My CIDP Story/Asking for Advice

    • February 21, 2017 at 1:04 am

      Hello everyone, my name’s Amanda and I’m 27 years old. I’ve been having a rough time lately because of my CIDP, and felt like sharing my story to meet more people like me, as well as get some advice.

      My journey with CIDP began back in January 2013, when I was 22 years old. I had a bad case of the flu and bronchitis and was prescribed an antibiotic to treat it. A week later, I was feeling like my old self again, and had just landed a job I’d been trying to get for 5 years. Things were great, or so I thought. As I began the 5 week training course for the job, I noticed that I was having trouble standing. I attributed it to being tired, and not used to working after being unemployed for 2 years. Unfortunately, things just kept getting worse. First, my hands would constantly shake. Then, I lost the ability to run or even walk fast. The last straw was when I was having trouble stepping up onto the sidewalk from the road. I also noticed a pins and needles type of pain occasionally, as well as tingling in my feet. I went to see a doctor about it, and after multiple tests, they couldn’t find anything. This went on for another 2-3 weeks. I finished my training on a Saturday, and was to start my normal schedule on Monday. I went to go see my Grandma on Sunday, and literally fell through her doorway trying to get into the house. My mom insisted on taking me to the E.R., so I went. A barrage of tests was done, from blood work to CT Scans. Nothing was found once again. The doctor ordered me to stay home and rest Monday, and come back immediately should I get worse.

      Monday night rolled around, and I was getting ready for work the next day. All of a sudden, my legs gave out on me and I was on the ground. I tried to get back up, but found myself unable to. Thankfully my roommates were home, so I called out for them. One helped me get ready, while the other called for an ambulance. I got rushed to the hospital since the EMT’s swore I was either having a stroke or heart attack since my blood pressure was through the roof (Who’s wouldn’t be?!) When I got there, the doctor from the previous night saw me and asked why I was back. I told her I had gotten worse. About 10 minutes later, a neurologist was in my room and asked if I would allow a spinal tap. I agreed. About an hour later, I was in a hospital room with and a diagnosis of GBS, and my first treatment of IVIG going. While in the hospital, I start researching everything I can about GBS and discovered that while the flu could have caused it, the antibiotic could have also caused it due to the rare side effect of causing auto immune diseases. I was in the hospital for five days, and on crutches for four months after that. I lost the job I fought so hard for because of the missed days, and because of their attendance policy (and the fact that I live in an at will employment state), there was nothing I could do to stop it. I thought it was all over, and that things could only go up from here. Boy was I wrong. In August 2013, I was in the hospital again. At that time, I was diagnosed with CIDP. After getting out of the hospital, I decided to go back to school in hopes of a degree. I’m in school for 2 1/2 years before I end up dropping out so I can concentrate on trying to find a job because the bills are piling up.

      Fast forward to October 2016, my neurologist and I have worked well together in keeping my CIDP managed. I finally have a job again, and began training the last week of October. Things go fine, I make it through the training, and life is awesome once again. Unfortunately, at the end of December, the flu hits my town hard. At least half the call center has it, as well as my Grandma and fiance. However, I never get sick with it, which I find odd. Lo and behold, a few weeks later, I’m in the hospital again due to my CIDP. I’m treated, and kept on medical leave from work for a month. On the 14th and 15th, I worked half my shift before I contacted my doctor to ask for an extension on my medical leave. Just working four hours those days drained me of everything I had.

      So, here I am. I’m on medical leave again, with no improvement that I notice. My doctor is worried that this state that I’m in is my new normal, and I worry that I won’t be able to return to work. My Grandma is 86 years old, and while she is in decent health, I worry every day about the possibility of her not waking up. She is the last family I have. My mother passed away in 2014, my father has been out of my life since I was born, and my aunts and uncles could care less about me. This job was my way of being able to save money in the event of her passing so I could have a roof over my head. Now, I don’t know what I’m going to do should she pass away. My fiance can help some, but they are on SSI and disabled themselves. I applied for SSI in 2014, and was denied because I could still technically do call center work since my case wasn’t “severe” (which, in all reality, it wasn’t at the time). My doctor isn’t sure if I should wait a bit longer to see if I improve more so I can return to work, or if I should just apply for SSI. I’ve just lost medicaid because of the amount of money I was making at my job, plus the fact that they offered health insurance. I’m so lost and unsure of what to do right now, it’s not even funny. Any advice would be appreciated so much. Thank you for your time.

    • February 21, 2017 at 8:23 am

      First let me say I’m so sorry you are going through this experience. My husband has also been diagnosed with CIDP and the only advice I can give you is go ahead and file for the SSI. My husband was denied disability because we kept waiting on an improvement and apparently there is some kind of time limit of unemployment that allows them to say you voluntarily quit working. Don’t wait to apply, you can always discontinue the assistance if you do get better. Fortunately for us, he was nearing retirement age and I have a wonderful job with great benefits.

      You are in my prayers.

    • February 21, 2017 at 4:49 pm

      Have you tried other treatments for CIDP beside CIDP? Maybe a different immune suppression drug or another treatment besides IVIG?

      I hope things turn around for you. I remember not being able to lift my legs to negotiate a curb from December and thought what is happening to me. That you’ve recovered and relapsed must be difficult.

      I’d definitely have a heart to heart with your neurologist and look into different treatments that might break the cycle you find yourself in.

    • February 22, 2017 at 12:08 pm

      Hi Amanda,

      I’m 29 and was diagnosed with CIDP last year. Since you were working before, I suggest you apply for EDD and SS. The worst thing that could happen is they deny you, in which case, you can appeal. Sometimes people have to appeal a couple of times before getting approved, so be persistent. If social security denies you or they give you under a certain amount, you can also go to your local office to apply for supplemental income. There are so many government assistant programs out there that those with disabilities can apply for, but the information isn’t put forth for obvious reasons. I know people who work in SS, so I have insider scoop that most wouldn’t be aware of. Hope you find this information useful and sending positivity your way!