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Michille story of CIDP-MS-IVIG

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Patient Story -20 CIDP-MS

Hi my name is Michille.  I was diagnosed with CIDP in 1991. It took a while to be diagnosed . DR. Richard Barohn diagnosed me, I am currently seeing Dr. Ann Bass a student of Dr. R.B.

I had been sick for about 4 year's total.  I was diagnosed @ Baylor College of medicine with possible MS or possible Conversion Disorder. My father had MS

 MRI, Spinal Tap (w/proteins in the thousands) and seeing a psychiatrist that was my diagnoses for about the first year. The psychiatrist said I did not show enough emotion about my fathers MS.  I had lived with it all my life and my daddy has always had a great outlook, he smiles, and still to this day, won't give up and works as an electrician.  My parents are amazing.

 Dr. John Seals, a child neurologist examined me. I showed no movement on his  machine with the Nerve Conduction Test.

 He then sent me to Dr. Barohn at UT Health Science center. After another spinal tap, MRI , Nerve conduction Nerve Biopsy test Dr. Barohn said it was not all in my head, and it was not MS. Back then it was called Slow Guillian Barre or CIDP. I was put on 150 mg prednisone daily, and later Imuran was added. At the end we did the IVIG that was the miracle I did the hospital stay, then outpatient twice.  Before the IVIG, my eyes would not close all the way; I had to use one hand to hold them closed as not to get soap in them when I washed my face. Food would come out of my mouth when I ate, so I would cover it with my shaking hand.  I walked with a cane, had a chair in the tub, and even going down a curb was a huge challenge.  When I would fall, I would have to crawl to get to a place I could pull myself up, but only after I rested, could I crawl for help.  Once it took me an hour to get to work because I fell twice and was so exhausted I had to rest between falls.  This happened more than once but this was the worst. Fall, rest, crawl, rest, pull up, rest and walk a ways, then start all over again. Anyway the IVIG did wonders. The prednisone made the progression slower, but I continually got worse.  This was a four year process, when the IVIG was tried it was the only thing that stopped me from the slow progression and started to make it where I was beginning to recover instead, which I feel is happening now.

I have been great for 12 years now I went through two pregnancies (daughters are 7 years & 4 years) with out much of a problem. Residual pain and weakness, but I could do anything, run, wait tables, (for a get out of the house kind of thing and talk to adults, 2 times a week after my children's births, I  was at the same restaurant but instead of working in the office I was out in the restaurant talking and having fun with people).  Now I am in sales in a department type store, even though things have been rough, I want to continue to work.   I was doing great!  I had even, the previous week to all this happening.  I had helped at the church Lenton Lundheon, as I have been doing for the last few years.

Now 4 weeks ago at 4:00 am I woke up with my foot hurting so bad I could not go back to sleep.  I got the kids ready for school and put one on the bus and the other one to school by 10:30, school started at 9:00 but I was limping and hurting.  I went to the clinic in my neighborhood.  When I got to see him we talked about the pain, which had gotten better by then.  He said if it was gout it would hurt when he touched me.  He asked about Lupus, at that same time he was checking my reflexes, as I sat in amazement praying, Oh God no, he could not find any reflexes in my right leg, it took many tries before the left one responded, the right one never did.  I told him about the CIDP, he took x-rays to rule out the break, I prayed it was broken, it wasn't, and CIDP was probably back.  He said he knew a great Neurologist but she had a 4 month wait for new patients but he would call to see if she found my case interesting and possibly take me in sooner.  I was scheduled for an appointment the next day at 11:30 am.  I am so blessed!

She confirmed the relapse, we scheduled an MRI for Wed to rule out MS again, and Friday we scheduled the Nerve Conductor test.  Results came in on Thursday, no lesions on my brain so MS was ruled out.  Nerve conductor showed not much damaged, he thought it may be residual or that we caught it at the beginning.  Oh, on Tuesday I started with 60 mg of prednisone, and she explained how I would need to taper off 20 mg a week till I am down to 20 mg and then stop.  Sunday I slept a lot when I woke up in the evening I wanted Chinese food and told my husband I would go to pick it up.  When I was driving I felt weird, every thing felt off, whites seemed brighter, everything seemed brighter, it was weird, and when I walked I looked drunk because I was so off balance.  I called my husband on the way home told him I was on my way home what was going on, just in case.  Monday morning I woke up and my arms and legs hurt so much, they were numb, and felt like they were not there.  I could walk but my legs shook and trembled, it was very difficult to walk, and oh, my, gosh, I was so exhausted to take even a few steps. I called the doctor she increased the prednisone to 100mg a day and then taper to 20 mg and then stop. At this time I am at 60mg.  The legs don't visibly tremble, but of course the inside feels weird, and when I am not walking, I lay in bed and I don't know if my legs or arms or bent, straight, or what.  I am using a cane, I'm not as bad as last time but, my head shakes at times and my face trembles at times, I am stuttering at times and my words are now jumbling and it is hard to think and talk at the same time,  again, at times, not always.  I am trying to be strong for me and my family, I am trying to continue to work, but I am so, so scared. My husband has had to take over everything and at times he has had to stay home from work.  I always said I would never go back on prednisone, I would do the IVIG, but I have not had that option yet, the INS. states that the less invasive things must be first, IVIG secondary.  So I wait and things get worse (my head now) and my legs and arms are better than that Monday but no grand improvements. What can I do? Please help, if you have any suggestion, it would be great to hear from someone that knows what I am going through, I have good days where I try to see all the good, all those years I have had not been sick, I know how very fortunate I am. . But I am scared, sad, oh so many feelings.  I could not stop crying yesterday, I feel better today.


cidpusa comments " This case shows how many cases may be misdagnosed or delayed as symptoms match Multiple sclerosis. But the key here was no reflexs in her legs and that means Demylination thus CIDP"!  Story of Michille and others have changed the practice of neurology and today IVIG is the first line of treatment for CIDP. We are thankful to Michille for providing this history of events which has helped many people get a diagnosis of CIDP.