naysayers, skeptics & institutionalized sick

Hi Alice::)

I couldn’t resist posting the question; maybe cause it has been a long winter, and maybe I was bored, and knew this needed a tad bit more discussion…

Yes, I am a skeptic.. And a debater.. And a Fighter… I don’t think quitter or fingerpointer or blamer applies to me….. Not of you, or others..

I just want exactly what you say.. A safe open dialogue for people to discuss things… I don’t think anyone dismisses that you have been thru a lot.. I think many or all of us have been dealt blows.. Have we given up? No..
I don’t think debating the word “cure” should ruffle any feathers.. And at that, I will leave it..

I’ve spent the last 2 1/2 years coming back.. I ain’t quitting either…

I don’t want to pick on you… Instead, I am thankful you are a success story… I just want what’s best for you and all of us…

Deleted by author

As I said in the other posting, I meant in no means to rain on anyone’s parade, but people have to be thoughtful about the potential risks and benefits of anything as serious as stem cell transplantation. I work with lots of children who will, are getting, or have gotten a stem cell transplant for cancer and some for other serious medical illnesses with significant lifelong consequences for which serious medical procedures like hematopoietic stem cell transplantation are sometimes done including some genetic and some autoimmune diseases (the latter being rarer in children). Yes, many of these are cured and very sadly, many still are not despite this valiant and courageous and serious act. I read the face sheet that your post linked to and they, like in cancer, define cure (as is standard in medicine) as no recurrence or progression in 5 years. It says it right there in the summary. I also have read the published reports of the benefits of stem cell transplantation in CIDP. What is published is that it does not work for everyone–the best reports of more than a few patients add up to half. At the GBS/CIDP Symposium, the experts there said it worked for maybe 20%. Many of the summaries actually question the potential benefit in the face of the risks of transplantation including one just published. I do think that the sucess rate is now higher than that (maybe much higher) based on newer protocols and also that the risks are less with non-myeloablative transplants. I do not know what the experience at Northwestern is or how many patients have been transplanted with CIDP there, but some people relapse. One of the papers just published about HSCT in CIDP said that about 5-13% die of complications of the stem cell transplant. Yes, non-myeloablative transplantation is safer, but there are serious risks still and people need to know this as well as the hope that it might work.

All of us fight each day for an ability to be as much as we can be despite this aweful disease. I am not about to give up or quit fighting nor do I ever want to discourage anyone in their fight–I chose the name WithHope for a reason–it is the way that I live life and I want all of us to do us. Maybe it is because I do work with lots of children that have gotten stem cell transplants, though, I want people also to know that the process is not easy nor the results quaranteed. I hope so very, very much that it works for you and all the others that have CIDP. I hope very, very much that the published medical literature and the discussions by the experts at the GBS/CIDP foundation meeting a year and a half ago are far behind the times, but both of these said to have caution and be thoughtful about HSCT and carefully weigh risks and benefits.

WithHope for a cure of these diseases

Hi Alice,
As you stated, you mean no ill will in your post, I too mean no ill will. I first want to address your comment about the site being depressing and that you did not come here for support. Well, yes the site can be depressing at times, some people do not have coping skills, are in denial or like me, just plain sad about what is on their plate. Those that come here with their sad stories KNOW that they can depend on someone, anyone to hear them. My feelings were hurt, I actually feel betrayed, because most on the site try to keep an upbeat tone with occassional set backs and when there is a sad time, they, I, feel we can come here with no strings or judgement. I feel like you grouped us all into a category of manic depressives needing a prozac adjustment. You mentioned that you did not come here for support, but you did!!! In the begining you asked us to write a letter in your behalf. You did come to us for support. You included us in your journey of ups and downs to get to the trial as well as the procedure itself. You made it personal, you asked us our personal thoughts for a book that you might one day write, we obliged, happily and willingly. WE ALL need support at some time or another, maybe some more than others. I think God put us here to help each other in our times of need whatever they may be. Your choice to follow your course was your choice and others make their choices, all for our own reasons, insurance, fear of the unknown, fear of the procedure itself, fear of the known. But they are our choices. I feel like because we are all not taking the path you did, you are telling us we deserve to be where we are. I am college educated and I would consider myself well read and able to make sound choices with my information and reasearch and the help of my doctor. Don’t you think I would jump at the chance to cure Kevin if I felt confident the cytoxan would not interfere with puberty, possibly cause cancer, stunt sexual development etc? I feel judged that I am not providing the proper care for my 13 year old according to the trial you are involved in. As With Hope mentioned, there is a 5 year wait before you are cured. I have had cancer and am at the 7 year mark, so yes there is hope to get to the cured part. But we cannot give people the impression that the cure is quick with no potential risk.

Maybe on a day you might feel sad or tired, you might stumble upon this site again and we will be here to help you if you need us. I wish you continued progress in your journey and I hope that you are able to bring hope to others who are in need of questions being answered. We are all put on this earth to help each other, that is something I do not want to loose site of. I am glad that you are feeling better and I am glad that you had the courage to join the trial. You are paving the road for the rest of us, so thank you for that.
Dawn Kevies mom

We are commenting on things that matter and that are important to us, but I hope that people realize that it is with a goal to help each other. Dawn said it so beautifully “I think God put us here to help each other in our times of need whatever they may be. ” I also think that that is the reason this site exists and what we do best for each other.
WithHope for a cure of these diseases

I feel compelled to join in this discussion for many reasons, so here we go …

• This is Alice’s story – to tell as she chooses
o She brought it to the attention of the forum – I had not heard of this before
o She kept all of us informed through her (and Sophie) updates
o She gave us the links and information so we could research for ourselves
o She explained the difference between this and treatment for cancer
o She inspired many and gave hope
o And she states she is cured – her story, her words, her realization

• I’ve seen the results up close and personal and they are REAL and amazing
o I contacted Alice as soon as I read her posts about this in the forum
o We became fast friends and Skype daily
o When I met her, she was severely limited in agility, strength and energy
o As she went through the stem cell process, I saw each and every step
o I witnessed each and every high and low
o The resultant changes I continue to see daily are nothing short of amazing
o She is off all “treatments” and continues to progress daily
o She is working out again
o I flew to Chicago and visited with her, Sophie and Jim (now going through this process)
o I am a living witness of her amazing recovery

I am what many would consider a “success” story … from my lowest point; I’ve come a long way. The horrible, horrible, horrendous pain is under good control; I’m back working full time and even dancing a few nights a week!

However, I am living a diminished life.

I was very high energy and very active. I was my mother’s primary care giver. Now, I have to take extra pain meds before and after dancing. I am tied to an IVIG treatment chair every two weeks. I require more sleep. My mom had to be moved out of state to be near my sister. It takes me twice as long to do anything involving my hands/arms. I can’t retire to the location of my choice due to needing to be near good medical care. I can’t travel with my daughter – who lives half way around the world. I can’t retire and enjoy what’s left of the “good years” because I need my insurance and, oh yes, a biggie – the $6,000 out of pocket I get to come up for this year on top of my share of the premiums, which goes up each year.

I take 10 prescription pills per day to control the cramping and pain, not including the extra pain meds I need to take occasionally – especially if I do anything physical. While I can dance, I cry if I spend more than 20 – 30 minutes pushing a grocery cart. I cannot do my gardening, my eyes don’t have enough left in them to read after working all day (and I LOVE to read) and I find my beloved pets sometimes to be too demanding when they just want to be in my lap when the pressure of them on me causes me pain.

And, at some point, it is understood that the IVIG treatments and pain mgt could become less successful. Oh yes, I live alone, have no family in the area to help me and must depend solely on myself financially.

I also recognize I am very lucky in very many ways. I have a good job, flexible hours, an amazing community of friends that help me whenever I ask, insurance, my own home and many, many blessings. I know that I am NOT in the worst situation and that many in this forum would trade with me.

However, I don’t want to be treated. I WANT TO BE CURED!

And Alice’s story gives me the hope I will be. Some damage from the ravages of our illness cannot be reversed, so it is best to do this sooner than later. [B]I don’t see this as a last resort effort [/B] – in fact Dr. Burt’s interview clearly states it is not as helpful after much damage (still stops the progression, but can’t make the repairs).

With hope that there is already a cure for these diseases, I am in the process of applying for this program.

[QUOTE=Linda Martin]I feel compelled to join in this discussion for many reasons, so here we go …

• This is Alice’s story – to tell as she chooses
o She brought it to the attention of the forum – I had not heard of this before
o She kept all of us informed through her (and Sophie) updates
o She gave us the links and information so we could research for ourselves
o She explained the difference between this and treatment for cancer
o She inspired many and gave hope
o And she states she is cured – her story, her words, her realization

• I’ve seen the results up close and personal and they are REAL and amazing
o I contacted Alice as soon as I read her posts about this in the forum
o We became fast friends and Skype daily
o When I met her, she was severely limited in agility, strength and energy
o As she went through the stem cell process, I saw each and every step
o I witnessed each and every high and low
o The resultant changes I continue to see daily are nothing short of amazing
o She is off all “treatments” and continues to progress daily
o She is working out again
o I flew to Chicago and visited with her, Sophie and Jim (now going through this process)
o I am a living witness of her amazing recovery

I am what many would consider a “success” story … from my lowest point; I’ve come a long way. The horrible, horrible, horrendous pain is under good control; I’m back working full time and even dancing a few nights a week!

However, I am living a diminished life.

I was very high energy and very active. I was my mother’s primary care giver. Now, I have to take extra pain meds before and after dancing. I am tied to an IVIG treatment chair every two weeks. I require more sleep. My mom had to be moved out of state to be near my sister. It takes me twice as long to do anything involving my hands/arms. I can’t retire to the location of my choice due to needing to be near good medical care. I can’t travel with my daughter – who lives half way around the world. I can’t retire and enjoy what’s left of the “good years” because I need my insurance and, oh yes, a biggie – the $6,000 out of pocket I get to come up for this year on top of my share of the premiums, which goes up each year.

I take 10 prescription pills per day to control the cramping and pain, not including the extra pain meds I need to take occasionally – especially if I do anything physical. While I can dance, I cry if I spend more than 20 – 30 minutes pushing a grocery cart. I cannot do my gardening, my eyes don’t have enough left in them to read after working all day (and I LOVE to read) and I find my beloved pets sometimes to be too demanding when they just want to be in my lap when the pressure of them on me causes me pain.

And, at some point, it is understood that the IVIG treatments and pain mgt could become less successful. Oh yes, I live alone, have no family in the area to help me and must depend solely on myself financially.

I also recognize I am very lucky in very many ways. I have a good job, flexible hours, an amazing community of friends that help me whenever I ask, insurance, my own home and many, many blessings. I know that I am NOT in the worst situation and that many in this forum would trade with me.

However, I don’t want to be treated. I WANT TO BE CURED!

And Alice’s story gives me the hope I will be. Some damage from the ravages of our illness cannot be reversed, so it is best to do this sooner than later. [B]I don’t see this as a last resort effort [/B] – in fact Dr. Burt’s interview clearly states it is not as helpful after much damage (still stops the progression, but can’t make the repairs).

With hope that there is already a cure for these diseases, I am in the process of applying for this program.[/QUOTE]

Linda, I’m with you. I’ll second all of what you said. Thanks for sharing and for supporting Alice, and others on their journey. I wish you all the best on your path…keep in touch. All my best…Julitta

Hello Alice. I hope that your hard work and determination pays dividends down the road. Am I a Naysayer?…no . Am I a instituational sick?… no. Am I a skeptic?..perhaps. The risk and reality of what you have just done May have caused you to be “Cured”. This site is great for support. I live 2000 miles from you and you wouldnt of been a thought in my mind except for this forum.Every one has some support from this site. Why you are on the offense about this support I dont understand. As tho your support is better than you can get here ,it reeks of an attitude of offence.Support right or wrong.
Good luck to you. ps this forum is a part of a whole support.

Alice,
I am offended!
You say you don’t mean to be offensive yet you have attacked with words,
“institutionalized sick”, “ignorance”, “uniformed skepticism”, “depressing”.
Depression is a part of GBS/CIDP for many of us. To read the post of what many have gone through may be sad but not depressing when you want to give them support. We are not as comfortable as an old shoe.
Support is what this site gives to each other, support is what this site gave to you, support is what this site will continue to give.
It is hard to understand after all the support given you that you could now use such harsh words against forum members.
Best of luck to you.
Shirley

It is too bad we can’t sit around the table and look at the facts,
and help each other out… I think as a group we could solve a lot
of what ails us..
Linda Martin.. I think your comments really enhance the discussion of
what recovery and cure means.. Really you are coming from my perspective, but don’t realize it….

You hit the nail on the head.. “I want to be cured” We all want that!
How do we get there, and what does it mean to you..

We are not gloom and doomers… I think we are looking for the answers..

Dean

Alice,

This is my first post, but I have been following your story with great interest. You are very brave and have a pioneering spirit. I am thrilled you are doing so well and thank you for sharing your story. It has brought more hope to myself and my friend who is suffering greatly from another autoimmune disease.

Please continue to spread the word about the stem cell treatment program at Northwestern, either here and/or on your blog. I am very interested in following Jim’s and your progress and learning more.

All the best to you and Sophie.
ladyg

Maybe I’m totally missing something, but I can’t imagine not be willing to try nearly anything to get better. And I don’t care if you call it a remission or a cure. I have the slow progression form of the disease. Neither IVig — 6 mos — nor my current regimen of prednisone has worked. I am on 60 mgs for the next 2 weeks and then I taper off. Not much hope of improving after the dosage is lowered, I’m afraid.

I have numbness and weakness/atrophy in both legs, left being worse then right, though right is catching up. Also my left arm/hand is affected, but pred seems to have helped with the weakness a little, thus allowing me to type.

I wear AFOs for walking, but frankly, without the possibility of stem cell transplant, I can well imagine myself in a wheelchair in the near future. Also, I make my living with the keyboard, so if the left arm/hand motor function declines, I will have to think seriously about getting long term disability through my organization. That is not how I envision the rest of my life.

I have already contacted the clinic at Northwestern. I need to have failed a course of the heavy duty immunosuppresants (cyclosporine, et al). Next time I see my neuro I am going to insist he start me on them…this is just so I can fail and hasten the day when I can do stem cell transplant. And if he refuses the immunosuppresants, I will find someone who will prescribe them. Stem cell transplant sounds like the onlly option for disease reversal, and that’s what I am holding out for. Yes, the procedure is awful, but what’s 2 months of awful compared to a lifetime of steady decline?

Sorry for the rant, but what is the point of cautioning about possible failure of stem cell treatment, debating the meaning of cure, etc. in the face of the sure fact that this disease is going to get worse? I am on prednisone now, so I have lots of energy (too much). Without it, I was fatigued all the time…just remembering how tired I got just trying to get around makes me want to do anything to get better and not feel like an invalid.

Sharon

Sharon,
You have been on a long journey and tryed many options that did not work, of course I understand your need to try the next step that might one day bring you back to the life you had before this crud. If we too were in that position and at an older age already through puberty, we too would consider the treatment as an option. Ivig so far has worked and we were at 140 g monthly and now are at 40. I am praying that because of puberty the ivig was able to rebalnce and modulate the imune system to what it once was. I am in the early stages of trying to figure out if continual havoc on the immune system is what our trigger is (stomach issues) and maybe if we fix that we can keep the gains that ivig gave us. Until all of our other options fail for us, I just think we are at a different road on the path of this terrible affliction. Prayers and good thoughts are sent your way that you get into this treatment/trial so that things can pick up where they left off!!

BTW Anastasia,
Should you not get into the trial, another member started a thread, her name is Erin. It is in regards to low dose naltrexone. It sounds very promising with little to no side affects for ms patients. Maybe with ivig, ldn, you could haqve a secondary option should the trial not be open to you or maybe even while you are waiting to find out (not sure how long it takes to get in)