First of all, thank you all for the well wishes. I was just diagnosed with CIDP about a month ago, so I am still coming to terms with it, but it helps to know that there are support groups out there to help.
My journey to diagnosis took 5 years, and during that time I had no clue what was going on or who to turn to. I resorted to writing, and once I received the diagnosis I decided to share my story. For any interested you can find it here:
Welcome skosbu, we are a varied and mixed group here mate from all over the world.
theres a fair bit of knowledge here as well, so if you have questions, ask away, but have a good look around first, as you may well discover that your question has already been answered :)
Wow 5 years to figure out what you had is awful.I saw my doctor and within 10 minutes he had a real good idea what I had and he was right on the mark.Of course I had to take test to make sure but he knew.I believe that quick knowledge helped me in my fast recovery.
Hello, yes I can quite understand your situation. It took about the same amount of time for my CIDP to be diagnosed. I also think that looking back, there were a lot of odd symptoms that cropped up. They all pointed to the disease, but at the time I knew nothing about CIDP. Keep positive, it is hard at times, but at least by joining this support group, you realise you are not alone. Best wishes.
CIDP...never heard of it, until June of this year. I am sorry to hear that it took you 5 years to be diagnosed with it. It took 15 years for me to get to a Neurologist who knew immediately that it was CIDP. I like the idea of writing a blog. I will read yours and then put together one of my own.
I am very happy to have found this support site and looking forward to reading the comments posted here. I will not be posting much but reading lots. My typing is terrible and takes me lots of time to complete because of my age, 78.
I enjoyed your blog and laughed out loud several times regarding moments I had myself (‘am I crazy?’). Thank you for that, it was really nice to relate to someone. It’s been a long journey for me as well. Several years, ER visits, specialist visits, and my husband believing he married a full on hypochondriac. Apparently, he didn’t. I was diagnosed at Mayo Clinic in Rochester, MN on my birthday this last September. I had been going to Mayo for a year. It was my third visit and so I went alone. I had been diagnosed with small fiber neuropathy, voltage gated potassium channel antibody syndrome, cervical dystonia, and chronic migraines. We tried an experimental round of IVIG and Rituxin this past summer (14 week protocol) and it changed my world for the better until they stopped treatment in August. Then, life went back to Hell in a handbasket, so to speak. I didn’t realize I would be blessed with a diagnosis, but I was. I was both thrilled and terrified. Thrilled that I had something that had a real name and some recognizable treatment and terrified that there is no definitive outcome. I have two children, a daughter and son, ages seven and four, respectively. At times, I can’t even fix my daughter’s hair or feel her hand in mine. Life has changed. At least my perspective of it has in so many ways. I’m rather tenacious and proactive so I have hurt myself several times attempting to get better. I’ve learned to slow down. Physical therapy twice a week has been incredibly helpful and validating. I recommend it to everyone. I have a team that I work with at the med center. If you are like me, being active is the last thing on your mind because you’re thoughts are crowded with pain, crazy sensations all over your body, trying to make your limbs cooperate, and trying to be normal. But, PT and lots of other drugs have gotten me back on my feet. Also, I can walk a little more like a lady now that I can comprehend where my feet are in relation to my body. Lol! Welcome! I’m a newbie too.
Welcome skosbu,
As people have already said, we are a mixed, tight knit family here. Whatever questions you have, don’t be afraid to ask. I need to get on here more often and keep up with everyone. I was diagnosed with CIDP 4.5 years ago. I was on IVig four years, and was recently switched to SubC ig due to my veins giving out. Keep fighting the good fight! Don’t give up! Reach out to our family here! Talk with ya later! Jack