Recently diagnosed with CIDP
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October 28, 2014 at 10:12 pm
Hi all. I’m new to this forum and also new to the knowledge of this disease. I’m 22 years old and at the end of August of this year, I started experiencing mild right arm weakness that progressed into feeling loss and weakness in all four limbs (although the severity of the weakness in my right arm was by far the greatest). By the end of September, I was too weak to stay at home safely so my mum took me to the ER. Within four days, my neurologist arrived at the diagnosis of CIDP and started me on the IVIg treatment the next day. I seemed to recover a fair bit of strength, so I was transferred to a rehabilitation center. I’m currently at said rehab center, but I’m noticing that the feeling loss has returned and it’s rather difficult for me to get up off my bed, chairs, etc. so I suspect I’m relapsing. Admittedly, I’m rather scared and unsure as to what my future holds – it was terrifying to go from a perfectly healthy 22-year-old to a worm that needed help up off the toilet in the span of just under a month! Any advice or information would be stellar, because at this point I know almost nothing, as do the medical professionals involved in my case. Thanks~
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October 29, 2014 at 1:51 pm
Been there, done that, no fun! Are you still doing IVIG?
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October 31, 2014 at 1:35 pm
Your disease progression seems very rapid. Yet, some IVIG seemed to help. Consider attempting to get more IVIG more often.
You stated “… because at this point I know almost nothing, as do the medical professionals involved in my case. Thanks~.”
My advice is to find Medical Professionals who know more than almost nothing. On the main GBS-CIDP page click on CIDP, then use the drop down menu to select and read all the available information there. At a minimum you could look for a neuromuscular CIDP Specialist.
Do not be complacent, take charge, do not sit idly by. It is likely your condition is not sitting idly by.
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October 31, 2014 at 10:20 pm
My husband is on the other side of CIDP. He is older (59 now) but an active guy. Skiing every weekend, paddling during the summer. He was in a rehab facility for 4 months.
The key for him was getting to a neurologist who know what to do. He received high dose IVIG. Started every week, then as he got better, every other week, then every three weeks. He has now been off IVIG for 9 months after receiving it for 3 years. Small price to pay for being able to walk. He is back skiing and doing great. He even walked a half marathon.
We have talked with many people who have recovered from this and you cannot tell they ever had it. Marshall still has some foot issues, but nothing that stops him from doing anything except maybe running.
If you want to talk with him, please reply and we will figure out hot to get in touch. But, #1 thing to do, find a neurologist who knows GBS and CIDP. We had to travel to Seattle to get to someone who know what to do.
Take care.
Patty
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November 8, 2014 at 12:37 pm
Your case seems similar to mine at the outset, although I am much older. I went from a normal, healthy adult to a wheelchair in about a month, and kept going down. After IvIg treatments I was moved from the acute hospital to a rehab hospital, prematurely as it turned out. I continued to decline, even after a second loading dose of IvIg. I was then back in the acute hospital and was switched to plasma exchange (PE). In a few weeks I got back to rehab and it has been uphill since then.
My advice is:
Get a neurologist who is experienced in treating acquired peripheral neuropathy.
Try alternative treatments if necessary to find the best one for you.
Be patient. There is no quick solution to this disorder. I spent 18 weeks in the hospital, the last eight in rehab units, then did six months of outpatient therapy. It was many more months before I reached nearly full recovery.No other patient’s experience will predict the outcome of your case, however. There is a lot of variation. You must try to remain optimistic and work toward the best recovery you are able to achieve.
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