badmommy
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June 4, 2007 at 9:48 pm
Welcome to the family!
June 3, 2007 at 11:35 amI have been doing IVIG since Nov of ’02. I pre-med with Benedryl and Extra Strength Tylenol at home and then a small dose of Solu-medroyl at the outpatient center.
After each infusion, my body goes into ‘flu mode’ for about 3 days where I just feel ick! Then there are also migraines which I find relief from with Exedrin. They used to make these Exedrin quick tabs which dissolved on one’s tongue which worked FAST!
I hope you find relief with the IVIG. I got back about 75% of what I was at before CIDP with IVIG alone.
Good Luck!!
Peace,
MaryMay 30, 2007 at 9:53 pmLOL, Regina! I too was hoping for a breakthru. My AFOs have given me quite a bit of my life back but they are also causing sores, bruises, etc and overall (with the midwest summer coming) HOT!
I know there is a hospital in St. Louis, Barnes-Jewish, that does nerve transplants. Again, it is not available at this time for those with demylenating neuropathy, but I keep my fingers crossed for the future of medicine!
May 30, 2007 at 1:45 pmI’m going to NorthWestern in Chicago on Friday to see a specialist and this is one of the many things we are to discuss. I always joked that IVIG should come in a pill form – looks like we are getting closer, LOL!
May 30, 2007 at 1:40 pmI would love to find something to replace my AFOs.
I checked out a few of the websites and I found this statement…
[QUOTE]This type of stimulation will not work with people who have damage to the lower motor neurons/peripheral nerves.[/QUOTE]
It seems to be ok’ed for those with MS, brain/spinal injury, and cerebal palsy though but not us affected with demylenating of the peripheral nervous system. Maybe in a few years:)
May 8, 2007 at 11:03 pmMy feet are pretty small due to the muscle atrophy so NIKE is great for the narrower foot. They accomodate my AFOs and was about the only shoe I could wear. I recently ordered some shoes from FOOTSMART because many of them are orthotic friendly.
I finally have a pair of sandals. They are the Projet shore walkers and finally allow my toes to breathe:D I can’t wear much of anything else and am looking forward to the day when a designer makes cute shoes for us who are wanting something fun but practical:D 😀April 30, 2007 at 11:25 pmGreat news, Emily!!
😀April 28, 2007 at 9:14 amAfter getting treatment for years, one bill came back rejected. I went thru 3 people who all told me it was not covered. The stress had me shaking and completely wound out of control…this stuff ain’t cheap!
So after I filed my appeal, I called one more time to let them know I was appealing and to request a copy of my file where it stated that I was approved for this.
Well, thank heavens that the insurance company hired one intelligent person out of 40! The bill was coded wrong and once she fixed the error, it was paid immediately.
So what I did was get that lady’s extention so now whenever I have a mistake, I call someone who actually knows what she is doing.April 27, 2007 at 5:04 pmI made them document in my file that my IVIG would be covered each month. It took some argueing but my coverage states that they must cover ‘whatever is medically necessary’. I wouldn’t be surprised if they just rejected it without realizing it. My friend works for Cigna and they are discouraged from finding incorrect benefits paid – she was actually told that if the patient doesn’t find the mistake, just leave it:(
I’ve also had times when 1 code number is wrong and the whole claim is denied because of that:rolleyes:April 26, 2007 at 10:20 pmMy ivig treatment back in ’02 when I started was around $5600. My most recent bill showed it coming in at over $10,000. Thank goodness our insurance has to cover it.
I did just run into a first…this was the first time I have ever had to wait for my treatment due to a shortage. It arrived about a week later but I must admit I was beginning to worry.
April 26, 2007 at 10:13 pmHello, Emily!
I know with my MRI’s, they were coming back clear but I am still instructed to have one every year. The reason being (I was told) is because there are incredibly small lesions that a person can have on their spine that may not show up for years and then do all of a sudden.
I hope yours is nothing as I know you’ve already been dealt a lot with the CIDP. Please let us know what you find out!April 26, 2007 at 10:08 pmDuring my pregnancy, I was told repeatedly that it was good ole carpel tunnel. It was only afterwards that the neuro ran a nerve conduction velocity test (NCV) and found speeds that reported demylenization not carpel tunnel. If you don’t mind being electricuted:D , this test can give a pretty clear result.
April 26, 2007 at 10:04 pmI would encourage you as well as to contacting Make a Wish. Our Star Wars costuming group has been asked several times and it is pure joy to see the child’s face.
The founder of our group had a daughter who was dx’ed with an inoperable brain tumor. Her wish was Disney and what a dream it was for her!! She and her family (along with step sisters and brothers) stayed right in the middle of Disney. I guess they have a few private places that open up right to the park so the child can return home if the day gets to be too much. The kids also had an ice cream buffet in their room and were given the royal treatment complete with a Hillary Duff concert/meeting.
With all the tests, treatments, and doctors, Emily and the other sweethearts in here deserve to be kids. Let us know what happens!April 13, 2007 at 4:34 pmI don’t know if I needed a specialist as much as I needed a doctor who understood my symptoms were CIDP and not pregnancy. When I tried to stress how my hands were tingly/numb, I was told it was carpal tunnel and to get braces. Even after I reminded them of my medical history, the medical records I requested read “suggested braces for night time use”:rolleyes:
I should have been more vocal but I was too tired at the time. If I ever do get pregnant, my ob/gyn will be one who has fewer patients. As long as she has a competent neuro, she should be fine. Just make sure the 2 doctors talk – mine didn’t (I found out after the pregnancy) and I think it would have helped.
My mom always says being a grandma is more fun than being the parent – enjoy!
April 11, 2007 at 11:52 pmHello Dawn! I just responded to the email. I haven’t been on for a while due to problems with my hands. I had the IVIG during my pregnancy and it was not a problem. In fact, my doctor believes that the increase in my volume of blood may be one of the reasons that I didn’t get the migraines that I always get following a treatment.
Plus, at one point, I was able to go 8 weeks without IVIG although the average was probably closer to 5-6 (my norm is 4 weeks and I am back to that now). The doc did stop the solumedroyl that they give me prior to treatment as a precaution.IVIG is also in the book as okay to take while nursing. I quite nursing after 2 months due to my son not gaining enough weight and the drain it was taking on me.
I did relapse after the pregnancy. I now have foot drop in my right foot (at least I have a matching pair now:D ) and muscle atrophy in my hands. On the plus side, I have handy new AFOs which make walking feasible and I have been in OT/PT to gain back some muscle. I listed world champion arm wrestler in my ‘goals’ in therapy – who knows?!
I would do it all again and we’ve even talked about another baby.
I sent you my number – feel free to call if you need anything. And congrats on the baby 🙂
