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Living with Polyneuropathy CIDP, GBS, & CMT

I am sooo tired! Not quitting but advice.. pls!

I can’t recall the last time I felt like this. I currently have a dx of CIDP; seizure activity; and aggressive MS , just a not- please don’t tell me you can’t have both CIDP and MS - you can.
I teach HS science and also own a small business. I love my students but truthfully I am lonely- I smile but inside I feel like I am about to loose my mind- I keep it to myself to avoid upsetting others.
I have a partner but we are more roommates than anything wand that am at my end of pasting a snails :snail: n my face and pretending everything is ok.
I wonder what it would be like if that’s simply stopped- stopped taking the meds, stopped pretending I’m happy, stopped being roommates.
The only thing in life I really enjoyed is teaching but even that feels lonely- you spend 8 or more hours with someone else’s children but watch and know you can do nothing even if they really need you.
My body is tired , my mom Nd even my spirit
How do you cope when it never seems to stop

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Hi there @Kris66! You are definitely dealing with a lot. I’m impressed that you’re working full time and a business owner. But it sounds like you’re not doing a lot for yourself. Do you have any interests outside of work?

Have you considered talking to a professional? It’s a lot to deal with, especially when you add in a partner who sounds like they’re no longer really much of a partner.

Sharon

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I also have MS and CIDP. Yes, it is possible. It is really difficult to push yourself to keep going as there seem to be more and more obstacles thrown at me all the time. Have you changed your diet at all? My sister has MS too and started a very strict diet and it helped her so much that I started it a year and a half ago. It has made a difference for me. I miss getting the exercise that I used to get, but I try to walk a lot. I also have a great group of doctors that take care of me and make a nice balance of medications for me. Do you have someone to talk to as in a therapist? That helps me when I am down. I also understand your “roommate” situation. I am in a similar state there too.

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One painful breath at a time, sister. You are not alone. We are suffering with you. The world is filled with healthy, shallow, ungrateful (at times) people. The world needs people like you who care and understand true suffering.

I extend my deepest sympathies to you for all that you are enduring, you are giving so much more than you know. Sometimes givers forget all about their own needs and neglect to put self on the priority list. I may not be able to offer a concrete pathway to you and for your unique circumstances, however, I just want you to know that people care about you and you are not alone in this world. You may message me if you feel like you need somebody unbiased to listen. Sincerely, from Texas

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Thanks for responding and for caring. I work because I simply feel useless if I don’t and honestly I am a very good teacher- I use my business as an outlet for creativity and also donate to charities that are important to me.

I have tried speaking with someone a couple of times but I am the type who wants solutions not to rehash the horrible things in my childhood- so lately no I have given up on therapy

Thanks for everything

K

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Sandra I thought that my business was me time to be honest but maybe I got that wrong… thank you for both listening and offering advice

Kris

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You haven’t laughed your best laugh, sang your best song or thought your best thoughts. Let your faith be stronger than your fears.

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Kris,
Frankly, I can’t believe you are doing all that. When my CIDP was so bad I had to scale back on my position at school. At one point, I was on disability. I went to a support group with other CIDP patients. We brain stormed and shared things that helped. I used a scooter for awhile just to save energy in my legs. I definitely rested every chance I could. Resting is not lazy it is part of your recovery. We are hear for you.
Mary

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Have you thought about HSCT. I had it in 2012 and am still off DMDs. It did not fix the damage already done but it did stop the progression and helped with fatigue. There are FB pages dedicated to it. Check one out.

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Hello Kris66. There are no ‘pat’ answers for what you are experiencing. Each of us has this ‘journey alone’. While others may support us, and even if someone has your exact dx only you know how you really are going. For me, the best thing was when I ceased work … no longer did I have the pressure that went with it. This aided me. My four weekly IVIG and ongoing Lyrica keep me going - but it’s never easy. Life is now different and I’ve had to accept this and now find joy doing things I never did when I was well.
Wishing you blessings … always. Jokhere.

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Hold on a little longer. I have something that may help BOTH your CIDP and MS.
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.

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 AND MS. Imagine a world with no meds for either disease 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.
I hope you will consider HSCT. The change is unbeleivable.
Keep fighting!

Susan from NC

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Kris,

You are so awesome to continue your own fight, while teaching kids & contributing your gifts to the world! I have CIDP and continue to work, but don’t have the MS double-whammy, and can’t even imagine…In what part of the world do you live?
Curtis

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There are definitely different types of therapy. I’m thinking more about cognitive behavioral therapy, which is a way of reshaping your thoughts. That is typically more forward facing.

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First, hang in there! It can get much better. I was diagnosed in late 2009. In the first year, I was hospitalized three times - twice I had to be carried in, because I could not even stand on my own. Now, I lead a pretty normal life. Yes, I am weaker than I used to be, I get tired easily, and I have to budget my energy, but I can do most things that I want. One day on vacation in Canada , my Fitbit told me that I walked six miles. I can remember when it was a major accomplishment to walk 100 yards, and I would never have believed that was possible.

Now, my real advice. This is going to seem counter-intuitive, but I am going to suggest starting an exercise program. What I realized after about the first year of my CIDP was that, yes, I have nerve damage, but in addition to nerve damage, my muscles had largely atrophied away because I had been so inactive. So, I had what I referred to as the double whammy - damaged nerves PLUS weak muscles. I couldn’t do much about the nerves, but I could work on recovering muscle strength.

So, I joined a gym and started a regular exercise program. It was very slow going and frustrating at first, but I kept records of exactly what I was doing each time. I realized that my abilities were slowly getting better, which was a great encouragement, so I kept at it. I now go three times a week, religously, and I try to do something else physical on the off days. I had one really bad relapse about two years ago, but I have now largely regained the strength that I lost at that time.

I suggest you start by checking with your doctor, and asking him/her to prescribe a few weeks of physical therapy. The therapist can assess your condition, determine what you most need, and teach you the appropriate exercises. Then, find a gym where you feel comfortable, and work out your own exercise program.

CIDP is a very pernicious disease, so I wish you all the best in your journey. Keep fighting!
Bill

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Hematopoietic Stem Cell Transplant for CIDP has only been in a very few trials and where it has been succesful for MS and a broader trial is now being funded by the MS Society it is a long ways off from bing main stream (are insurance covered treatment. Sadly the early trials have reported less than a 68% success (which in endstate disease is pretty darn good considering) but less succesful in each o those studies than medications. Zero effect on disease older than 10 years. Certainly worth looking into but…

TJ

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Thank you for posting this. People need to talk to their neurologists, who have all the latest information, before getting their hopes up.

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The National Multiple Sclerosis Society, which funds research studies, describes the HSCT process on their website. (See nationalmssociety.org for a full article on the topic.)

. What is involved in the HSCT procedure?
A. While the general approach is the same, there are different treatment protocols that vary depending on the medical center and doctors performing the procedure. In general, these are some of the steps involved:

  1. ApersonundergoingHSCTtotreatMSisgivensomeformofchemotherapy,
    usually by infusion in the vein, for up to 10 days (usually as an outpatient) to stimulate the production of bone marrow stem cells and promote their release into the blood. Then some blood is drawn from a vein and the stem cells in the blood are stored for later use.

  2. Thentheindividualisusuallyhospitalized,andgivenapowerfulmixof chemotherapies for up to 11 days to kill or suppress immune cells throughout the body.

  3. Thestoredstemcellsaretheninfusedintothebloodstreamthroughavein.
    The goal of HSCT is to reset the immune system and stop the inflammation that
    contributes to active relapsing MS.

  4. Theindividualisusuallygivenmedicinessuchasantibioticstohelpcombat infection.

  5. Thepersonremainsinthehospitalforanadditionalperiodoftimewhilethe immune system begins to rebuild itself. Sometimes individuals are discharged from the hospital in two to four weeks, but this can be longer. In a recently published Canadian study, the hospital stay after transplantation lasted 10 to 160 days, depending on any side effects experienced.

  6. Theimmunesystemgraduallyrebuildsitselfwithin3to6month.

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Curtis, if you click on Kris’s avatar (picture) up will pop her profile telling you where she lives and a bit about her story. This board has all kinds of nifty features like that!
Seenie

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