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Living with Polyneuropathy CIDP, GBS, & CMT

Life Expectancy


#1

Good Day! (Hope we have)

I had searched online/sites as much I can… as CIDP is “rare” seems the answer to questions (mostly diagnose with it don’t like to ask) is so rare as well.

Life Span? Life Expectancy? of like me diagnose with CIDP. How long is the suffering?

I know my life’s been swell I’ve been treated well
For ones I just want to be brave.
It is not to scare my self my love ones or either every one here. I understand how sensitive this topic is. With all this torture suffering and pains physically and emotionally. Somehow I am up to expect something.
I am anxious and envious of people with CIDP living up to their dreams, with a life or evens so most importantly with people around them who “gets it” who does not judge who does not question or even see you “fine” and thinks that if you stays home thinks I am stubborn or useless! It hurts more how I feel being like a burden to my family…

Perhaps it coms difficult too when financial problem drown you too… some how everything is pointless… pointless… endless questions… endless pains… endless reason to live. But never worry not brave enough tortured pain every days fear me mask the bravery to do so.

That all may sums up the feeling to ask how long… How long!!! Why me… Why us…


#2

Hey Cam,

I don’t know how GBS or CIDP will affect the length of someone’s life. There are many factors you have to consider. But most definitely your quality of life will be affected. Fatigue and weakness is my downfall. I can only do manual labor for a good 30 mins to an hour then I have to rest. And then the sweating begins. My feet up to my lower thighs feels like they just ran 5 miles. I would assume due to my lack of activity, my life expectancy will be shorten a bit than had I not come down with GBS.


#3

@Spencer

Hello Spencer…
As much as I understand that GBS is worst than CIDP. But seems both diagnose with those are having a hard time to do much than regular. With all the pain and weakness. It is good to know you still able to work/labor. Unlike me… every one around much my family sees me stubborn useless. Up to tha point I see my self useless as well and life pointless.

That is why I have in mind to ASK HOW LONG… but really wishing enough please. I beg heaven please take me… Not because I am suffering with CIDP but how I see my family suffers for I am a burden. Please… Please…


#4

Hello Cam,
I have had CIDP for 18years. I have been married for 27 years. The guilt of being ill for 18 of the 27 has taken its toll on me. It has also taken a toll on my husband to the point that he had an affair last year. It was an emotional affair because our life was so focused on “me” and my illness. He was never nurtured like a husband should be. Still doesn’t give him the right to have an affair though. I also have 3 other autoimmune diseases. Once you have one you are more apt to get more.
I have been paralyzed from the neck down. I have been in a wheelchair for six months. Have used a walker then braces on my legs. I have been a burden to my family that is for sure!! But, they love me and have taken care of me when I needed them.
Now I am totally normal looking, walking and I take care of them the best I can. I have a lot of nerve pain. I just went through this past winter, detoxing from 150mcgs to 37mcgs of Fentanyl Duragesic patches. The hardest thing I think I have ever been through.
I have my good days and bad days.
One thing I think you might look into is an antidepressant. That just might help your moods then once that gets better sleep, eating and so on will get better. Once all that gets better you will feel maybe more like yourself!!
I just started on Viibryd because I have been depressed because of what my husband did. Who wouldn’t. Not sure what to do about that yet. But when you are under so much stress for so long, like me, (18 years) you depleat all your seratonin, then your melatonin is all depleated (that is why I need Lunesta to sleep now). It is a domino effect.
I am not a doctor obviously but I think it might help. Just a thought.
Also, speak with your neurologist. If you have a good one he/she will guide you the right way! My neuro has been my life saver. If I didn’t have him I don’t know where I would be.
Take care of yourself. Your health is your number one most important thing for you to focus on. By having a supportive family is key!! Don’t take advantage of that though!!
Best of luck!
Shannon


#5

Your symptoms of CIDP are very similar to my husband’s. He has been afflicted for one and a half years. What exactly did your doctor do to get such amazing results. My husband is also on175mcg of fentanyl patch and gabapentin. He has an IVIG infusion every two weeks but he still can not walk, his upper body is weak and so are his fingers and hands. He is on antidepressant also. Any information would be helpful. Thank you!


#6

I am so sorry to hear about your husbands condition. You didn’t mention his age. When I was diagnosed I was 36 and at the time in the best shape I had ever been in. I think that really helped me.
Has his dr ever mention an immune suppressant? Like Cellcept (mycopholate) spelling could be wrong. Also, the best way to take care of the bad antibodies is to do plasma pheresis. If they do a round of that for about 6 weeks it really has helped with my flair ups. It is a tough schedule though. Two to three times a week and it does wear one down. It is like dialysis but only takes about an hour depending on what you weigh. Your husband needs to get a subclavian catheter. If he has a port now that wouldn’t work because the port is too small. You need a catheter that has a tube that takes the blood out and a tube that returns good antibodies.
I am not a dr but I have lived with CIDP for so long and have done everything.
I did need to do chemotherapy for 7 months when nothing was working. They used Cytoxin and Rutuxin. That was 17 years ago. That helped save my life. They totally destroyed my immune system so I could start over.
Also, is your husband getting physical and occupational therapy?
If you feel your dr isn’t giving enough options seek out another one. It took me 7 tries to find the right dr when I was first sick. A lot of them said they didn’t know what I had and kept referring me to other neurologist. When I moved to Az it took me two years until I found my hero!!
Best of luck to your husband and you. You have the hardest job, caregiver.
I will pray for you both!
Shannon


#7

Hi

Well its all about PAIN. How long is still every ones question. Some how if only I can able to afford I’ll take all the chance… but now all I am looking forward to us the end… my end.
Good luck to who ever is up to searching the cure.
Hope we meet before my end.

Thank You for sharing your story. If only there is a cure to CIDP (I can afford) Heaven knows.


#8

Clinically speaking, Less than 1% of people with Guillain-Barre syndrome experience long term complications, and even fewer die early as a result . CIDP is a bit different 90% go into some level of remission within 5 years after treatment starts These remissions usually make treatment unnecessary for at least 2 years. (about 13% had disabilities as a result) The disease itself does not peak for most until the 7th decade of life which pretty much gives a “normal” life span.

There is an older but interesting study:


As a general rule of thumb its considered that most immune disorders only shorten life span by 5 years.

Quality of life is another matter and is pretty subjective…

TJ


#9

Do you think you may be projecting your thoughts onto your loved ones? ‘I’m a burden’, I’m
Useless’ etc?

You are a man with a debilitating disease.

You are the same ‘in the inside’ as you were b4, right?

Be YOU! Wonderful YOU! who happens to have an illness! I’ll be praying for you…


#10

Hi Cam, you are the first person to say what I am also feeling. The pain is non stop, and it gets really hard to keep going. Those of us that are struggling often think about our quality of life, and if it’s worth it to keep struggling. I can still take care of myself, at this point, but am realistic about what the future may hold. I can relate to being ready for the end many, many times. Thank you for being strong enough to say what a lot of us are feeling. Prayers and peace to you! Jack


#11

Hi

It has been a long time since I check in this site. I had sufferd much more than before.

With CIDP I could had ever imagine to have a flu this much torture. Like I just want to kill my self. Punch and Torture all over plus headache and sore. Can’t eat… can’t sleep… I had enough. With my pain is seeing my Mother hurts too to see me 10x the pain
Having a abnormal immune system it is a scare to have flu. 100x the body pain and torture on CIDP.
Somehow I notice that over the counter pain killer works less and we can not afford hospital help.
I may just wish to leave this sick body soon.

Why me… :cry:


#12

Hi Cam,
I was hit with a terrible flu this year as well. It lasted over a month! I have CIDP and MCTD. I thought I was going to die. I have never been so sick in my life. I couldn’t eat or drink and ended up in the hospital. The Doctors thought my cancer was back, thankfully it wasnt and just the flu. I tested positive for both flu viruses at same time. I couldn’t walk or even talk I was so ill.
I am so sorry you are dealing with this. Know you are not alone. Many of us are sadly in this position. Having no immune system is horrible making us much more sick then the normal Joe. I’ve been dealing with back to back flare ups since, only getting maybe a week break in between. I wish you all the best and pray you feel better soon.
Nicole :slight_smile:


#13

I always wonder why God created this disease… Always asking why me… Even if I am not the only one dealing with this. Even if perhaps other have worst.

Since its here and its real…
I wish it is easy to explain this CIDP!!!
Like when someone ask… “Whats wrong?” “I have Diabetis” or "I have Canser in… " then they say back “Ohh Okay” They get it!

But for us… “Ohh why are you in a wheelchair? Whats wrong?” I’ll hesitate to reply then say “I HAVE CIDP” every time! “Huh!? Whats that?” Damn! Just Google it! Ha… Then I just think canser perhaps better off for me at least I have a dead end soon and soon end torture. Not CIDP made torture with no end. Unless I end it now… Hmmm…

Why? Never end of questions…Never end of torture and pain… :frowning: :’(

Hope you all who read my messages forgive how I express… forgive me that I am not that positive or uplifting to other who may read…

Somehow ever since diagnose… I always feel alone even if I am seem fine to my family. It is really really hard and add torture to express. So I soak up my pain here like I know you all get it. I feel soooo much PAIN in mind in body every second.

God please… I really had enough and let me rest in peace now.