AnonymousFebruary 9, 2009 at 8:19 pm
Hi all. I’m new to this forum but wanted to share my story and see if anyone has had a similar experience.
I was diagnosed with CIDP when I was 18 (now 26) after very slow progression of foot drop and lower leg muscle atrophy that took me a while to notice. I have muscle atrophy and foot drop in both legs although the left is worse than the right and I have minor muscle atrophy in the right hand. My EMGs have all suggested demylenation and show mostly motor nerve involvement, but some abnormal sensory nerve results. Brain and spinal MRIs, blood tests, spinal tap, CMT gene test and a battery of blood tests have all come back normal. Reflexes are actually more pronounced.
My symptoms appear to be fairly steady over the past 8 years and any improvement or worsening is difficult to identify. For four years I received IVIG 2g/kg over two days every 3-4 months and experienced a slight improvement followed by a slow decline. For two years after moving I did not receive treatments due to work and my new dr performing more tests and think I had some minor worsening of symptoms. Last year I received a first round of IVIG over 3 months (2g/kg over 5 days each month) and have been on 0.8 g/kg over two days on a biweekly basis. Follow up EMGs have shown either a slight improvement or steady results for the nerves tested, but nothing significant.
Has anyone had a similar experience with CIDP? Should I look into pursuing steroids and immunosuppressants in place of or in addition to IVIG? Is it possible that I have MMN or something like celiac disease? Has anyone’s doctor recommended a certain diet to help repair the damage caused by CIDP?
February 10, 2009 at 1:53 pm
sorry no info
AnonymousFebruary 11, 2009 at 10:59 am
You sound a lot like my daughter. She started with slow progression when she was 16, has foot drop with left side being a little worse than the right. She has atrophy in both hands though. This has only affected her from the knees down and the elbows down. Her tests show some sensory involvement, but she doesn’t have any numbness or tingling. She has been on IVIG for the past 2 1/2 years and CellCept for the past 1 1/2 years with no worsening or improvement. The doctors are baffled as they do not know if it is CIDP or CMT. We are going to be traveling to Johns Hopkins to see a CIDP specialist and also to Wayne State University to see a CMT specialist. I am very anxious to have the CMT specialist take a look at her. Doctors at the Mayo Clinic have said that she looks like someone with CMT. Hopefully we will be able to get a better diagnosis. Her CMT testing that was done three years ago and came back negative, but it could be a mutation. I really want to get her off the medications if it is not CIDP. My daughter is now 20.
AnonymousFebruary 12, 2009 at 1:07 pm
My progression was very slow in the beginning.
I was diagnosed with a peripheral neuropathy in 1989. No clear cause, no severe effects. It got only a little worse by 1995. In early 1999 I was having more noticeable problems with balance, numbness, and foot pains. I was diagnosed about a year later and began treatment. The progression continued. By 2001 the rate of decline accelerated to its maximum in 2005. Since 2005 I have stayed the same CIDP wise, but I have suffered more muscle tightening and pain since then.
If you heard everybody’s story they would all be different. Some have much shorter and rapid declines, and recoveries. The disease seems to function at different rates in different people.
As far as diet, you should eat healthy and in moderation. More weight puts extra stress on the body’s systems, and that is bad. Exercise in moderation, and never past the exhaustion point. Recovery from over-exertion will be slower and slower. A big asset is to keep your life stresses lower. The greater stress your body is under, the worse your neuropathy will be. Remember, the chain breaks at it’s weakest link.
You need to stay vigilant with your neuro. You need to ask him/her what their overall treatment goals are and how they expect to achieve them. Don’t push then, but question them. Read, Read, Read, Ask, poke and prod. Every neuro I have dealt with has appreciated my comments as they have come from a point of knowledge before emotion.
Sometimes the emotions do come through. Don’t get mad, just convey your point of view as best as possible.
Moderation, low stress, light toning exercises, moderate diet, read about herbals before you use them.
February 12, 2009 at 4:48 pm
sorry no info
AnonymousFebruary 16, 2009 at 1:21 pm
Just thought I’d add my 2 cents here too! I have had hyperactive reflexes for about 9 months after not having any reflexes for 2 1/2 years. I was tested for MS and it came back negative so I am attributing mine to “baby like” reflexes that are not developed fully yet. My neuro doesn’t seem concerned about them anymore. I just warn everyone to stand back when they check them! I could call them a weapon!
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