get that with a relapse. It goes away and I get my strenght back after 4 or 5 cycles of pheresis.
Other relapses come without warning. I just feel tired and when I wake up I cant move from my neck down.
Most of the time I can walk slow and I work .I cant lift heavy stuff, I know my limitations. I do have everything at home W/C, walker, cane.
I lose my balance a lot, but over the years I learned how to walk in zig zag…lol to avoid falling.
Everybody wonders why I cant walk in straight line…lol:D
I did bring my cane just in case. The pheresis helps me a lot and I just had it done, so I feel lucky.

thank you.[/QUOTE]
LOL, I can’t walk in straight line either 😀
Isn’t it weird the way it suddenly happens when you wake up in the morning and a portion of you is paralyzed that wasn’t before you went to sleep??!!

How many times have you had phresis over years (just approx) and what type of catheter did you or do you have in for that? Where is it located? That is next for me, so I like to hear different experiences. I have one month to improve in (I am not paralyzed anywhere @ the moment). Then I will be admitted for the plasmaphresis.

This must be so exciting to you after all these years. I hope everything goes better than planned and you fly through it!!! When/where is it scheduled for now?
Hope to hear back from you….thank you for sharing…
jdunk

[QUOTE=jessicah]Rossana,

What are the symptoms of vasculitis?[/QUOTE]

There are many, many different symtpoms of vasculitis & it also depends on if it is systemic or localized vasculitis.

The best description would be to do a quick Google search and there you can see pictures of the various kinds and symptoms listed.

It really varies a lot depending on where and what systems are affected. If it is [B]localized[/B] the tissue gets bluish, (like fingers, toes) purple and looks as if it is dying (it is). If systemic the pain is usually incredible and not much is able to be seem (if it’s affecting lungs for example).

Google is the best bet for clarity though.

Thanks jdunk.

[QUOTE=jessicah]Thanks jdunk.[/QUOTE]

You’re welcome….that should make things much clearer!

Thanks Rossana. I got a weird rash a few months ago that was all over and my doctor had no idea what it was. It was large spots and pin prickly spots all mixed together that were painful when I touched them, like it felt like I was touching a nerve. I thought maybe it was shingles, but those go in a concentrated band. It went away after a week, but I have had issues with it twice before. I have a history of vascular migraines, and a family history of strokes and DVTs, so I just wondered about vasculitis.

I hope things are going well for you. I have been reading up on SCT’s to see if they are used in other autoimmune diseases. I have one, but have not been diagnosed yet, other than mild GBS. I think it started out as this, but has now morphed into something else. Please be careful. It sounds like there are serious potential side effects with the SCT’s and it is a really serious procedure. You are a trooper and I wish you the best of luck!