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Living with Polyneuropathy CIDP, GBS, & CMT

Screaming screaming screaming

Do you ever want to just scream and scream and scream because of what disease is doing to your body and your life? The hopelessness of CIDP is dragging me down. No hope of ever getting substantially better. The constant danger of getting worse. Relapses that wipe out every bit of progress. My neuro ups my IVIG dose, I feel a little better for a while, then I crash again. I stumble around the house with a cane and feel as if I’m losing even that limited mobility. My doctor’s response? “Oh, stop being pessimistic.” But he admits he can’t offer me hope of anything beyond maintenance of the level I’m at. I know a lot of people are worse off than I am, so I don’t need that lecture. My own life is the only one I’m living, and I can’t set aside my feelings just because somebody else has it worse.

Sandra-

I’m sorry. I’m also in the exact same boat you are and often times feel like I am paddling upstream against the current.

I wish I could wave a magic wand for all of us and fix it- I can suggest what I did with my doctors but as a pt with multiple medically complex issues it may or may not work for you.

Know what is and isn’t working for you… do your research into what’s available and the dosages and success rates for those dosages. Be prepared to advocate for you and your own health care. For me it has done ok in some ways and so so in others depending on the doctor.

If you need to talk or just vent please feel free to text me

K

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Sandra and Kris:
Me too! Just spiraling down. Cane no good anymore, must use a walker, actually a rollator. Next year, who knows. Now affecting my hands so that they are weak and I can’t close one finger on each hand.
A long term relationship ended because of my increasing limitations. I was alone and not able to live on my own. I was rocked by the breakup, and also had no place to.live. A real low point for.me. I lived with a friend for a while.
I knew I needed to try to cobble together a new life somehow. I went to online dating 3 years ago at the age of 73 and I ultimately met Judy, an amazing woman. She is very good to me and really enables me to have a life. We bought a condo together and I just ran for the board and got elected. We have made many friends and are involved in many social and Civic aspects of our community.
Yes, I get discouraged about my rapidly diminishing abilities. I decided 2 years ago to discontinue further treatments because they seemed oointless. However there are two things that allow me to have the happy life I enjoy. First is Judy who makes everything possible. Second, and this is huge, I don’t have any pain. My heart goes out to those CIDP patients who suffer unrelenting pain. That changes everything.
So I get discouraged, but I am fortunate that I am still able to have a happy life as of today… Who knows what’s around the corner, Driving is becoming difficult for me and if I lose that, it will be a tremendous, devastating blow, but the present is ok.
I write this partly because I am so grateful and just need to say it out loud, so to speak. And partly I write to urge people not to give up on having a life. You may not be able to do what you used to, but you can do some things, and new things. I’m not naive - i
hope you have a partner/spouse/significant other or companion who is supportive, understanding, and helpful because that makes all the difference. I havs no advice - I’m just telling my story. Like Kris, I wish I could tell everyone of a miraculous breakthrough, but all I can offer is my wishes for permanent plateau and remission.
Mike

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I saw my neuro this morning. He is increasing my IVIG by another 5 grams per infusion for now (so I’ll be getting 40 grams each time).

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Mile

Thanks for your story. Mine is a lot different. My family and my ex decided I was faking- seriously- I can sort of laugh about it now but it’s irksome that they told my children mommy wasn’t really ill- lol like I faked my LP, nerve biopsy, mri, etc. I understand it’s easier for people to believe that it’s not really happening so they don’t have to deal with the issues as they arise. I am only 52 and truthfully I don’t know what causes my pain- the CIDP stuff; the MS, or EDS which is a rare genetic disorder that affects collagen. I’m grateful you found someone who’s supporting and allows you to live your best life.

K

Saandra

I just had an extra day added to my maintenance dose- from 35gm/4 days to 35 gems/5 days. I have been wheelchair bound for several years but have the use of my hands for the most part. I am a teacher but my students have to help me with passing computer, papers, we trade and grade anything but exams; I have been really lucky for the most part in my teaching as I teach older students. One of them actually taught me I could use google doc to write on instead of using the board. I might not have the perfect life and often I feel like I want to quit- when I go home I hurt so bad I usually sit and cry even though I did not walk a step.
I own a small business so when I’m not totally wiped- ok I’m usually wipes I make my products- anyhow I think I simply have to fill every day and every minute so I don’t simply quit.

K

Kris,

If you spend time reading posts on this forum you will see that there are many people whose families accuse them of faking! That is unbelievable to me but apparently is very common. And, many relationships have been destroyed by the onset of this affliction. Sad.

You are only 52 and very attractive. Meet somebody. You really need to now, but also for the long run. I think we all need someone but especially people dealing with an illness like ours. It’s certainly not easy for us with our baggage, but you never know. Go online -There are all different kinds of people out there, many who are lonely. You don’t have to meet the love of your life, but a companion would make a huge difference in your world.

I didn’t intend to be preachy. Sorry if it comes off that way. I know you are struggling with the harsh realities of this debilitating disease and I don’t mean to minimize what you are dealing with. Neither do i think that there are simple dolutions. I just hope you can find ways to cope and to make some adjustments that may imrove your quality of life.

Best,

Mike

SsandraP and Kriss66 - Your neurologist has nothing else but for there is something that will STOP your CIDP and no more IVIG ever.

I have CIDP and CMT. I am part of the 5 to 7% of CIDP patients that it crosses over into your core and is life-threatening. It will kill me if can’t find a regiment to stop progression. For the last 18 years, I spent 7 days out of every 28 days in the hospital getting high dose IVIG to slow my disease-it doesn’t stop it. My body has always responded horrible to IVIG but without it my CIDP takes over very quickly. When I tried to spread out IVIG past 28 days, only 4 days late it took over what was left of my arms & effected my breathing more. I am in a motorized wheelchair, have no sensation or movement from mid thighs down, no sensation and extremely weak hands to forearms and have partial paralysis of my diaphram that required 18 to 20 hours of oxygen daily.
In addition to my planned hospitalizations, I have numerous complications and infections that require hospitalizations as well. I spent 208 days in the hospital last year. I have had 16 port-a-caths- the last 4 have been in my thigh run up my femerol line to my heart. The 239 rounds of high dose IVIG itself caused chronic red blood cell anemia, iron deficent anemia requiring IV Iron monthly, hypomagnesium so severe required IV magnesium 4 or 5 days a month, nausea & GI issues to point needed TPN to maintain weight and more.

Then after 18 yrs, in May 2019, I had a HSCT (Hematopoietic Stem Cell Transplant) that saved my life. -This is a TRUE Stem Cell Transplant (SCT) including Chemo same as used to treat cancers.(NOT Stem Cell Therapy or Stem Cell Treatment that have no chemo & do nothing)
True SCT’s have been used for Autoimmune diseases including CIDP, MS, & Lupus for 17 plus yrs.

It has stopped my CIDP progression cold. Since the day I finished SCT, I have had no IVIG or any medication for CIDP. For 18 yrs, nothing could stop it. SCT stopped it immediately. It can stop your CIDP. Imagine a world with no meds and not getting worse.
–I have actually had some improvement as well. I can now tighten the muscles in both thighs and lift them off my wheelchair. I use my oxygen about half as much- can go 4 hours in a row without it. After being off IVIG for 5 months, my chronic red blood cell anemia and hypomagnesium are completely gone. My Iron Deficent anemia is improving and been 2 months without IV Iron.
I hope you will consider HSCT. The change is unbeleivable.
Let me know if you have any questions. I spent 6 years trying to get SCT. I have all the most recent data and research.
Keep fighting!

Susan from NC (Note-Kriss66 I responded to something you wrote with some of this info as well)

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Kris — I have five infusions in every four-week cycle — one a week for three weeks, then two in the fourth week. I can’t have infusions any closer together, not even two on consecutive days, without horrible headaches. As long as they’re separated, I have no side effects. I get the impression, from all the posts I’ve seen in support groups, that a LOT of doctors don’t prescribe a high enough dose and patients get worse as a result.

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Susan — I can consider stem cell transplant all I want, but Medicare won’t pay for it. I’ve already been told that. It costs a fortune, and I was told the patient has to spend several weeks in the hospital and only a couple of hospitals in the US do it. Was that your experience?

It is a last resort treatment for people who are very sick, getting worse, and haven’t responded to any conventional treatment such as IVIG, steroids, plasma exchange. Medicare classifies it as experimental and unproven. I don’t meet any of the requirements.

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There are additional things to be hopeful for even in the painful grips of cidp. I was at a weekly infusion of IG for 3 years then 1 year of steroids which destroyed my attitude and excited my appetite! I gave up treatment, to try and reclaim who I was before roids and try to save marriage which I did.
I went into remission and was able to stop the expansion of pain, and regain muscle and strength and some stamina.
I am still there but declining after this 11 year trial of pain, progression and permanence.
My mind went to faith and I felt healing in church. I told my wife that I felt healing in my legs. After that was reclaiming strength and maintaining all the pain of permanent nerve damage due to demyelination. I hate my myelin sheath!
Neurostimulator is best pain management ever! It greatly reduces leg pain!!! It doesn’t help my painful feet!! Just doesn’t reach despite numerous modulation reprogramming.
Daily pain is hard! It’s the hardest thing I’ve ever done and I’m still doing it.
You can improve from where you are now!!
I repeat: your current condition does not reflect your future! There is healing sometimes. Why not you?
Today I wrote a friend that I’d give up my legs or feet if I had reason to think it might stop the pain. I’m sorry for those who struggle like me. I wish we could get together and visit about our struggles. While I’m in many ways restored, then thorn in my flesh is chronic foot pain and the meds I take barely fill in the pain hole I’m in. I never feel comfortable and have to fake enjoyment to try and break out. I feel for the first time in many years that I’m losing this battle with CIDP. This discouraged me and so I write encouragement to expect some healing and tomorrow does not equal today. Pray for yourselves and believe in GOD.

Thank you for sharing of your struggle! You are very encouraging to think of potential improvement.
What physical remnant, or thorn in you flesh, did cidp leave to you? Pain, deadness, weakness? May you continue to be restored to better health and walk without pain into your glorious future!

I suggest that those interested in stem cell replacement talk to their neurologists about it. And their insurance companies. Come back and tell us what you learn.

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Thanks Mike,

I understand about meeting someone, but I feel guilty about burdening anyone else with everything that goes along with this messed up and oftentimes confusing disorder… maybe if it was just ms or just EDS… rare genetic disorder that I later learned does have some connection to the type of MS I have… but add in CIDP I feel terrible about being a burden to anyone, including family, children and other loved ones.i thought I was in a stable grown up relationship until about a month ago… he was cheating… funny thing is… I understand we alll have needs, but I believe that as adults we discuss what is and is not ok inside the parameters of a relationship… aww well. Live and learn… no we are no longer together as cheating for me is just a hard no. Anyhow thanks so much for your encouragement. I am sure one day I will have a happy ever after… even if it’s just as an educator. Kris

Sandra we have tried to go to 40 gym/ day but my body can’t handle it physically… so we resorted to a lower gym/ day and consesecutively. Sorry about the tying I can’t really see everything I type and guess…lol a lot…got to have a sense of humor or I think you go a little crazy…

Thanks

K

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I had always thought it was a permanent solution… I have been on hi dose IV steroids,IVIG. Allergic to privigin and my last resort is plasmapheresis… but have zero immune system, as basically my IVIG and my ,ms meds counter each other… I am still hoping for some thing that will help, anything…hey I got an ambulatory infusion pump because I was … nicely firm… about it…lol take that with a grain of salt. But thanks so much for you and make and Susan’s ongoing support

K

I repeat: If you’re interested in this, TALK TO YOUR NEUROLOGIST. You won’t get anything done, or learn anything definitive, by chatting about it in an online group. It’s a grueling procedure, very hard on the body (your immune system is destroyed with chemotherapy before stem cells are reintroduced) and you need full and accurate information from a DOCTOR.

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Amen, SsandraP.

An update: we’ve had a word with our medical advisor, and he said that the type of SS transplant that @Susan is talking about, while holding a great deal of promise for polyneuropathy sufferers, isn’t mainstream conventional medicine yet. Until it is, we can’t be seen to be condoning posts that promote it, or encourage members to try it.

While we greatly appreciate @Susan 's contributions, we must close this discussion and remove the relevant posts from from the record visible to the membership. Our decision to remove the information and close the thread is informed by our medical advisory people, therefore it is final and not debatable.

Thank you everyone for your input on this thread.

@SsandraP, here is the text of your original post. Would you like to restart the thread again? I think it’s one that many of our members can relate to. Either you can re-post it as a new thread, or you can let @ModSupport know, and they can restart it under your screen name.

All the best to everyone.

CF, Team Leader, ModSupport