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Living with Polyneuropathy CIDP, GBS, & CMT

Diagnosed in 2014

Hello,

I am new to the blog environment, but was diagnosed with CIDP winter 2014 after going through every test and two opinions. I am 27 years old, full time medical coder and part-time student working towards my Bachelors. I first noticed symptoms of numbness, tingling, weakness, and fiery pain in both of my arms and hands. I received IVIG after steroids didn't help and it worked within days. I had a relapse five months later and in a matter of days I could barely walk and had to had help with everything including bathing. I instantly got better from the IVIG and I have been on that since. I am regularly receiving treatments every 8 weeks. The hardest thing for me is feeling and looking fine until I get symptoms again, it's a constant struggle with being tired, weak, balance issues and realizing that the disease hasn't gone away. Multiple doctors have said that theres a possibility it could go dormant for years or may never come back but then every time I notice symptoms again, it crushes me. I have had a hard time also because I am so young and most people my age don't have to worry about these things, they don't even have to worry about insurance really which brings me to another difficulty that I have experienced. I am in Virginia and it has been very hard to find insurance options that cover Gamuniex but also have a deductible or coinsurance that I can afford. How is everyone else paying for this expensive treatment? My life is basically on survival mode always and always thinking about how to pay for my insurance and have my treatments covered, I can't live on my own and I can't save either, my life revolves around the medical expenses. Does anyone have any input, anyone that's young and diagnosed with this or have similar symptoms or is there anyone lucky enough to have gone into remission so to speak?

Hi Scorpo, there are a couple of other younger members I've welcomed to the site recently. If you're interested, I can do some digging and help you connect.

As for the the insurance aspect is something most of our members struggle with. Using the search bar on the discussion page for the word "insurance" may help answer some of your questions, but hopefully we can get some answers on this thread directly!

I think the remission question is also a good one for a general topic on the discussion board. From members' stories I've read, it sounds like some of them will go into remission for periods of a couple months, but I'm not sure if I've heard of total remission. I think a discussion on the topic would be very useful for everyone here.

Hope this helps, you are so young to be going through this and I hope we can help support you through it :)

Yes I would very much like it if you could reach out to other young patients. I will try to put more on the general discussion, once I figure out how this whole blog thing works. :slight_smile:

Sounds good! We just switched platforms yesterday, and I am still getting used to this new format. I know we had a few younger members join recently, so I will see if I can find them here and help you guys connect. Starting a general discussion will help too!

Hi Scorpo! I was 48 when GBS hit me almost 2 years ago so I was a bit older than you but I was a marathon runner who ran lots of fun themed races with my 22 year old daughter. I can relate with getting the symptoms again because I have experienced two of these “reflares” of symptoms at two different times in my recovery. I am currently in a struggle with symptoms again following a race that I did with her in March so I had been feeling great. It’s been the whole weakness, fatigue, balance trouble thing again. It’s so frustrating! I went back to physical therapy which has fixed my balance but I am having a hard time with the setback. It is tough after feeling so good. I try to be appreciative for having come this far but I don’t like falling back either. Wish there was more info out there to help me understand what happens and how to manage it. I’m in NC and have had trouble finding good medical support to help me with recovery setbacks. I commend you for pushing through!

Thanks for the entry. I didn’t do marathons but I liked doing themed races but it was too much on my body so I’ve had to change my work outs. On a daily basis, you don’t realize how hard it is for your body to work until you’ve done too much and you’re totally fatigued. It is hard to find information or to really comprehend it. I had never heard of anything like this until I was diagnosed and the only reason I knew about GBS was because I work in healthcare. Have you had a lot of response on the blogs here?

I had worked up to a 5 mile race in March and then tanked with fatigue. It’s been tough to come back from it. I’m still trying to. My nerves/ and or muscles just don’t recover well when I cross that line. And the line moves so I think I’ve recovered just to get hit again. I have had a lot of response on this site. It’s been a main source of feedback for me through all of this and I’m so thankful. I work in healthcare too so I had heard of GBS but knew very little details. My medical support has been very limited in knowledge of this so that’s made recovery tougher than I think it has to be. Though I realize I’m lucky to be where I am, there is more to this than just making it through the initial hit. Recovery for me has been like a game with crazy rules that don’t match anything that I knew before and I’m having to learn as I go. I’m currently on a mission to learn more again. I’m reading a recommended book with some pretty good info written by a doctor who had GBS and I’m trying to find an experienced doctor to follow up with. Does your fatigue ever last for months after you overdo it?

:pensive:I was diagnosed at the age of 25:neutral_face:about 2 years ago!