CIDP dx…

Anonymous
September 23, 2011 at 1:08 pm

You say that getting IVIG every 4 weeks enables you to walk with a walker outside the home, a cane in the home. Any foot drop or loss of the use of your hands? How bad were you at your worst, before getting IVIG. I was just trying to figure out exactly what you are getting from the IVIG, & that might make me understand better why your doctor is ordering it more frequently.

CIDP dx…

Anonymous
November 10, 2006 at 10:01 am

I am thinking, from the slower onset of symptoms, & the fact that you have never been totally paralyzed, that it might very well be CIDP. If IVIG got you out of the wheelchair in the past, then why isn’t your neuro prescribing it for you now? It is all about quality of life; maybe it is time to find a new neuro, one who will dx your illness correctly. It doesn’t sound like MS to me…

CIDP dx

Anonymous
November 7, 2006 at 11:38 am

Pam,

Currently, most of my symptoms are in my right leg. My left calf has been slightly stiff and cramping occaissonly for about the last three months. Other than twitching all over, that is about it. I am in the fifth week of once a week IVIG’s. Last week I started to notice that the stiffness in my calf was not as noticeable. Hopefully that is a sign that the IVIG is, at the least, slowing this down. Back in August, about 3 weeks after my initial 5 day blast of IVIG I did have about a week’s worth of substantial improvement in my right leg. So I do have hope.
I did spend 6 days at Mayo in Rochester back in late September. I am scheduled to go back mid-Dec. Thanks to you and everyone else on this site, I will be armed with a wealth of info so I will ask the right questions.
You stated that U of Mn saved your life. If you don’t mind me asking, what are they doing for you and how are you responding?

Brad

CIDP Dx…

Anonymous
November 7, 2006 at 11:02 am

You talk a lot about your one leg, is there other involvement? The reason I ask is because CIDP tends to be very symmetrical (not always), but usually what is happening on one side of the body happens on the other side as well. How are your hands? CIDP is an illness that tends to affect the peripheral nerves first, that would be the feet & hands, & then acsending from there up the legs & up the arms. It also tends to have a lot of sensory involvement, or numbness as the motor functions are affected. Also, the EMG would usually show some involvement with the nerves being blocked somewhat.

Did you go to the Mayo in Rochester, MN? That is where I had all of my testing done (3 months inpatient), but I was in terrible shape, not totally paralyzed, but could not walk, use my hands & couldn’t lift up my arms & legs. They were good about getting a dx for me, but then basically sent me home saying there was nothing they could do for me. IVIG, PP, & steroids didn’t help me much. It was at a teaching hospital that I got the protocol that actually saved my life. So don’t give up & not have a correct dx, there are some excellent neuros out there, just need a referral to get in to see one.
Pam

CIDP Dx…

Anonymous
October 9, 2006 at 7:51 pm

Welcome to the forum, I am glad you found your way here. First off, I would say that your dx is correct & that you do have CIDP & not GBS. The reason I can say this with almost certainty is your positive response to steroid therapy. CIDP tends to respond well to steroids, whereas GBS does not. Secondly, your doctor should not have given you any time frame as regards to recovery. Depending on the severity of your CIDP, you could possibly be facing a lifetime with this illness, although getting regular IVIG infusions could very well take away most of the symptoms you currently have. Did your doctor not tell you that the “C” in CIDP stands for chronic?

As for dealing with the residuals, I used to think that CIDP was the absolute worst illness one could come down with. Now I realize that there are much worse things, even though I spent 3 years in a power chair with no use of my hands. I had a very severe case & am now content to walk with AFOs & take a cane when I leave my house. At least my hearing, vision, & even my breathing seem OK now. Even if you are not able to get rid of every residuals, CIDP can be a very managable illness to live with.
Pam

CIDP Dx…

Anonymous
October 6, 2006 at 11:49 pm

I hope you come here often & ask a lot of questions. Many of us have been on the Forum for a long time (for me it has been 4 years), & with that we have read thousands of posts on various issues. Also, we have experienced much of what your father is going through. I came down with a very severe case of CIDP back in March of 2002. It was so quick & I was so immobile that my originial dx was GBS. I would be glad to help in any way possible…

Also, there is always the option of private messinging or private emailing any member just by clicking on their name, which takes you to their profile. There is a link on that page giving you the option to send a private message or email. If possible it would help out a lot if you could give us his current condition, as well as what treatments he has tried. Also, it is very important to keep the pain level down, as that is what got me down the most. If he has neuropathic pain caused by damaged nerves, he should be taking neurontin, or the generic form gabepentin.

Please come back & tell us more about your father. Just click on Post Reply & type away. Some of us “old-timers” stay on mainly to help people new to the illness. I doubt that there is really much more I could learn about it, I am sure I probably know more than most doctors by now.

CIDP Dx…

Anonymous
September 14, 2006 at 10:32 pm

I was Dx with CIDP after a spinal tap (very elevated protein levels), nerve conduction tests & EMGs, & a sural nerve biopsy. But Mayo did not stop there. The gave me 4 complete sets of MRIs to rule out MS & other things, a bone marrow biopsy & spinal nerve root biopsy to rule out leukemia & lymphoma, a lip biopsy to rule out Sjogren’s disease, CT-scans, X-rays, etc. I think a lot of diagnosing CIDP comes from ruling everything else out.
Pam