Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 we're working on finding the correct docket number, we'll have this info sometime today. Thankscan you please elaborate on your symptoms, I am not familiar with your diagnosis? To: miralax Sent: Tue, June 12, 2012 3:33:18 AMSubject: What action to take? Jeanie, I have been reading your posts since the article appeared in the NY Times. I would like to report my problems to the FDA, can you give me the link again? I have developed a neurological condition called demyelinating peripheral polyneuropathy, since taking Miralax. It is beginning to rescind since I stopped taking it in March. However, it has left me with probably permanent muscle loss in my hands due to atrophy, and nerve damage to many parts of my peripheral nervous system. I am convinced this was caused by the Miralax, but my doctors do not seem interested in hearing this. They have done a multitude of tests to determine the cause of this condition including lumbar puncture (spinal tap) for CSF tests, many blood tests, brain MRI, EMG's, etc. So at this point they can find no cause. However, it all started shortly after starting Miralax, and is relenting since stopping it. How do I report this to the FDA. I have to say Miralax works great, but at what price. I would have preferred to deal with constipation rather than this nerve damage I now have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Toxic neuropathy info link below... I have axonal and demyelinating type. That means it destroys muscle. http://emedicine.medscape.com/article/1175276-overview#showall we're working on finding the correct docket number, we'll have this info sometime today. Thankscan you please elaborate on your symptoms, I am not familiar with your diagnosis? To: miralax Sent: Tue, June 12, 2012 3:33:18 AM Subject: What action to take? Jeanie, I have been reading your posts since the article appeared in the NY Times. I would like to report my problems to the FDA, can you give me the link again? I have developed a neurological condition called demyelinating peripheral polyneuropathy, since taking Miralax. It is beginning to rescind since I stopped taking it in March. However, it has left me with probably permanent muscle loss in my hands due to atrophy, and nerve damage to many parts of my peripheral nervous system. I am convinced this was caused by the Miralax, but my doctors do not seem interested in hearing this. They have done a multitude of tests to determine the cause of this condition including lumbar puncture (spinal tap) for CSF tests, many blood tests, brain MRI, EMG's, etc. So at this point they can find no cause. However, it all started shortly after starting Miralax, and is relenting since stopping it. How do I report this to the FDA. I have to say Miralax works great, but at what price. I would have preferred to deal with constipation rather than this nerve damage I now have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 , this definitely needs to be reported immediately. Carol is working on this for us as we speak, did you make a report at MedWatch? This should be done asap. https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm 1-800-FDA-1088Once we get the docket number, we'll let everyone know...........Thanks To: miralax Sent: Tue, June 12, 2012 7:43:39 AMSubject: Re: What action to take? Toxic neuropathy info link below... I have axonal and demyelinating type. That means it destroys muscle. http://emedicine.medscape.com/article/1175276-overview#showall we're working on finding the correct docket number, we'll have this info sometime today. Thankscan you please elaborate on your symptoms, I am not familiar with your diagnosis? To: miralax Sent: Tue, June 12, 2012 3:33:18 AM Subject: What action to take? Jeanie, I have been reading your posts since the article appeared in the NY Times. I would like to report my problems to the FDA, can you give me the link again? I have developed a neurological condition called demyelinating peripheral polyneuropathy, since taking Miralax. It is beginning to rescind since I stopped taking it in March. However, it has left me with probably permanent muscle loss in my hands due to atrophy, and nerve damage to many parts of my peripheral nervous system. I am convinced this was caused by the Miralax, but my doctors do not seem interested in hearing this. They have done a multitude of tests to determine the cause of this condition including lumbar puncture (spinal tap) for CSF tests, many blood tests, brain MRI, EMG's, etc. So at this point they can find no cause. However, it all started shortly after starting Miralax, and is relenting since stopping it. How do I report this to the FDA. I have to say Miralax works great, but at what price. I would have preferred to deal with constipation rather than this nerve damage I now have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 , have you reviewed the adverse reactions in the files section? I've seen this reported several times? To: miralax Sent: Tue, June 12, 2012 7:43:39 AMSubject: Re: What action to take? Toxic neuropathy info link below... I have axonal and demyelinating type. That means it destroys muscle. http://emedicine.medscape.com/article/1175276-overview#showall we're working on finding the correct docket number, we'll have this info sometime today. Thankscan you please elaborate on your symptoms, I am not familiar with your diagnosis? To: miralax Sent: Tue, June 12, 2012 3:33:18 AM Subject: What action to take? Jeanie, I have been reading your posts since the article appeared in the NY Times. I would like to report my problems to the FDA, can you give me the link again? I have developed a neurological condition called demyelinating peripheral polyneuropathy, since taking Miralax. It is beginning to rescind since I stopped taking it in March. However, it has left me with probably permanent muscle loss in my hands due to atrophy, and nerve damage to many parts of my peripheral nervous system. I am convinced this was caused by the Miralax, but my doctors do not seem interested in hearing this. They have done a multitude of tests to determine the cause of this condition including lumbar puncture (spinal tap) for CSF tests, many blood tests, brain MRI, EMG's, etc. So at this point they can find no cause. However, it all started shortly after starting Miralax, and is relenting since stopping it. How do I report this to the FDA. I have to say Miralax works great, but at what price. I would have preferred to deal with constipation rather than this nerve damage I now have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Haven't reported to FDA. Will do that. , this definitely needs to be reported immediately. Carol is working on this for us as we speak, did you make a report at MedWatch? This should be done asap. https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm 1-800-FDA-1088Once we get the docket number, we'll let everyone know........... Thanks To: miralax Sent: Tue, June 12, 2012 7:43:39 AMSubject: Re: What action to take? Toxic neuropathy info link below... I have axonal and demyelinating type. That means it destroys muscle. http://emedicine.medscape.com/article/1175276-overview#showall we're working on finding the correct docket number, we'll have this info sometime today. Thankscan you please elaborate on your symptoms, I am not familiar with your diagnosis? To: miralax Sent: Tue, June 12, 2012 3:33:18 AM Subject: What action to take? Jeanie, I have been reading your posts since the article appeared in the NY Times. I would like to report my problems to the FDA, can you give me the link again? I have developed a neurological condition called demyelinating peripheral polyneuropathy, since taking Miralax. It is beginning to rescind since I stopped taking it in March. However, it has left me with probably permanent muscle loss in my hands due to atrophy, and nerve damage to many parts of my peripheral nervous system. I am convinced this was caused by the Miralax, but my doctors do not seem interested in hearing this. They have done a multitude of tests to determine the cause of this condition including lumbar puncture (spinal tap) for CSF tests, many blood tests, brain MRI, EMG's, etc. So at this point they can find no cause. However, it all started shortly after starting Miralax, and is relenting since stopping it. How do I report this to the FDA. I have to say Miralax works great, but at what price. I would have preferred to deal with constipation rather than this nerve damage I now have. Quote Link to comment Share on other sites More sharing options...
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