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Living with Polyneuropathy CIDP, GBS, & CMT

Someone Who Gets It


#1

#LifeWithCIDP

I was diagnose with CIDP last November 2016. So I research browsed on an on day by day… Till it sink in me what the hell it is. Some how I realize I had it for years till it become worst and dicovered the name of it. At first I knew it was “rare” I found it cool… hey! I have a “rare” disease… Till days pass weeks and weeks of doctors check up… I end up with rehab. Which I really don’t like… I feel worst after. So I decided to stop rehab and check ups. Stayed home…

Well months pass… I am able to move well but standing up and walking still a pain and I need help. Wheelchair depended at going places.
Some how the pain never stops… all movements is painful… It feels like my whole body is brused. Numb in some places at some days. I just take pain killers when I just can’t take it no more.

The reason I found this and made an account was… I was looking for some place to share my true feelings… not just the physical pain but the pain I feel when my family… They do not understand… every time they talk to me… Making me walk excercise work… I mean those are good things for me but when they say it… they say it as if I do not do it I am stubborn… I am burden… I am useless… I can not explain to them my disease… what I feel… because they just do not get it… I am in so much pain and they do not see it. I look fine… I am able yo go to the mall but in wheelchair. My Grandma who is in the states… she constantly telling me it I do not get better she will not go back here in the Philippines. My Aunties they told me if I do not walk my Mom will not have deserved Happiness… I mean CIDP! It has NO CURE… IT IS TILL I DIE. Now I am so damaged… I am not able to walk with out help… And I can walk… they do not understand the unbearable pain with it. I feel useless… a burden…

I can not explain it to them… they will not understand. I understand they ment well for me… but it hurts me that somehow I just feel alone. Wishing all the pain ends.


#2

I hear your pain and likewise feel it too. I am able to walk with a cane but tire easily . I take 800mg of gabepentan three times a day, it controls the pain to tolerable amount . You’re right about people not understanding fully the disease. I have a wonderful who feels my pain and when I feel down she doesn’t push me. I printed out and gave websites of info to my family to read and that helped them. I have CIDDP-MGUS.I am 72 and have this for 9 years(diagnosed). My wife wrote me note after one extremely hard day. It said "DON’T GIVE UP JUST DO THE BEST YOU CAN EACH DAY’ This is what I give to you…My prayers are with you. JDU


#3

Dear Cam, I am sad to learn that your family is insensitive to your condition. Perhaps it would help if your doctor talked with the family members who are causing you this distress. It sounds like they are ignorant of the causes and effects of CIDP. It is a rare disease, and I hope you can find it in your heart to forgive their ignorance.

I believe that your family members are frustrated because they love you, but they cannot do anything to comfort you. You will have to do all that you can to educate them about the symptoms you have and what your needs are. Be patient with them for they have many fears and prejudices to overcome.

It is your burden not only to suffer the disease but to also to be the leader in teaching your family how to adjust to the way you live now. Forgive them when they are hurtful, and encourage those who make an effort to understand you. You may feel alone, but you are not. I hope you can find strength in the love that still surrounds you.

Jack Schroeder
Madison, Wisconsin
USA


#4

I am so sorry to hear about your diagnosis. Who gave you the diagnosis? What are your symptoms? Are you able to get any treatment at all? Pain meds? Anything? I was diagnosed 2 years ago after about two years of not knowing and feeling like I was dying.


#5

Cam -

I was also diagnosed in November 2016 after a long time of not knowing what was wrong. I had been hospitalized with an infection when I lost the ability to walk. The worst part for me is that I could not get any of the doctors or nurses to listen to me. They just said I was not trying or having a reaction to the medications.

The hospital sent me to a nursing home to recover from a skin graft, not addressing the not being able to walk issue. My insurance forced my discharge even with the nursing home doctor telling them it was unsafe to discharge me.

I went home, being able to walk a few steps with a walker but I found myself unable to stand up. My housemate called for an ambulance to take me back to the hospital, but they called the paramedics. The paramedics insisted on seeing how well I could walk. I said that they would need to hold on to me, but they didn’t. I dropped to the floor breaking my ankle and leg…

Back in the hospital, I hoped that they would try to figure out why I couldn’t’t walk. They brought in a neurologist who decided I had something, but again my insurance insisted that I be discharged before he could do any testing. He said to give him a call when I was given permission to stand on the leg.

That took three month, as the ankle was splintered. When I finally got hold of him, he wouldn’t take my insurance, so it became a struggle to get into another neuro. That required a referral, and it took me took me four months to get that appointment and another three months for the new neuro, which took me to August of 2016.

Then all kinds of delays. The insurance didn’t want to pay for the requested blood tests and MRIs. The EMG and NCV test were scheduled for tSept. 9th but not done until late October. By the time I got back to the Neuro at the end of November, he diagnosed me with a Demyelinating Disorder, saying it was probably CIDP and suggested that I go on IVig.

That was the real battle. I was referred to a home infusion service, but I am in a nursing home sic I can,t walk and I have no family to help take care of me. The nursing home refused to let the infusion service come in the facility. The insurance agreed to allowing a five day hospital stay, but the neuro said the facility physician would have to admit me.

Then the neuro screwed up the IVig order, which cause the insurance to deny me. He had forgotten to tell them how much I weighed. Finally got that straightened out and got the doctor to admit me. I arrived at the hospital and they demanded $1400 from me to stat treatment. Thank goodness they took my credit card.

So I had the IVig for five days with the worst part being the itching. They also did a spinal tap while I was there. The spinal did NOT confirm CIDP. That was March 29 - April 2.

I get back to the nursing home to find out they had given my bed away, which was a stresser I didn’t need. After a battle, I got my room back and the good news that my insurance was picking up the bill and I was going to get physical therapy. I had been paying $7500 a month. Things went great for two weeks until the PT people tell me they were cancelling me because “all my goals had been met” to which I screamed that I still couldn’t walk and I am still here.

I got the PT restored but the IVig had worn off as well as five days of Prednisone, which gave me some energy and less numbness. Mid-May, I had six days of Solumedrol, which helped, but the effects have again worn off. My PT has been cancelled again because they feel I am not cooperating, but they don’t understand CIPD or the weakness.

To make matters worse, my broken ankle healed with a contracute and the orthopedic doctor last month suggested that if I want to walk, I should have the foot amputated because it won’t go flat. This is because a suggest surgery last August was refused.

So I have been neglected by doctors and abused by the insurance company. I tried to get a lawyer to see if I could sure the paramedics, but four lawyers refused to take my case.

So except for the two weeks my insurance paid the bills in April, I have had to pay between $7500 and $9000 a month for my care. I am running out of money. I have been referred to the IC Irvine Neuromuscular Center and am half way through the six month wait and will be seen by them mid-August. I hope my money doesn’t run out before then.

I am afraid that treatment delays will prevent me from ever walking again. If I can’t walk, I can’t go ho,e. At home, I have my 91 year old housemate who is a wonderful guy but he can’t take care of me. Living in a nursing home is a living hell and I want out. I see the neuro next week, but he doesn’t seem to want to treat me until the Neuromuscular Center sees me. I am very frustrated.

Cam - you are so right that no one understands. I can’t even get medical people to understand the weakness and the pain. I want to participate in PT, but I hurt so much that I am in tears in the middle of the night and can’t sleep. I have spots on my body even the slightest touch is very painful. I was very numb until the steroids, but returning feeling is just pain. With no family to fight for me, I am just being neglected. I go back to the neuro next week. If he doesn’t order more treatment, I don,t know what I will do. The steroids have raised my blood sugar to the point of needing insulin, so something else needs to be done.

Just try not to get too frustrated, but I can tell you that is the hardest part when people don’t listen and try to understand.


#6

I don’t knpw if I can add anything that already hasn’t been said, my few friends now, my nieghbours, and a very few others that I know, know I have a rare disorder, but other than that, they have no idea what CIDP is like, all I can say is here you are not alone, Gary Springman (email removed by moderatory support)


#7

All the response made me cry… Thank you! It felt good to know now "Someone Gets It"
It felt good because some one though I did not know who still understands.
Who did not judge me or says otherwise. Who has no question about the pain because they get it… feels it all day long. Thank You to this site… I am able to contact with some body or some one who could actually reply. Not easy right… Especially that no matter how you explain or even give example of the feeling… They just fine so do this do that… as if it will cure this disease. Well no matter what happens all I could do is to BE THE ONE TO UNDERSTAND… Live on with this. Thanks to know all who is here is with me.

@jim3
Thank You for sharing your story with me. I have a cane too but same with you I tire easily too and sometimes my legs fold weak and it is really hard to get up… But I am trying my best with the cane. For me somehow it is pointless to give out info printouts or site to my family… sorry it may work for yours but my family they are too busy and CIDP is too complicated.
I live only with my Mommy who tries her best to get what I feel… Hope we can get through this with our love ones who truly feels our pains. Thanks again jim3!

@alljack
Dear Sir. Jack Schroeder… Thank You so much for understanding me and how my family sees me with this CIDP. Thanks for the encouraging words… I love my family. I am not really mad at them… I am doing my best to understand… sometimes it just hurts. Because no matter how I explain they do not get it… they do not feel the pain. Then sometimes I just find it pointless to explain… Because out of respect of the elder I can not answer back or question what they say to me or force me to do. All I was just wanted was to them to understand I have a disease that is painful when walking getting up moving. I am weak not making any excuse and I am trying my best for my self and doing my best to make my Mommy happy with me and that though I am not walking I am still living.

@Sean
Thank you as well… We both do feeling like dying… I felt better dead than to live like this. Find everything so pointless… After one physical rehab I just stopped the check up and had over the counter painkillers or paracetamol. I just can not take the rehab… and well… financial problem… we are not able to afford the check ups and the Nero’s suggested tests and medication. So not just pointless actually pennyless.

@LMayberry
I read your story… same… about being hospitalized first. My first was because of my apendix blow and had to sugery took it out and clean my internal. Then few months… had trouble walking… pain at lower back. Xrays and Rehab. But I did not last with the rehab NO one gets the pain with the excersis they make me do… I even cry at rehab because I really hurt what they are seems forcing me to do that is why I stop. Years pass I was not able to walk well… I had to have something to hold on because it felt like I am falling and body pain. Then I was hospitalized again now because of dehydration. Got dizzy… black outs… whole body numb… can’t move my legs and its blowted… Till I was out I was not able to walk because I can not feel the lower part of my body everything was numb and like needles. I had a Nero to check… I had EMG-NCV too which diagnose me with CIDP. Then I had the research and all symptoms match with me and months pass other symptoms I read occur as well. I got so scared to read on yet somehow I want to inderstand and also know my options.

The last check up I was suggeted the spinal tap and byopsy at the ankle. But since out of the financial issue… I told my Mommy for us to just to not go with it and just let me try to work on trying with her help me getting up pushing my self up then with the cane and well come what may days. We even had to borrow a second hand wheelchair for us to go out. I get the pain with the money issues.

You are still about lucky you had the test and medication… I get the financial issues comes with this “rare” disease.
Felt good to know someone else know how it feel when NO ONE ELSE AROUND TO LISTEN what it trully feels or know. At least here someone gets it right LMayberry. We can listen to each others story… Thanks for reading mine and I’ll keep on reading yours.

@springmang
Dear Sir. Gary Springman
Thank You for the reply… Thank you for making me feel that at least here… I am not alone with this disease. It is so “rare” even who gets it is rare… not even said “expert doctors” who studies CIDP will never ever get it! Not unless this “expert” or even the Neuro HAS CIDP. Right!? Well all they know it the symptoms… and way to ease or reduse the pain but as I search on it CIDP has no cure not even a cause. Not sure just few what I get online.

Even I can find a doctor to help me with the pain management… we can not afford. So I guess for now with this group chat helps me emotionally. Thank you for everyone… everyone who gets it!


#8

All I wanted my Family is to listen…

I’m lying ALONE with my head on the phone
Thinking of you till it HURTS
I know you hurt too but what else can we do
TORMENTED and torn apart
I wish I could carry your smile and my heart
For times when MY LIFE FEEL SO LOW
It would make me believe what tomorrow could bring
When today doesn’t really know, doesn’t really know!

I’m all out of love, I’m so lost without you
I know you were right believing for so long
I’m all out of love, what am I without you
I can’t be too late to say that I was so wrong

I want you to come back and CARRY ME HOME
Away from this long LONLY nights
I’m reaching for you, are you feeling it too?
Does the feeling seem oh so right…
And what would you say if I called on you now
And said that I CAN’T HOLD ON
There’s no easy way, IT GETS HARDER each day
Please love me or I’LL BE GONE, I’ll be gone…


#9

Oh Cam, thank you for sharing your poem. You are not alone, we are here for you and we understand what you are going through. I’m passing along a virtual hug!

I don’t know how your medical system works, but what treatment have you received? Is there any support for you?

CG


#10

Beautiful words Sir x


#11

LOVE this song! Even more so now :blush:


#12

Hey again, Cam! We see that you are in despair, and our hearts go out to you. As you can see from the other replies, despair comes in many forms among your fellow sufferers. I have a couple of suggestions for you to think about.

You might try to involve your priest or clergy. They are in the business of helping people who suffer, and they may bring some comfort for you. They may even talk with your family to help your elders to better see and understand your condition.

I have found that marijuana is helpful for me in dealing with my pain. It doesn’t remove the pain, but it does make it reduce the pain and make it easier to manage. Your president Duterte has shown approval for medical marijuana when he said, “. . . it is an ingredient of modern medicine now.”

Your legislature is considering House Bill 180, of which co-author Leah Paquiz, said “We are at this stage, we have Filipinos who need care, we should give them compassionate care - this medical cannabis. There are a lot of medicines, but they are expensive.”

You might want to contact Ms. Paquiz, since she seems to know about people in your situation, and has goodness in her heart for you. All my best to you, Jack


#13

Well taking it one day at a time I guess…

@CanadianGirl
Actually… That was a song “All Out Of Love” I listen to it when super down. Which lyrics does fit what I feel over this CIDP Pains and my feeling with my family. Alone… Tormented… Lonely… Can’t hold on… Gets harder each day… Wish to be gone.

For your question… well I stopped the check ups and rehab… The last plan of my Nero for me was the byopsy and spinal thing. I had one rehab session… I ask mercy to my Mom not to go on it… it was unbearable pains after. Then we did not go through the treatment and check ups because we are not able to afford it. Though we can go by in our needs the suggested treatment is too expensive for us. So now I just do my best to take the pains and when it is torture I take over the counter pain killer meds.

@Kellsk11
True… Good Song indeed.

@alljack
I read your message… Thank You!
Thank you for your suggestions.
About the marijuana… perhaps our President has it approved to be medically helpful. I don’t think I would be able to avail that locally or even in the market or even sold in drugstores. Thank you but here… now… marijuana it may make me feel at ease from pains but I might end up in jail or worst Mom will kill me. Heheh! Tempting though…

Thank you everyone for making me feel not judged stubborn or a burden to everyone around me… like as if I don’t listen to the elders or disrespecting when I am not able to do such as walk get up work excersis travel. Some how now am still managing my body pains emotion or how to go by each day. Be more understanding and just come what may days. Thanks to this I could let out my story and my feelings free. You all get it right…


#14

That is ALL we can do :+1::blush:. Stay connected with other people who truly
understand you and your condition and you won’t feel so helpless, I promise
you xXx


#15

Hi all, I appreciate the posts. I just had my one month GBS checkup and it was discovered I am relapsing again. The is the second relapse since diagnosed in Match 17’. I was so discouraged because I was doing so well strengthwie. I was just dealing with numbness in my arms and legs. So I will be having plasmapheresis every othe day for the next 10 days. I finally accepted the fact that I am chronic (CIDP).
I am not sure what this means and there seems to be a big question mark in what my life will look like going forward. I am a high school teacher and not sure I will be able to return to work in Sept.
It seems like I am looking at least a year of recovery, is that a fare assessment?


#16

I completely understand about the lack of understanding. When this first happened to me, I had very little medical support. Ended up, I had what was believed to be the Miller Fisher Variant of GBS that began in June of 2014. My initial doctor thought it was anxiety and I was making it up. I felt so alone and scared. My family finally came around but they just did not understand at first. My symptoms sounded crazy to them and they could not see them. I felt that the doctors should have known better though but you can’t let them bring you down. This site is great because there is so much support and knowledge from others with similar experiences. I have been inspired by so many here who persevere. You are definitely not alone so keep reaching out. With the help of so many here, I was able to find positives during my struggle that made me stronger when I was weak. Hope you find treatment that will help and the support that you need. Just know that sometimes it takes having experienced something like this to really understand. And you are not alone here.


#17

From all that I have read I dont read about anyone that is healed in less than a year, that is why i asked if that is a fair assessment. Does anyone know if this can be cured in less than a year?


#18

@Apyper65

Cure? As much as I have searched online… Nope. CIDP has no cure… That is what I really wish my family get. That this is till my last breath. What hurts more is when my family get bitter at me when I don’t do much. Not getting it how much it hurts the unbearable pains what ever I move or not even moving I have body pains. Somedays I have highlights… Like besides the body pain… Plus headaches stomach pains allergies and clogged nose. All that at the same time some times for a week. Well… How I can explain it to others or family is a struggle.

@Tarhealing
Thanks You get it…
We can get by here… sharing stories and feels. Wish I have means of making things better… like afford medication and treatments. Well perhaps if my family someday get it.

Had a really bad weeks… Highlight! All the “aches” from the head down to my tiny toes. Clogged nose to runny… Head aches like I hit… stomach pain since I have history of ulcer and gastro. Torture legs and niddle feet all numb. Well some time I ask for my death. But must a straight face like its all nothing… Weeks of assorted drugs like we are in a pharma store. Some how… some days at ease. Sleeping doesn’t help coz I can’t I doze a while and pain wakes me. Ohhh… Gosh… what a week. Thanks to this somehow I think in a while I forget something hurts.

Good Luck to us all CIDP Buddies.


#19

Everyone here knows what you are going through. Many people here are suffering with both physical pain and psychological pain of living life like this. I am one who has had a lot of trouble accepting that this may be what the rest of my life looks like. But there is also hope, and some people will tell you they feel better these days than they did before thanks to finding the right doctor, treatment, or whatever. Also, as with many autoimmune conditions, there is no cure, but CIDP can go into remission. My doctor tells me this, and I am slowly weaning down my IVIG treatments. When I feel better I am happy, but when it hits me bad I go into depression. I wish you lots of luck. Right now you need to find a doctor that will help you get the right treatment and who will work with your insurance. Best to you and hang in there!


#20

Thanks for the input. After 9 plasmapheresis treatments I am back on my feet again. I will continue plasma treatments twice a week for the month of September then maybe once a week after that for a few months.
I have begun taking a drug called cellcept that is supposed to lower my overactive immune system and hopefully after six months this take over and I wont need plasma treatments.
Fortunately I do have a great doctor and good insurance for now. I have a year to get well enough to return to work or will be terminated. I will keep insurance for one more year. Not sure what happens after that. Looking at different options.
Hope all are doing well today.