Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 << Peripheral only. Not related to CMT. It gets so frustrating!!! So how is one to know what is actually fact? >> Good point. There is not total agreement in the medical community yet. Truly frustrating for the CMTers. However they mostly agree that the phrenic nerve can be affected. It has to do with breathing, diphragm, and all that. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Keep speaking up on HOW you are affected! We are seeing more and more references to problems with breathing in some types of CMT. Considering how many different types there are, and how many separate genes are causing the defect, it only makes sense that some rarer types that are not yet classified down to a specific gene will have problems that are not yet documented and recognized on a broad spectrum. Recognizing that these rarer problems exist is one of the benefits of using a world-wide forum like CMTUS via the internet. Sooner or later the medical community will take notice. >From: KathleenLS@... >Reply-To: CMTUS (AT) onelist (DOT) com >To: CMTUS (AT) onelist (DOT) com >Subject: Re: life threatening >Date: Thu, 3 Feb 2000 00:53:01 EST > >From: KathleenLS@... > > > > ><< Peripheral only. Not related to CMT. It gets so frustrating!!! So how >is >one to know what is actually fact? >> > >Good point. There is not total agreement in the medical community yet. >Truly >frustrating for the CMTers. However they mostly agree that the phrenic >nerve >can be affected. It has to do with breathing, diphragm, and all that. > >Kat > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 << Keep speaking up on HOW you are affected! We are seeing more and more references to problems with breathing in some types of CMT. Considering how many different types there are, and how many separate genes are causing the defect, it only makes sense that some rarer types that are not yet classified down to a specific gene will have problems that are not yet documented and recognized on a broad spectrum. Recognizing that these rarer problems exist is one of the benefits of using a world-wide forum >> I agree that we need to speak up. While it is true that specific problems some CMTers have may NOT be related to their CMT, in other CMTers they may be directly related. We are all different, and we should not be summarily brushed off by physicians who for some unknown reason have what my husband refers to as " A Need NOT to Know. " Some of them still deny CMT can cause pain, so I KNOW some of them are not learning or paying attention to individual differences or tuning into research. Kat >^.^< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Once again-- frustrating!! I have sleep apnea and I was told by a neurologist, it was not possible to be related. Becca http://www.onelist.com/subscribe/CMTweightmanagement Quote Link to comment Share on other sites More sharing options...
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