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I just received my Patient Medical Alert card from the Charcot-Ma...

Posted at 12: 8 AM on Oct 30, 2008 by debbie9, #36116
I just received my Patient Medical Alert card from the Charcot-Marie-Tooth Association. It is a wallet size card for me to carry with me that list drugs that have or possibly have severe side affects for people with CMT. Seeing MACROBID on it reminded me of my experience with it about 10 years ago. I am very prone to UTIs. My GYN prescribed MACROBID. After only 1 pill, my right thumb went numb. It spread to my index finger and then my middle finger. I was scared and called my GYN who told me there was no way that the Macrobid was the cause. I didn't stop with that answer. I then called the drug store, where I purchased it from and spoke to the pharmacist. I explained what was happening. He also told me that the Macrobid couldn't be the problem. I didn't take his answer and asked him to please get the contra -indications list and read it. There, in fine print, was possible peripheral numbness that can lead to death. I had 4 small children at the time, so you can imagine my horror. He contacted the pharmaceutical company that makes MACROBID. They called me to record my side effect and told me to NEVER take it again, that I could die if I did. It took several weeks for the feeling to come back in my fingers and hand. They had told me it could have been permanent. I didn't know I had CMT then. And this little card didn't exist then. I am writing this to warn others. If you don't know what CMT is, go to ******. It is a neurological degenerative disease. I am affected worse in my hands. I have a postural tremor in both hands now. I hope my story helps someone.
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Reply about 1 year ago on Oct 30, 2008 by auntpeggy, #13994

wow! thank you. i have cmt also and never knew that. i will also get a medical alert card.....just think you may have just saved my life!

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Reply about 1 year ago on Oct 30, 2008 by debbie9, #14007
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Reply about 1 year ago on Oct 31, 2008 by debbie9, #14009

Thank you for letting me know that I may have been a help. It was only by chance, that I saw this site and put my posing on it. The address for the CMTA is www.cmta.org. I don't know where you live, but there are Support Groups all over for CMT sufferers. Also, this year, in honor of their 25th anniversary, you can sign up to recieve The CMT Report from the CMT Association. Their address is: CMTA, 2700 Chestnut Parkwasy, Chester, PA 19013. Email address is info@charcot-marie-tooth.org. I am happy to help you! :)

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Reply 11 months ago on Dec 01, 2008 by aturnerlloyd2615, #14937

Took macrodbid for a UTI on Nov 4th. My symtoms are severe neuropathy in both hands and feet. Pain starting through body and I have been off the meds for for two weeks. Running to primary care for help!

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