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Hi Jen & Rick,
So happy to see your April 2015 update...sure hope the good news is continuing & hope you are still doing GREAT.
Merry Christmas & all the best in 2016!!
Kim & Joe (Mayo friends)
Kim & Joe
Waterford, MI USA - Tuesday, December 22, 2015 10:03 AM CST

I posted on here in January of 2013. I am back today as an advocate for the Stem Cell Transplant. I had my transplant in Chicago on March 5, 2014. Tomorrow is my 9 month post transplant birthday and I can happily say that I have my life back. This was the best decision I have ever made and thank you for sharing your story.
Stacey Dematos <stadem06@yahoo.com>
Buda, TX USA - Thursday, December 4, 2014 3:16 PM CST

I am so glad to see your success. I have 1 question about the transplant. I have had very aggressive CIDP for 14 years. IVIG slows it barely, but if I don't do IVIG every 4 weeks the CIDP takes over even more. I am literally in the hospital for 7 days each month getting IVIG(my body responds so horrible I must be admitted each month)and have been doing that for 13 years. I have had 176 rounds of 5 day dose of IVIG. Even with all that, I am I a motorized wheelchair, on oxygen, can't feel or control my legs, fingers, hands, and mid fore arms. I also have a neurological disease called CMT-it doesn't effect anything above my knees or wrists even at its worst. Because I have a second disease that causes neuropathy, I do not and will never qualify for any CIDP clinical trial. My question to you is do you know of anyone that Northwestern has treated with the Stem Cell Transplant outside the actual clinical trial?
Susan Kiechel <gogimpgo@hotmail.com>
Charlotte, NC USA - Friday, August 1, 2014 2:57 AM CDT

So happy for you, you give me hope. I just started ivig if this does not go well it is good to know there may be something else out there.
Have a good life
Gary
Gary <gtburns@comcast.net>
Lebanon, NJ US - Wednesday, February 12, 2014 7:28 PM CST

Hi Jen,

I just wanted to say I'm so glad you are still doing well. I had my SCT in Nov. 2012 and your story is partly responsible for my decision to do that. I hope in some small way that I can pay it forward to others also. I had my story on the Neuropathy Association's website and in IG Living. Trying to spread the word to as many as possible.
Mary B. <Mashrub40@yahoo.com>
Plover , Wi USA - Wednesday, January 15, 2014 10:53 PM CST

Hi Jen & Rick,
So happy to see your June update. We will contact you at the e-mail listed.
Kim & Joe
Waterford , MI USA - Monday, November 25, 2013 9:31 AM CST

I have anti-mag neurophaty a variant of CIDP. I am looking for a Physical Therapist that knows how to treat this condition.
nancy long <shopkid61@aol.com>
chattanooga, tn usa - Friday, October 11, 2013 6:16 PM CDT

i am from egypt , diagnosed from cidp from 1-9-2011
pls i need yr tel or mail cause i want to make transplant sc.
moamen.atteia <moamen.atteia@gmail.com>
alexandria, egypt - Saturday, July 6, 2013 5:25 AM CDT

Hi Kim and Joe. We have tried so very hard to remember your last names and we have been unable to locate your e-mail address. We would love to speak with you so please contact us via our e-mail (rjosman@sbcglobal.net). Hope to hear from you soon. Rick and Jen
Rick <rjosman@sbcglobal.net>
- Wednesday, June 12, 2013 2:42 PM CDT

Hi Jen & Rick,
No news is good news so I sure hope ALL is going great!!
Kim & Joe (Mayo Friends)
Kim & Joe
Waterford, MI USA - Tuesday, May 14, 2013 2:07 PM CDT

I was just recently diagnosed with CIDP on January 4, after numerous tests and a spinal tap. I start my first 3 rounds of IVIG tomorrow and once a month for 6 months there after. I stumbled upon your page after doing tons of research and seeing someone else mention the SCT. Im hoping the IVIG will be enough, but its nice to know that there may be other options if it doesnt work. You definitely give us all hope who have found themselves stricken with this frustrating disease. I am able to walk without assistance and I am thankful for that, but I have everyone asking me if I hurt myself or if I am ok and although Im open to talking about my problem, I would much prefer to be back to normal. I want to get back on my bicycle, I want to be able to run again, and as silly as it sounds, I LONG to wear flip flops again.
Stacey D. <stadem06@yahoo.com>
Buda, TX USA - Tuesday, January 22, 2013 2:12 PM CST

Hi mom. I haven't wrote in this in almost 8 years. I just wanted to say how strong you are. You truly are my hero. I am looking forward to all the time we still have together. YOU BEAT IT! Love you so so so much.
Meghan Osman
Plainfield, IL USA - Friday, December 28, 2012 1:52 AM CST

Jen you and your family are a insperation by showing great courage and fortatude. Wishing you continued good health
Gerald Campeau <campeauv@yahoo.com>
Sakon NAKHON, s n THAILAND - Tuesday, December 25, 2012 10:14 AM CST

All things are possible with God.
Kerry Curran <kerryrcurran@yahoo.com>
Woonsocket, RI USA - Wednesday, December 19, 2012 11:35 AM CST

Hi Jennifer, Found your website today & I am so glad to read about your journey w/CIDP. I was diagnosed in Dec. 2011, started IVIg tx w/cellcept in Jan 2012. We are just 4 mo into tx, no improvement yet. We are going to Mayo in June, hopeful to get positive confirmation or answers to what is really going on. I have had lower body weakness, getting progressively worse. Getting harder to walk, get up from sitting, fell a few times, now using wheelchair & walker. Praying for answers, hopeful that SCT will be available @ some point..What a blessing to read your story of recovery!! Thank you so much, you are a great inspiration for those of us on this journey. God Bless You & your family for sharing w/the world!! Kathy Wiese, Middleville, Mi.
Kathleen Wiese <kmw.2000@yahoo.com>
Middleville, Mi US - Tuesday, May 8, 2012 6:57 PM CDT

Thank you for the information you provide and especially for the courage to undertake your groundbreaking journey. All of us suffering from CIDP have hope because of you.
Patrick Wilson <cokeclassic68@yahoo.com>
Goose Creek, SC USA - Sunday, March 25, 2012 2:40 AM CDT

From far Israel I want to tell you - I admire you. I'm also a CIDP patient.
Are there other cases of success with stem cells in CIDP apart from yours?
With all the best wishes, Shaya
Isaiah Nebenzahl <ineb@zahav.net.il>
Jerusalem, Israel - Thursday, February 2, 2012 9:14 AM CST

Hi Jen, I have a 12 year old boy who has CIDP and is doing IVIG treatments every 28 days. We hold our breath each month hoping and praying that he last the 28 days before relaps. At first he would last with no problem but after almost a year of this treatment he is not responding as good to it. My question is do they do this (SCT) on childern? And where would I go to find information on it.
kerryann
reidsville, ga usa - Tuesday, January 3, 2012 7:21 PM CST

HI Jen & Rick,
Haven't ckd your page in awhile so when ckg just now was so happy to see an update with GREAT news.
Happy Thanksgiving, Merry Christmas, & all the best in '12!!
Kim & Joe (Mayo friends)
Kim & Joe
Waterford, MI USA - Wednesday, November 23, 2011 2:07 PM CST

God Bless you always...Thank you for keepin up with your ongoing health and hope. My friend has been sick for about 6yrs. I wish I could help her. She is on weekly IVIG and is constantly fighting infections and has pain and tremors. Her insurance was actually trying to deny her the IVIG and make her lower her dose so her Dr went to fight for her. She is a speech pathologist who helps children get the education they need, she has 2 teenagers and she is chronic constant pain and ends up in some ER Dr office from something way too much. Do you know if your DR is looking for patients to be part of a study like you did? Her insurance is basically maxed....you know the pain and the story.....God bless you....bye for now....the friend, lori
lori <lorkster1@yahoo.com>
- Sunday, July 31, 2011 4:29 PM CDT

Yours is a marvelous story! My brother is afflicted with CIDP; I'm trying to get him to contact you & Northwestern University at this time....
Robert E. Yorke <yorkere@sbcglobal.net>
Riverside, CA U.S.A. - Thursday, June 23, 2011 1:17 PM CDT

Hi. I am so happy to have found you, and see you are doing well after the stem cell transplant. My mom found out 2 years she has C.I.D.P. She has been having treatments every 3 to 4 months. She's on a home ventilator, oxygen and has a trach. I am relived to see there is still HOPE!! I would love more information regarding stem cell transplant, so we can go forward with my mom. God Bless and thank you for your blog to help others!!
Deanna Gregory <deanna.photo@toltecltg.com>
Iuka, MS USA - Thursday, February 24, 2011 10:23 AM CST

Just stopping by to save this to my bookmarks so I can read at a later date. I was dx Dec '10 and am going on my 3rd IVIg treatment on Thurs. However, I just got the paperwork today to try to get in to NW for a SCT. I've followed a couple of others from the GBS/CIDP Foundation web site and have been encouraged to at least try! God bless you for what you did back when it was really new! I may write more later or to you directly.
Wendy Nash <wegrow4him@verizon.net>
New Port Richey, FL USA - Saturday, February 19, 2011 9:34 PM CST

Just diagnosed 4 years ago was told by a neurologist and UCSF there was no way I had this now I am in bad shape
Mike Seymour <gunwaste@yahoo.com>
Raymond, Ca USA - Saturday, January 22, 2011 8:26 PM CST

Thank you for sharing your story. After eleven years my dad lost his battle with CIDP. As a family member watching him struggle with this horrible disease, I'm glad to hear that there is a possible cure. We've been told it's not genetic, but his sister now has symptoms, and was recently diagnosed. So, knowing that there are options and research and strides being made is reassuring. Again, thank you for sharing.
Kellie Fernandez <kelliefernandez@live.com>
Oceanside, CA 92057 - Tuesday, November 2, 2010 5:28 PM CDT

Hi Jen and Rick,
I'm so glad that you were able to get the stem cell transplant... I know how incredibly painful this disease it. How are you doing now? When you noted that you were 'free' of CIDP, I wasn't sure if that was a relative term or an absolute term; meaning that there were no more symptoms at that point in time? if so, wow! even if not....a relative relief would still be wonderous.
I too am a CIDP colleague since 1994. I've been in a relative remission (have to take prednisone and pain maintenance meds) since about 1998 after vigorous and many IVIG infusions. I've noticed for the last few months that my vision is starting to double occasionally. At 58, it'll be interesting to see what happens.....my best wishes for continued good health!!
Paul Schweikardt <paulschweikardt@yahoo.com>
Hendersonville, NC USA - Wednesday, October 20, 2010 7:23 AM CDT

Hi Jen & Rick,
Sure hope things are still going great for you both & your girls.
Kim & Joe (Mayo friends)
Waterford, MI 48327 - Monday, September 20, 2010 11:00 AM CDT

To have been doing my own yardwork, playing tennis,bowling,etc. in my spare time( I'm a dentist), a few years ago, and now can't do any of these, is aggravating.CIDP has realy worked me over" It is great that Jennifer is doing so well! I hope stem cell transplants will be available in San Antonio soon!
James F Bonner DDS <jfbddsfagd@yahoo.com>
San Antonio, Tx Bexar - Thursday, September 16, 2010 9:48 AM CDT

Hi, Hope your feeling better.. I have CIDP also on my second round of IVIG and makes me so ill.. I would like to chat with you more about your experience.
Dawn Sellars <dmorris0101@hotmail.com>
Edgewater, MD US - Sunday, September 5, 2010 1:15 PM CDT

You are an inspiration!
Carol Young
Cedar City, UT USA - Sunday, July 18, 2010 10:19 AM CDT

I'm almost 60, have had CIDP for eight & a half years. Praise the Lord for your healing & your long jouney. I am very heartened by your story. Thank you so much for sharing. God Bless You!
Susan Smith <jspinegully@sbcglobal.net>
Tyler, Tx USA - Wednesday, June 23, 2010 6:15 PM CDT

Im so glad to know you over this Jannifer!!!!
Good luck to you and god bless you and your family! :)
I am suffering from CIDP for 2 1/2 years,8 month prednisone treatment with no results...waiting for my sural nerve biopsy to start plasma exchange/IVIG.Last week started herbal pills "Myelin Sheath Support" /webside is Planetary herbals.According to pharmasist and my own reseach this herbal supplement has a good potential for CIDP...
If anybody has any news about treatment PLEASE share it with me here or on my personal email: svinnikov@msn.com

LET'S NOT GIVE UP!

Svetlana <svinnikov@msn.com>
Brooklyn, NY USA - Sunday, June 6, 2010 10:43 AM CDT

Hello
My name is Svetlana.
I'm 44 years old New Yorker.
Diagnosed with CIDP(first symptoms 2 1/2 years ago),would like to join the group please.

Svetlana <svinnikov@msn.com>
Brooklyn, NY USA - Sunday, June 6, 2010 10:06 AM CDT

Dear Jennifer and family, I am so happy that you are doing well. 5 years!!! Wow. My husband is still on IVIG but it is not working as well now and they are considering other options, perhaps Rituxan. We'll see. Again, Congratulatins!
Anne <louiscdouglas@yahoo.com>
- Wednesday, June 2, 2010 11:05 AM CDT

so glad you nare doing well. I havew CIDP and just finishing IV prednisone. I will continue to follow your story.
Millie <mansfieldhouse@comcast.net>
Lacey, WA USA - Wednesday, May 5, 2010 3:08 AM CDT

Hi, I have CIDP, am getting IVIG every 3 weeks. I have pain and neuropathy in extremities. I was diagnosed 3 years ago, two months after being diagnosed with leukemia. Northwestern would not accept me, because of my history of cancer. I was wondering if any medications were even a little helpful to you, prior to stem cell procedure? Please let me know if you have any suggestions.
So happy for you, and your family, that you have your health back. Take care.
Shannon Lawson
Brookfield, WI USA - Monday, April 19, 2010 8:50 AM CDT

Dear Jen, So happy to hear your doing well.Just sat down to see if there are any new treatment out there for cidp.Was reading thru your guest book and seen the last time i was here was 07. The pred. and ivig has helped me as far as getting me back on my feet for short bout,Know i shouldnt complain but have the drive to be able to do more,It dosnt take long for the pain in my feet to sit me down,the balls of my feet and my toes curl under sometimes. I try to work them with my hands quit often. Dose anyone have any info on this, and is there a diet that will help reduce the inflammation. Keep up the good work and keep staying possitive. God Bless you all.
Brenda <tbstarr@sbcglobal.net>
Warren, oh usa - Monday, March 29, 2010 8:58 PM CDT

Thanks for your website
Wayne Dawsey <wdawsey@sccoast.net>
Aynor, SC USA - Saturday, March 6, 2010 12:06 AM CST

My 32 year old daughter has CIDP for 3 months now. I would love to get her stem cell treatment. We live in New Jersey. If anyone has any thoughts or ideas for us, please email me a jtrobert@iepos.com
Thanks----Joe Trobert
Joe Trobert <Jtrobert@iepos.com >
West Paterson, NJ 07871 - Sunday, February 28, 2010 5:41 PM CST

I am completely amazed to hear about all of these people with CIDP. I was 9 years old when I was diagnosed with this horrid disease, back in 1986. I was told I was one of the first cases. I went through many of doctors, not knowing what I had or just basically guessing what was wrong with me. I started on high doses of prednisone, 100mg daily, it did not work. Then I started receiving plasma phoeresis, daily in the hospital for weeks at a time, got a little bit better, then completely week again. Started receiving phoeresis out patient, continued with weekness. Had a central line put in my chest to start receiving chemotherapy (cytoxin), still didn't help. Doctors started losing ideas to use, changed doctors to an immunoligist out of Loyola Hospital in Chicago, IL. He continued with phoeresis and started me on Methotrexate, which had just came out for asthma and/or arthritis. That finally worked. Oh and I did receive the IVIG medicine and had a horrible allergic reaction to that, stopped breathing, had to be resesatated, so they were not trying that again. But with the combination of the Methotrexate and plasma phoeresis back in 1989. I have been in remission for now 21 years. I did suffer from permanent nerve damage to my hands, still functional, but they shake mainly in the morning. I do from time to time get tingling in my fingers and my feet, but nothing too severe. I have not even seen my doctor since I got pregnant with my first child back in 1995, just to make sure I wouldn't relapse or my child would not come out with it. But here I am 21 years later, happily married working in healthcare and with 4 beautiful children. I do fear that this disease will come back, but I do not dwell on this. I am blessed with life, and I will continue to live life normally.
Vicki <vicknpab@sbcglobal.net>
Plainfield, IL USA - Thursday, February 18, 2010 10:02 AM CST

I read you story in the herald News over the weekend and decided to contact you about a question I have. I have had CIDP for 3 1/2 years since being diagnosed. I have responded well to IVIG going 8 to 10 weeks between treatments and have gained back all of my strength with only experieincing some numbeness and pain toward the end of my treatment cycles. Question: You mention in your story that you are in remission but still experieince some numbness. Everytime I feel the symptoms I am instructed to get a round of treatments. How did you or your doctor determine that you are in remission?
Scott Creech <scotkris@sbcglobal.net>
New Lenox, IL - Monday, February 15, 2010 12:37 AM CST

What a gift you have shared with the rest of us who live with CIDP by sharing your story in The News Herald! Thank you for your courage undergoing the stem cell treatment and your generosity in making it known.
Pat Mitchell <patmitch751@yahoo.com>
Joliet, IL - Saturday, February 13, 2010 1:34 PM CST

Dear Jen,
I always knew you were going to be somebody big & important! So glad to read of your health and wonderful family.
Wishing you all things good,
Sarah Mays (Schliemann) <sarah.m.mays@gmail.com>
Crown Point, IN United States - Wednesday, January 6, 2010 6:54 PM CST

My prayers are for you and your family. Faith will take you far and beyond your journey. Just dont loose hope. I ran accross your website and knew I needed to drop you a little note. Happy New Year! To new beginnings.
Irene Smith <happigolulcky100903@ yahoo.com>
Delaware , oh usa - Friday, January 1, 2010 12:56 AM CST

I have had cidp about ten years now,(2009)It has made life dificult, but, Jennifer's story is very incouraging. Hopefully I will be able to get treatment (stem cell transplant) if it is appropriate and get on with my life, and throw my walker away!
James F Bonner DDS <jfbddsfagd@yahoo.com>
san antonio,tx, tx bexar - Tuesday, November 17, 2009 6:54 PM CST

Hallo,
Ik ben Ronny uit Belgie.
drie jaar heb ik CIDP
ik zal voor je duimen
grt Ronny
debruyne ronny <debruyne.ronny@skynet.be>
Oostende, Belgie - Sunday, June 28, 2009 10:25 AM CDT

Hello- hope anyone can be helpful. My husband was diagnosed with CIDP last August, 2008. After "mini-treatment" for 3 days in hospital with Gamunex, he was scheduled for 10 treatments of Ivig's.

By the 3rd treatment, he was wheelchair and bedridden-no more stumbly walking, no getting up with help, no more using electric carts and going to shopping and lunches or dinners. No more helping me in the house, no more taking out the trash, no more driving....

That week-end, he became very sick and by Monday, was in ER and hospital. Pneumonia, electrolyte imbalance, kidneys had virtually shut-down. So, hospital for 10 days, 20 days inpatient rehab and then 20 days in nursing facility. Then, 3 months of wasted time with home health care- and no muscle stilulation- no walking, etc- while on high dosages of prednisone (up to 100 /day) and finally down to 40/day.

All the time, memory problems ...sometimes better, sometimes not.

Finally began outpatient treatment physical therapy. After 2 weeks, he was scheded to get 5 days of Gamunex-again- to see if worked this time. After 3 days, treatment was stopped because of hematoma created on arm from being in bed all the time.....

A week and a half later, I called Ambulance and he was brought to hospital with pneumonia which they diagnosed was actually caused by the hospitalization a week and a half later. So, 12 days in hospital- antibiotics, respiratory, etc...

Now, he's in a specialized hospital to try to heal ulcers caused by being in bed for so long.(heels,etc)

The medicare rx company has contiually denied Celcept because it is not "approved Doctor says he has an incredibly severe and aggressive case if CIDP. Yes,all tests diagnose CIDP.....

Anyone getting any other treatments that might help? This man was strong, burly, funny, smart, analytical, independent....and now....

Any specific hospitals/doctors/contact info would be appreciated. Anyone else with problems getting medications from RX companies/Medicare who have appealed and were able to get the medication?

My thoughts are with you all- I understand, SS
SS <leapsandputs@aol.com>
Gainesville, fl Alachua - Thursday, May 14, 2009 6:10 PM CDT

Hi Jen & Rick. Just thinking of you both & checked to see if you've updated your site. No News Is Good News!!!! Hope all is going GREAT.
Take Care.
Kim & Joe (Mayo Friends)
Kim
Waterford, MI USA - Monday, November 10, 2008 11:08 AM CST

Hi Ellis from gainesville fl, Ive have CIDP and have weekly IVIG treatments for about two mounths now, not any changes yet. god bless you and your family stay strong and brave.
Ellis Cherry <rigbypig@yahoo.com>
Gainesville, fl usa - Sunday, November 9, 2008 10:41 PM CST

God is wonderful.......I am so greatful,I found this site. Please can you help me? My husband was just diagnosed on Oct 23,08....He has been in horrible pain for 4 months with leg numbness, buttocks and feet numbness. Please help! Sincerely, Annette M Rivas/ Tucson,Az.
Annette M. Rivas <arivas@longrealty.com>
Tucson, Az. usa - Saturday, October 25, 2008 12:37 AM CDT

Hello Jen and family,
I am so happy to read that you are in remission and doing well. May God continue to bless you and your family for many years to come.

After being diagnosed with CIDP at the age of 23, I am also looking to the stem cell transplant to also be in full remission soon.

Thank you for sharing your story on this site and I hope more continue to do so. STAY STRONG

By the way: for those that have facebook.com accounts, there is a great facebook group called "CIDP". Please join the group if you'd like to meet others and get support from people that completely understand.
Tannia
- Tuesday, September 30, 2008 1:07 AM CDT

Jen: I am so happy for you. You are such a couragous woman. My husband (we thought) has had cidp for almost 3 years. Officially diagnosed Jan 2008. Got sepsis with prednisone & imuran, on to ivig, now plasmapheresis. 2nd opinion at clevleand clinic says possibly not cidp. Still studying and testing for amyloidosis.Hopefully by end of Sept will know something. At 66 years of age I do not know if he could get stem cell transplant. Congratulations and enjoy your new life.
Joan M. Fox <wandjfox@wadsnet.com>
loudon, tn US - Monday, September 22, 2008 12:00 AM CDT

Thank God Jennifer....sorry I haven't written... take care. Margo & Jim from the pub in Batavia a couple of years ago. We will continue to pray for you.
Margo <margocibock@msn.com>
Wheaton, Ill - Monday, August 18, 2008 5:41 PM CDT

Congratulations!!!
Ron C
Chattanooga, TN USA - Tuesday, August 5, 2008 8:19 PM CDT

Hi Jen,
Im so glad to hear you over came this. I too was just recently diagnosed with CIDP and I am only 13 years old but this website gave me hope. I hope one day I will be like you!
JS
- Saturday, July 12, 2008 10:51 AM CDT

Hi Jen,
Great to hear the wonderful news on your long journey. I am right behind you. I had stem cell for severe RA and have been disease and medicine free since the procedure was done 2years and 4 months. I am also having the breathing problems as you which I attribute to the high doses of chemo. Although it was tough to go through I feel Blessed. I had alot of bone deformities as result of my disease and am now having corrective surgies. I just had my left foot done and breezed through the surgery.
Blessings to All,
LuAnn
LuAnn Wilkison <LawsBox@aol.com>
Tx - Tuesday, July 8, 2008 9:44 AM CDT

Hi Jen & Rick,
Sure glad about your good news & that life is back to "normal" (whatever that really is)/healthy in your family/household. I haven't checked this site in awhile so was so appreciative for your recent update!!
Take Care
Kim & Joe (Mayo Friends)
Kim & Joe
Waterford, MI USA - Wednesday, June 25, 2008 9:45 AM CDT

Hi Jen,
I haven' checked your web page in so so so long... perhaps a year or two, but I did today and it was so funny that you just updated yesterday. Ironic! We have a family member who sent us another caring bridge for one of their neighbors. While I was reading it, I thought gee I wonder if Jen still has her caring bridge page. SO glad you are in remission. That is excellent news. I know from seeing you guys and all that you were well, but it's nice to read about your good health. See you soon
shawn
Shawn Nichols <snichols1225@sbcglobal.net>
- Friday, June 13, 2008 9:26 PM CDT

Hi,
I found your site through research for my Paul on CIDP.What a blessing you are that there is hope!!!!Paul was diagnosed recently and I want all the help for him while he is pretty much a 2 job holder.we both want him to only do his 1 job as he wont hear of going on disability.I am proud of him.Are there doctor's near TN do help with medicine like you have recieved?
Angelo <heythere51@netzero.net>
Chuckey, TN Greene - Thursday, May 15, 2008 8:46 AM CDT

Hi Jen & Rick. Sure hope things are going great for you both & your girls.
Take Care
Kim & Joe (Mayo Friends)
Waterford, MI USA - Tuesday, March 11, 2008 2:46 PM CDT

Hi Jennifer-

How are you?

I came across your site a few months ago and just read your journal entries the other day. I too have CIDP. I was diagnosed when I was four and am now 21. When I was first diagnosed I was put on steriods and IVIG's. In the beginning they worked. Unfortunately as the years went on I became immune to them and I also used to get extremly ill from the IVIG's. At age ten IVIG's were stoped and when I was 15 steriods were stoped. These past five years I have declined physically and now need a lot of help doing everyday tasks. Before,I started reading your journal entries and researching SCT, I had no hope and now I do. I feel like this could be a good option for me and have e-mailed Northwestern. I hope to have this done by the time I am 25.

I think this procedure is amazing and I am so happy that it worked on you:)!!

Jessica <jessica_laughhunn@yahoo.com>
MI USA - Sunday, February 24, 2008 7:04 PM CST

dear jen, ive been thru your guestbook a couple of times. i hope your doing well.i heard the letters cidp,nov. 2007 ive be on predisone and have had 6, 5day ivig treatments since then.i have had some improvement,wheelchair, walker with afo's and now just a cane. i have scearched the web to see what to expect and from what i see is everyone is different, i have asked my dr. at university hospital of cleveland and he is real happy with my progress, he tells me he dosnt have a cystalball.i also try to stay positive sometimes its hard.at this time i keep telling myself i'll be walking in the grass in the spring, i can only pray and belive. i truly hope your doing great. and i hope to hear from you sometime it would be nice to talk to someone else who has been there.may god be with you and your family.brenda
Brenda <tbstarr@sbcglobal.net>
warren , oh United States - Friday, January 18, 2008 7:07 PM CST

Dear Jennifer,

I am so happy to find your website and see you are feeling better(maintaining). I too have CIDP in a variant form called Lewis Sumner Syndrome(LSS). Being diagnosed just 10 months ago and crippled by the disease for more than 15 months it has been a complete challenge to a 41 year old man who was strong, atheletic and active. Like almost everyone here in the guest book life has changed in many facets, but it gives me hope that someday life will come back full circle from the positive stories and support I have read today. Keep positive and Bless all of you.

John Rubio <emfly09@yahoo.com>
Pinckney, mi USA - Thursday, November 29, 2007 9:42 AM CST

Hi, Thank You All for your heartfelt stories--I also have been diagnosed with CIDP 5 years ago--I'm a 45 year old, female. Before they were able to diagnose me, I was in a wheelchair for 6 weeks--unable to use my arms or legs--I was put on 85mg of predisone-within 3 weeks I was out of the wheelchair and back to work, as a mail carrier. One, of many, side effects of predisone is weight gain, in 3 months I put on 65lbs. I was miserable--but I was walking and miserable!! I was on predisone for about 1 year--I slowly returned to my normal weight-(I kissed the scale that day)! In 2005 I was diagnosed with discoid lupus. Up to about 6 months ago, I was very lucky to have only minor relapse. The luck of the Irish has ran out!! I have developed weakness and pain in the legs and arms. We were not as successful with the prednisone this time--I have tryed IVIG therapy with no response. My Neurologist gave me some potential treatment options--plasmapheresis, cellcept or IV steroids.
Can anyone help me with pros and cons of these tratments? I just started taking Tramadol--I'm hoping and praying I can keep working!! God Bless all of you struggling with this illness--You are not alone!! Any suggestions are welcome!!
Mary Thompson <marythompson777@msn.com>
Menomonee Falls, WI USA - Sunday, October 21, 2007 3:45 PM CDT

I was diagnosed with CIDP on June 6, 1999. At that point, I was already experiencing numbness and weakness in all 4 limbs. I was 21 years old. When I think back, I was getting progressively weaker probably 1.5 years before my diagnosis. Of course, at the time, I didn't notice it because it all happened so subtly.

I went to several doctors in the years leading up to my diagnosis, but nobody was really listening to what I was saying. I was told it was just an inner ear virus or a cold, and numerous other things. Thank goodness I went to see the chiropractor and since it's not normal for a 21-year-old woman to be experiencing numbness in all four limbs, I was referred to a neurologist.

It was such a wonderful experience when I explained my symptoms to the neurologist and he said it made complete sense. Finally someone had listened to me. I received IVIG for close to one year, and wasn't getting better. I was also started on Imuran an immunosuppressant. After the year of treatment and limited improvement, I was referred to the Mayo Clinic and solu-medrol was started. I felt good after the first couple of weeks but then I plateaued again.

Finally, after four months of the steroids, I was referred to Dr. Paul Olson in Minneapolis. This is the man who gave me back my life. I started plasmapheresis, chemotherapy (cytoxin), and weaning off the solu-medrol. Overall, I underwent this therapy for two years and on November 4, 2002, I completed my final treatment. I regained sensation, strength, and my life. The only remaining symptoms are hand tremors and the occasional numbness on the pads of my feet.

I remember feeling discouraged, angry, and sad. I am proof that treatment does work--It is possible to recover from CIDP. I think back to where I was and where I am now and I am so thankful.

I wish you all the best in your road to recovery.
Stephanie <shess28@gmail.com>
Rochester, MN USA - Monday, September 24, 2007 4:25 PM CDT

Greetings Jen,
IN 1999, when I was first diagnosed with CIDP, I especially didn't like the first word of my disease, "Chronic". It sounded very much like, "it has trouble going away." My initial bout with CIDP is chronicled at CIDPUSA Foundation in patient #5 (you being #3). I hope you are feeling better after taking the SCT. What you are doing is offering yourself to doctors and researchers who are trying to make all of us get better and that I find commendable. Hope you are doing well. You will be in my prayers.
Sincerely,
Ed Sullivan
Edward J. Sullivan <eds501@aol.com>
NYC, New York USA - Saturday, September 1, 2007 8:53 AM CDT

Hello - you probably do not remember but you spoke to my son last winter about the SCT at NWM. Thank you for doing so, he is half way through the SCT treatment. Your experience and the experience of the second SCT patient gave Kevin the courage to make his decision. My healthcare company approved quickly so we were off to Chicago to start the treatment. Thanks again.
Maria Devery <mariadevery@comcast.net>
Berlin, Ct USA - Friday, August 31, 2007 10:28 AM CDT

Hi Jen. Hope you, Rick, & your girls are having a great & healthy summer. Take Care. Kim & Joe (Mayo friends)
Kim
Waterford, MI USA - Monday, August 13, 2007 9:20 AM CDT

Hi Jen, Best wishes on your continued recovery. I was just diagnoised with CIDP at the Cleveland Clinic, on July 7, 2007, and started my treatment July 9, 2007; with steriods. I have regained the strength and feeling in my hands however still have "banding" in my feet but am feeling stronger every day. As my sister has Multiple Sclerosis, my symptoms were first thought to also be MS. I had never heard of CIDP until I started researching my symptoms while waiting for my appointment at the Clinic. I am 51 years old and had lived a relatively healthy, pain free life until this year so the onset of this disease was quite a shock to my system. Now that it has a name and I know what I am dealing with I have hope. Your story is inspiring. You are a brave girl and I wish you best. YOU GO GIRL !!
Sue Rach <yellow104@netzero.net>
Akron, OH USA - Sunday, July 29, 2007 7:51 AM CDT

Hey Jen,

I just decided to stop by your page and check for updates. It'd be super cool to have you add one to the journal. It's so amazing to see all the people who write you from all over the world. Especially the teen in OH. It makes me want a miracle for her! I hope you, Rick and the girls are having an awesome summer. Love, Kimm
Kimm Oostman <koostman@comcast.net>
Aurora, IL USA - Tuesday, July 10, 2007 1:12 PM CDT

hi mom i hope you're feeling good!!!!!
i love you!!!!
meghan <starz95@sbcglobal.net>
plainfield, IL U.S.A - Thursday, July 5, 2007 3:04 PM CDT

Hello from Australia, pleased to see you are doing well after your stemcel treatment, long may it continue. I have been diagnosed for three years now and have taken various medications without success. It is a daily struggle but one battles on in the hope that new and succesful treatments become available. Good luck and God Bless you.
George McCardle <speyburnfarms@optusnet.com.au>
Dairy Plains, Tas Australia - Monday, May 21, 2007 8:44 PM CDT

hello, my name is megan im a 16 year old girl about to finally be 17, iv been living with CIDP since i was 4. Its kind of hard, i am unable to attend school because i am constantally getting sick, and when i do get sick i cannot get over it. I have had to have ivig, plasmafrosis (or however you spell it), steriods, cellcept, neuriton, and countless other drugs. i think they wiped out my immune system some time ago, so i get sick from going to the mall. I also have pcos, which devloped like 2 years ago. I have bad days all the time, like in the last month i have had like one good day if that, and my good days are not even that great. i was wondering, is there anything special you eat, or do to manage and help control weakness, fatuge, and nerve pain? i am on lyrica, but thats it lucklly, im just trying to get through high school without pain medication. and i think it is amazing you got that stem cell thing, like i have always been told im going to have this the rest of my life, im just intersted in finding ways to cope with it, and live as normal life as i can. if anyone has any suggestions, please feel free to email me! thanks- Megan
Megan Risch <meganrisch@yahoo.com>
hamilton , ohio U.S.A - Sunday, February 18, 2007 2:01 AM CST

Thank you for the encouragement, I have a sister in Florida going thru everything you've gone thru. Widowed with 2 young children. We, (the whole family in New Hamshire) have prayed for strength for herself and her 2 children who need her.
Line Comeau <tckatlnz2@comcast.net>
Goffstown, NH - Monday, January 29, 2007 10:27 AM CST

Thank you so much for the update. Sure hope '07 will be a great year for you, Rick, & your girls.
Kim & Joe (your Mayo friends)
Waterford, MI USA - Monday, January 29, 2007 9:06 AM CST

Hello Jennifer, I read about the stem cell treatments in Chicago for Lupus, a few years ago. I was diagnosed with CIDP in 2002 at the Cleveland Clinic and this news gave me hope of a cure. Now, I read that you are the first to undergo the treatment and I am elated to see you doing so well. They certainly chose the right person! I hope you will be cured after this and have a wonderful life. Thanks for pioneering the way and giving so many hope.Char
Char J. Michelson <cjmichelson@yahoo.com>
Austin, TX USA - Saturday, January 13, 2007 5:07 PM CST

Jen, boy do I understand. I started having CIDP symptoms 4 yrs ago and was diagnosed 3 yrs ago. It took them forever & I could do nothing for myself by then. My first neurologist said, "nothing I can do, come back in 6 mos." If I had listened, I would be dead. I didn't & I'm not. I'v been in remission for a while now and feel great. I hope the stem cell thing works well for you! I see it in many people's future...including mine. My prayers are with you. Vicci
Vicci Anderson <vicander30@aol.com>
West Memphis, AR USA - Thursday, January 11, 2007 10:44 AM CST

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