New To This In Huntsville, AL
AnonymousNovember 16, 2013 at 7:12 am
First of all thank goodness I found you all.
my name is Melissa and my husband was recently diagnosed with CIDP.
He has been on medical leave since 08/29/13 due to pain in his abdomen, legs, feet, chest and back as well as extreme fatigue. We started out with our primary who insisted this was diabetic neuropathy. After several visits and us saying that something is not right we were referred to neurology. Since our first appointment with the neurologist we have gone through tests such as MRI, blood work, CT, Meylgram, LP and Nerve Conduction study. I guess like most people diagnosed it came mostly from the LP having very high protien and the nerve conduction showing abnormal reading in every area of his body that they tested.
We start IVIG treatment for him next Thursday but we are so unsure of what to expect. Essentially this was thrown at us and we have been stumbling our way through it. So while I try to stay positive for hom the reality of the coay of the treatments and the length of time to get better makes it hard.
for the last week I’ve beem fightimg a bug and after going to the doctot I found I have bronchitis. They seemed very concerned abour my husband getting and started ageessive trearment on me. How do you handle it all, the sress?
I’ve been trying to read up on this but every person I hear about has other issues. Has anyone had the pain the abdoment with lightening bolt like sensations randomly affecting pain?
I will stop rambling, its just nice to know there are others out there.
November 16, 2013 at 1:37 pm
A general practitioner is not likely to be able to diagnose a neuropathy correctly, so should be referring such cases to a neurologist without prejudging it. The LP and nerve conduction support the diagnosis of GBS or CIDP, with the two distinguished by the pattern of presentation of symptoms.
IvIg is the usual primary treatment. It starts with a “loading dose,” which is usually administered daily over five days. Then a periodic regimen of maintenance doses is established, the frequency determined by need. There is a lot of variation in the disorder and in response to treatment. Supporting treatments are steroids and other drugs. An alternative primary treatment is plasma exchange. I had this because IvIg was ineffective for me.
“Lightning bolt” pain is common during the active phase, usually in the legs. This should improve as the disorder is controlled.
November 17, 2013 at 10:34 pm
IvIg gave me almost immediate relief on the first day of treatment,
however, that faded until one day after the 5 day IvIg loading dose, then the
IvIg gave me GREAT relief for 3 weeks. After 3 weeks, I crashed back to
my previous state of muscle dysfunction. After 3/5 day sessions per month, my neurologist
prescribed 3 days of infusions, every two weeks. I am very confident
that this new schedule will load me up and a smaller does can then be prescribed
It took me 5 years of constant hectoring of Kaiser Hawaii to have my
condition recognized. At times I was reduced to a jell-o like state of immobility
and immense pain.
I have a permanent foot drop, twitching that I believe
will never cease and other symptoms that I believe could have been cured if
my CIDP was recognized earlier.
I also have mild diabetes and I knew I had something else going on. I complained until
I was blue-in-the-face to Kaiser Maui. I took matter in my own hands by getting a
stronger diabetes medication, becoming extremely fit and lowering my Ha1c to 5.5 for many
months, only then did Kaiser realize I had other things going on.
My concern now is an elevated M protein that could be a paraneoplastic
syndrome manifested asperipheral neuropathy… but that is a
cellular bug-a-boo of a different color.
However, my oncologist tells me the IgG can have
a beneficial effect on the IgM’s
Good luck…hang in there. When the IgG kicks in for me I literally jump for joy!!!
November 19, 2013 at 10:07 pm
I wish you and your husband well. This is not an easy diagnosis. I was diagnosed in February of this year. For me I was just so happy to finally know what was wrong and that it was treatable. I didn’t even think about the long term ramifications. When I was diagnosed, I was using a four wheeled walker and was unable to get up stairs or stand from a seated position without help. I did get zingers, but I got them mainly in my feet and legs. IvIg got me back on my feet after the first day. By the end of two weeks, I was walking without the walker. Stairs and chairs were still a problem, but by April I was almost back to normal. I’ve had two small relapses, they were both taken care of by temporarily increasing the IvIg dosage. I get very few side effects from the IvIg. Some minor dizziness, slight heaviness in the chest, but no headaches, etc. that some others have reported. This diagnosis has all of us stumbling around at the beginning. I’m still not sure myself where I’ll be tomorrow. I do know that for me IvIg has done wonderful things. My dosing schedule has been very fluid from the start. My neurologist adjusts it according to how I’m feeling and what my latest EMG says about my nerves. Right now I have infusions two days every ten days. The nasty zingers are now only in my feet, they seem to get more active after an IvIg. I believe that the pain is the nerve pathways reestablishing themselves. Who knows, but it helps me deal with the pain. Good Luck…there is hope.
AnonymousDecember 17, 2013 at 1:35 pm
Little fireworks going off, mostly in my feet, but occasionally in my legs and hands, increased after I began treatment, but have begun to subside as I reach 6 months of infusions of IVIG and Solu-Medrol (methylprednisolone), every two weeks.
I too went through months of testing, after a couple months of trying massage and chiropractic to alleviate the pain, before I suggested to my neuro that it might be CIDP. My reflexes took a while to completely fade, which is why he hesitated on his diagnosis, but as soon as it was made we began IVIG infusions.
I’ve been out on short term disability from work for 3 months, now. I have recently added long term insurance to my benefits from work, just to be safe. But, my follow up with my neuro is a month away and I’m hoping he will release me back to work, even if restricted. I know I have used up my FMLA leave and I’m not sure when it renews. I hate being out of work, especially at 60% salary and the boredom is maddening.
I also paid a lot of money and met my max deductible quickly as 5 MRIs, CT Scans, Xrays, EMGs, Myelograms, and spinal taps, plus prescriptions for pain meds and bills for IVIG (Wow…that’s expensive!) quickly added up. For the last few months I’ve had no deductibles for treatments as it’s 100% covered…until January, when we get to start all over again.
This is frustrating for the patient, the caregiver, and friends and families. We patients can begin angry and afraid, feeling trapped and demanding to know, “Why me?!”, but caregivers help us by just being there and helping us in and out of the chair, helping us trim our nails or open the water bottle, when we can’t. And commiserating with us. Sometimes we just need a shoulder to cry on and if you cry too, it’s okay. We need to know we’re in this together.
At some point we begin to realize this is truly life changing. I’m not the old SSS anymore. I have a new life with new challenges. But, I can see light at the end of the tunnel. I regained hand and arm strength and started Physical Therapy and got AFO braces to support my weakened ankles. Now, I can walk further than ever and no longer need the motorized shopping cart at the grocery store. I keep my cane handy, though, and still have my wheelchair for long trips in the mall etc. But, I can manage to go do things on my own now and that’s an amazing thing.
We are not alone. We’re all here experiencing this thing and we can share our experiences and ask each other questions. The key is to keep a positive outlook during the critical new phase. Holding on to anger and frustration causes stress and that never helps the healing process. Good luck to you and your husband.
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