Isolation

Try http://www.livingwithpolyneuropathy.org

I just registered and received the following:

Welcome to Living with Polyneuropathy CIDP, GBS, & CMT!

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try twitter with the #cidp hashtag.

That way you can filter out the crazies while hopefully meeting fellow suffers.

You can also try: https://www.facebook.com/gbscidp

I am on three private Facebook pages for CIDP. All have been active in the last week and two of them have new posts daily.

One is called CIDP, one is called GBS/CIDP Exercisers and the last is called GBS/CIDP Soundboard. All require admin approval so that they can maintain everyone’s privacy.

Sandy-

Isolation is a huge problem for me. I have spent the last 21 months in hospitals and nursing homes. I was in private rooms while in the hospitals and my nursing home roomies have been most non-verbal or non-English speaking. I have no family in the area and only my 91 year old housemate who can only visit me weekly, if I’m lucky, since the only nursing facility that would take me is miles from our home.

It has been an on-going battle to get proper care, and my condition has declined to where I can’t walk. Before I was diagnosed with CIDP, I had a broken ankle from having the paramedics dropping me when they were called to my house because I was too weak to stand up. Complications do to nerve and muscle weakness have led to a contracture. The ankle is turned in and the ortho I saw last month said I should have the foot amputated if I want to walk.

But extreme weakness and dizziness are also keeping me from walking. So I am stuck in my bed with very little interaction with anyone other than phone calls to the housemate. I am so afraid of causing him distress by burdening him with my problems, I just wind up crying in the middle of the night. My level of frustration with my lack of medical care is really getting to me. My physical therapy was just cancelled again on Monday, my one and only IVig treatment was two months ago and the steroids have helped but have made me insulin dependent.

I just want to be able to walk enough to get to bathroom so I can go home. Today, I will have to pay another $7500 to stay in the nursing home. That exceeds my monthly income by $2000, so I can’t do this much longer.

Mid-August I have an appointment with the UC Irvine Neuromuscular Center which may help get some treatment, if I can last that long. I wonder how many of the patients die before their appointments?

LMayberry,

Your story breaks my heart. It sounds like you need an advocate. Could a family member step in? I know you don’t have anyone who lives there locally, but perhaps something could be done by phone? Or maybe a social worker or the local liaison from the CIDP Foundation? If you’re paying that much for a nursing home, it seems you should be getting regular therapy and also participation in group activities in the common area where you could meet others. Best of luck and I’m thinking about you.

The only family I have is a brother in Oregon who has enough problems of his own. I have a nurse advocate with Blue Shield but she can only act on doctor’s orders. BS did pick up my nursing home bill for a couple of weeks after I got out of the hospital in April for IVig.

I only get out of bed for showers and doctor appointments. I don’t have my own wheelchair, so I have one to use that no one else wants. I just purchased a leg brace and have started to stand, but it is very painful. When the ankle was broken, I really never had much pain due to the numbness, but standing the last few days has caused some intense pain and from what I can tell it is at a point where a plate and screws were put. I had no idea because I couldn’t,t feel it until a couple of days ago.

I just turned 63 a couple of weeks ago, so I am about 20 years younger than most of my fellow residents. Not much chance of socializing. Most of my friends were from work and I have only had four of them visit me in the 21 months. I retired as a computer technician less than two months before I got sick because my eyesight was getting so bad I could not continue.

On the good side, when I applied for SSDI, I got immediate approval. I am hoping that my situation gets better after the visit to the UC Irving Neuromuscular Center. If they confirm the diagnosis, the battles might get easier. Next neuro visit is June 15 so nothing will happen until then.

Hi Sandy,

Please know you are not alone. I was diagnosed with GBS 8 months ago, although I now think (again) it may be CIDP. Confirmed yesterday by an audiologist that I have a damaged nerve in my right ear, it’s been ringing for a few days. At least you have your husband… as I was going through GBS my husband thought I was making up all of my symptoms (even though I had confirmed NCS showing demyelination, reports from my neurologist stating GBS or CIDP and visible symptoms) and decided to yell at me every night, have an affair and leave me with our two young children. I’m 39 and often wonder what the future holds. Also in the process of selling our house bc we can’t afford it and trying to move. I worry about being able to hold a job down, get insurance and raise a 5 and 7 year old. No family close either. It is isolating – I have a neighborhood friend that always asks me to go for a walk, thinking I just need to get active to feel better. No one understands. I have a neurologist appointment tomorrow to address the ear ringing, but I have low hopes this guy will do anything. I had my PCP submit a referral to the U of Virginia and they said they would not accept me. Not sure if it’s because they thought I had GBS based on my doctor’s notes or what, but they lady I spoke with said that they cannot help me. So here I am, no one at all to help. Not even a Center of Excellence will help me. I’m thankful for this forum and everyone who helps (Jim!) and wish everyone the best! We all understand each other and that helps.

Sandra:

It is hard to find a person or persons who really know what you are experiencing. The GCB/CIPD was great for me when my husband was first diagnosed with GBS and now we find out it is CIDP and that was only because we went to University of S. Florida in Tampa as we live in Ft. Myers. It was a awful 62 day hospital stay then 6 weeks of rehab, he has progressed about 89%. But there are days that I wonder to if this is a relapse, like this morning, pain, the pillow feet, more back pain than normal, but to go to our local hospital would be a joke, I would rather take him to our VET. I too and still trying to find out what to look for. Everyday he has stomach aches, migraines and more and I feel that he is getting worse, but our appt. in Tampa is not till July 11th,. Yes we have a local nuero, but they have no clue, they want us to come in to see them every time we go to Tampa to find out what the experts say! I should give them the bill!!!!!!!!!!!!!! You can always e-mail me at sjwaddle@comcast.net if you just wish to chat. One thing I have found, this organization put me in touch with a person in Sarasota, WHO only called me back once! So much for the support. I have signed up for a patient liason yet I have not heard back from this women. BE STRONG AND FIGHT! You have it in you, deep down inside. This has put my life on hold and ruined many aspects of our life.

Hey everyone,

I could very much relate to these posts. They are all very sad stories. I am lonely and isolated and I feel like no one really understands. I spend a lot of time on the internet searching for support or things to do, sometimes not even related to CIDP.

I joined Meetup.com with a very hopeful heart. 90% of those Meetups in my area are for activities that are very strenuous for me, like hiking, jogging, etc. I have physical limitations that I need to accept and getting out and hiking four miles in a woodsy park is not going to happen.

I am also very unsteady on uneven surfaces so those things wouldn’t work!

I wish I could make friends. I don’t work, I’m on disability, so I have a lot of free time. I am taking an online class starting in a few days. However, I need more friends I can just call and chat with and grab a coffee with. When I call the people I know now, they make sure I am not in a crisis and hang up.

I have two good friends I live with, but they are married to each other, work, have lives, etc. My best friend(one of the women I live with) cannot be my only person forever.

Maybe we can start individual posts for our areas? Are we allowed to do that?

LwOLF

I know what you are feeling. My husband is the one that was first GBS then now it it CIPD. He was just in again (hospital) in our area what we KNOW it was a set back, they put him into observation for 36 hours and off he went , HOME.

Isolation feeling? YES for him and I. My fellow co-workers don’t understand nor does anyone else and I am dealing with my own health issues, not anything like yours, I feel last year, broke my knee, still having problems, was doing GREAT, till my check up with ortho, and that doc screwed up everything. Trying and praying to start a new job here but having a problem standing and walking.

It seems like when this happened to him, he got hacked on the computer. 22 former patients of this hospital got hit, bank accounts, investment and more. Not all was recovered.

He too is having more and more problems, we are going to Tampa NEXT Tuesday to our other nuero doc WHO said it is CIDP not GBS. She seems to know what is going on.

Are you getting monthly infusions? This is one thing our local nuero doc stated about.

If this foundation does not provide a site that is private to those WHO HAVE THE DISEASE them I can stand up and form a blog just for us. You have my e-mail, keep in touch. Where are you located?

They offer liasons in or around the area, mine was worthless! I am hearing that this disease is on the rise.

Hang in there, if they do not have you on an HAPPY PILLS (NOT PROZAC), get on one. He was on one that worked miracles at the hospital but it dried his mouth out so he quit it, they tried 2 others and he threw them out. One thing I am going to ask about next week in Tampa. He does need something, he is also on disability but does FORCE himself to work in the yard, but he pays dearly for it. His attitude is “this is not going to get me” but everyday it is something new that pops up and we don’t know if it is a false alarm or the disease. No TRAINING AT ALL!

Hugs to you, sorry doing this without my glasses….not a good thing! LOL

Hi LWolf,
People sure can be odd creatures. That part about making sure you aren’t in crisis and hanging up…made me gasp in shock. But I understand; my dad was a hypochondriac/worrier, so I can’t even talk to my own mom, even about something as simple as why I turn down an invite to go to the grocery store (I’m extra tired/wobbly/achy) without her getting upset with me. (Hello, I need some compassion over here…)

Are there any GBS/CIDP groups near you or even a liaison you can reach out to? I’ve never been much of a group person, but I got determined to attend whatever meeting I could once I was able to drive again.

Interesting that you say you are weak and wobble. Jim still does too.

The meet up groups are the same here too, hiking and such but I have seen painting and beading, AKA craft groups.

This foundation did have a day in the park last November with patients and suppliers. It was ok, but I would not say it was a chatty group. We did run into one of his PT’S that has CIDP and never knew it. That was a surprise.

I know about people thinking some one is a hypochondriac/worrier many are, but with this disease you never know when it will hit again, I keep asking what symptoms are we to look for if it is a relapse? More pain and numbness from one doctor, the other stated more weakness. So what is it? One neighbor we have has ALS and they have a group that meets, see if you can get into that group to socialize, bet they let you in. Just remember, we are all in this together!

Susan–To answer your questions: I started monthly infusions, but then my blood pressure dropped so low that we had to stop. I am seeing a different doc to decide if I need to continue or not. My doc was affiliated with an infusion center and kind of strange. I liked that he understood CIDP and GBS and was a great doctor, but not that he was making money off of getting on people on infusions.

I am located in Philadelphia, PA. How about you?

When I click on the link that to try and find a liaison, it doesn’t work. Also, I used a liaison reference provided to me by someone on the site and the email didn’t work! I also originally got in contact with someone who was a liaison when the link was working, and that person stopped emailing me. People are people and they have lives, I understand, but it doesn’t make it any less frustrating when you are trying to get help! I hope you can find a better one, too.

I am on MANY happy pills, haha. I have some psychiatric conditions as well. So, that’s fun.

I am sorry to hear about you and your husband’s struggles. It is an isolating disease because no one really knows about it. When you mention MS people get it. But you mention GBS or CIDP and people are like…huh? When I came into my college classroom with a walker one day after not using one all semester everyone said, “What happened?” I just responded, “Nothing happened. I just use this sometimes.”

Electra–Like I mentioned to Susan, the liaison I had original contact fell off of the face of the earth. The other one that someone recommended does not exist, apparently! And the link is now broken. 🙁 I made a post on a local site seeing if anyone wanted to get a GBS/CIDP group together, so we will see if anyone responds. I also filled out a volunteer application for this site in my area. Hopefully that will help me meet some people!

For everyone–Isolation is no fun. We need to keep trying to find ways to keep ourselves busy. I will take Susan’s advice and try to find a craft group. Maybe one exists in my area!

LWolf:

Had the same issues with the contacts. E-mails did not work, phone number did not work, then I found the person about 3 hours from here, Ft. Myers, Fl left a message, never called back till I called again, short conversation but I person called from Alabama which was only once, BUT he gave me more info than anyone.

Volunteer ? I tried they want you to run, teach other doctors about it, do presentations on your time and dime. Filled out one app. received a call then nothing. Guess they make money on the donations. Check with your hospital and the ALS they may have more info. You are in a major area, there has to be something.

The happy pills, and your situation, I would remove that from this blog, its no ones business about your personal situation AND many times doctors put you on meds just to keep you quiet.

Let me know about the meetup. and Keep in touch! HUGS