Guest guest Posted July 27, 1999 Report Share Posted July 27, 1999 Re: Robin's post As another reader pointed out, Carly's clothing and texture sensitivities and even fears about her peers may be a result of a sensory integration difficulty which is treated by an occupational therapist. Look at The Out of Sync Child by Carol Stock Kranowicz for description of SI dysfunction and a questionnaire to assess whether this fits. Children with these difficulties are basically having difficulty gating out certain sensory messages- e.g., sticky, tight, contact etc- and this can lead to anxiety and avoidance. OT is very helpful in treating children with these difficulties- especially young children. In terms of the separation anxiety- this also may be exacerbated by the SI issues (if they are there). Meanwhile, when a task is too hard, make it smaller. I have families start with " in-house " separations, e.g., can Carly go upstairs with out you- can she spend time in her room when you are downstairs, etc. A good book for anxiety basics is Dr. Katharina Manassis, Keys to Parenting Your Anxious Child, in the Barrons Parenting Series. Also, it's OK if Carly argues with you about Miss Picky Pants- this is the age of normal oppositional behavior- so she is going to need to say no and disagree. Ask her for another name, or just let it go- focus on what she wants to be doing instead. Re: School aged children with OCD The statistic that is often quoted for OCD is 1 in 200 school children have OCD. Overall estimates for OCD in the US are 1 million children. Re: Behavior Therapy " Slump " Sometimes when a child is tiring of the hard work in behavior therapy, it's time to take stock of the goals already reached- have a party, a special dinner, a special treat to help jump start momentum for the next phase. Does your son's behavior therapist know that his interest is waning? Perhaps together you can decide on reasonable acknowledgements for success. I think that incentives and rewards can work very well for some kids- they are not bribes, they are earned by your child's hard work. Re: Luvox problems Someone mentioned a child on 25 mg of Luvox. While everyone wants a child to be on the lowest effective dosage of a medication, average Luvox dosages are significantly higher:200 mg, range- 100-300this is reported in the Journal of Clinical Psychiatry 1997 Expert Consensus Guidelines for OCD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 1999 Report Share Posted December 16, 1999 The following is from Dr. Gerson's website http://www.gerson.com A very important part of the Gerson Therapy is frequent detoxification of the tissues and blood. This is accomplished through a variety of means, first and foremost through the use of coffee enemas. The scientific basis for the use of coffee enemas is well documented, and can be obtained from the Gerson Institute. Patients report that the enemas decrease pain and hasten healing. Biologically, enzyme systems of the gut wall and liver are stimulated, and bile flow is increased. This has been shown to enhance the body's ability to eliminate toxic residues from environmental, chemotherapeutic, and other sources. Tumor and other diseased tissue is also more rapidly eliminated as it is broken down. >___________________________________________________________________________ ____ > >Message: 7 > Date: Wed, 15 Dec 1999 17:09:57 -0500 > From: " Holly " <dio7g@...> >Subject: Re: Coffee enema > >I consider it very important and that 40% more >stones and junk are expelled if you do one as >part of the program. > >It is a strong coffee enema with about 4 tablespoons of coffee. >Made the night before. Boil/simmer for 15 minutes. >It also has 4 tablespoons of Epsom salts dissolved >in it. One quart of water. > >Enema done when you wake up the next day. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 1999 Report Share Posted December 16, 1999 While this is true, and I am most definitely NOT 'against' the use of coffee enemas for purposes of detoxification, there is a healthier alternative for anyone who might be interested... Wheatgrass juice enemas. Although there are no official studies comparing these to coffee enemas, Anne Wigmore claims in one of her books (can't remember which one offhand) that the use of wheatgrass juice is even MORe stimulating to the liver than coffee. Personally, I have done it once, and it was VERY invigorating. ----- Original Message ----- From: <lraskin@...> <gallstonesonelist> Sent: Thursday, December 16, 1999 9:31 AM Subject: Re: Digest Number 174 > From: lraskin@... > > The following is from Dr. Gerson's website http://www.gerson.com > > A very important part of the Gerson Therapy is frequent detoxification of > the tissues and blood. This is accomplished through a variety of means, > first and foremost through the use of coffee enemas. > > The scientific basis for the use of coffee enemas is well documented, and > can be obtained from the Gerson Institute. <snip> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2000 Report Share Posted February 27, 2000 Good Morning To all and Welcome to all the new ones to the list! I have response to several of the posts lately. GRETCHEN: I fall forward most of the time when I fall and I usually turn something. Recently, fractured my great toe on right foot in two places. My knees crackle and pop allot; feels like they are going to " buckle " and do sometimes and I go down. Lately, I have trouble getting out of bed every morning because it seems my lower back is out after sleeping. (can't stand up and walk and have hard time getting off bed or chair) I'm wondering if this might be a problem due to muscle atrophy causing more tightness in the tendons and ligaments which make me very stiff in the mornings until I get every thing stretched out again. The pain in the lower back can last for several hours after I get up, but seems the more I get up and move (getting it stretched out) it leaves. Just very painful to move so its hard! But, then same thing again next morning. This started happening after I fell and broke my toe, and thought because I had to stay off feet and just sitting mostly maybe allowed muscles to atrophy causing the tendons to draw more and just hard to keep them stretched with muscle changes that have possibly happened. Also it seems like my lower legs are weaker and I'm stressing my knees and thighs more now, my legs are tender to the touch all over and knees ache and feel like someone took a ball bat to them when I walk. I have a pending order in for a Jazzy Power chair, but Medicare only pays 80% and I can't afford the other 20% our of my family budget. No other insurance. I have contacted MDA to help me with the rest but I have never seen one of their Physicians and they require you get a prescription from their own physicians in order to get help with them. I'm not scheduled to see the doc (MDA is slow to get you in Here) until Mar. 28 and that is awhile yet to keep dealing with the pain. Also, I don't know if they will put me through lots more testing before giving me a prescription or just look at me and talk to me to determine my need. My physician wanted me to get a chair back in early Sept this year and I've put off using the prescription till now but I am seeing the need at least for part of the time. After I get MDA approval it will still take three more weeks to get it. Also, for the use of the chair in the kitchen, do any of you know if MDA will approve paying for a chair with a lift seat? Medicare won't deem it a necessity and won't pay on that and it is another $998 added to an already $6000 chair MOL. I know I won't get help one nether one for at least 5 to 7 yrs so I need to get all options I may need in that time for progression seems to have escalated for me and hasn't slowed in two years. I have great weakness in forearms and wrist and hands aware very difficult to use; so I feel in my case the lift would me needed greatly to function. Any ideas on other sources of help for that other 20% would be appreciated in case MDA won't help me. Here is a link sent to me by a Disabled parent of two young children like myself; She has CP and a very good support for me. Her children are the same ages as mine so its been good to have her share how she gets everything done that a mother has to do for young ones. http://www.familyvillage.wisc.edu/index.htmlx Thought there might be some of you who would enjoy this site and its suggestions and helps. I've bookmarker it too. On the subject of Disabled housing I've appreciated the input from all of you as to pros and cons; My husband is a builder and we are trying to sell our house and build a more efficient home for my condition but keeping in mind the resale value and appeal too. We are looking into stair lifts because it is more efficient to build a multi-level home by having more use of the square footage under less roof. But, also considering that even people who aren't physically challenged don't like to climb stairs ( we or more spoiled and sedentary in today's times) on a daily basis. so, it helps to hear how all of you feel and what you would consider; for this is all new to me! I used to love a multi-level home for my daily work out was built in to daily living but I have to realize not everyone looks at it this way. KIM: My hands were the first thing to go; or at least I noticed the problems with them more. I just accepted the problems with my feet and legs from the beginning because I'd had mild trouble as a very young child and had learned to compensate and adapt and even think of it as " normal " for me. When I started getting severe muscle wasting in the hands and others started noticing them and asking what was wrong with them, I begin to realize it wasn't normal. But, even then I thought it was arthritis. But, I would consider anything you have to do repetitive with your hands to be a concern for it will stress that area more which in theory can and will cause more progression. I was a commercial window cleaner with my own business for over ten years and this really took a toll on my hands. I am barely able to write a check and get it signed before my hand cramps and freezes or locks on me. I can't take or pick up coins out of my change purse so I use mostly bills and empty change into kids piggy banks when it gets too full! LOL Kids love that ! And typing is a frustration for me, and causes my hands to hurt and ache severely! There are ways to over come any obstacle but it might pose a bigger challenge in finding it than the challenge your originally started with. . so just consider whether you have the energy to expend in any endeavor. " Count the cost before pursuing. " Okay this was a long winded reply but I did cover many subjects. TTYL L Libby " TODAY IS A GIFT. . TOMORROW ISN'T A PROMISE! MAKE THE MOST OF THE PRESENT! FOR TOMORROW MAY NEVER COME! " __________________________________________ NetZero - Defenders of the Free World Get your FREE Internet Access and Email at http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2000 Report Share Posted February 27, 2000 -----Original Message----- From: Libby Bond <charnicoma@...> onelist <onelist> Date: Sunday, February 27, 2000 9:53 AM Subject: Re: [] Digest Number 174 >From: " Libby Bond " <charnicoma@...> > >My knees crackle and pop allot; feels like they are going to " buckle " and do >sometimes and I go down. > >Lately, I have trouble getting out of bed every morning because it seems my >lower back is out after sleeping. (can't stand up and walk and have hard >time getting off bed or chair) I'm wondering if this might be a problem due >to muscle atrophy causing more tightness in the tendons and ligaments which >make me very stiff in the mornings until I get every thing stretched out >again. Libby, last week my Dr. gave me knee braces to wear in addition to my afos because, I have lost so much more muscles in my legs that my knee joints are stressed and the knee caps slip and slide! He alos said I have lost more thigh muscles, it is getting harder to walk any distance, my legs tire and hurt. As to your back, I think you are correct about the muscles and atrophy and tendons stress due to atrophy of those muscles, I have had more back problems, cramps, achinging stiffness this past 2 months, I too cannot get out of bed at first, there is stiffness and pain. It is harder to raise my self out of a chair. It gets better about mid-morning, then starts in again later in the day. The more I do the worse it gets. It makes sense that when we loose one muscle, the other remaining ones are stressed. I am trying to stay out of the KAFO's my Dr. had wanted me to get them several months ago. This is uncomfortable enough, I don't like these knee support things! <Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2000 Report Share Posted February 27, 2000 In a message dated 2/27/00 6:11:39 PM Pacific Standard Time, klydesid@... writes: << What I really would like feedback about is whether or not there are others among you who have experienced the sort of extended " progression-free " periods of time I have had and if there are others who have had only affected feet and legs...? ANY feedback would be great. Thanks. M >> I had no progression for years. I felt so good. Now the stress of my life has kicked up my weakness and I am about to get AFOs. . I am 31. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Hi everyone. Marc here. I read and read everyone's thoughtful and useful entries, and I am inspired by the sharing I've found here, but I have a question which stays in the front of my mind. It is this: Has everyone experienced an on-going progression, in regards to symptoms? I am asking because I have experienced very little progression in the last twenty+ years. It seems I was hit hard at a young age (probably around five or younger and it progressed until I was between sixteen and eighteen. I was falling constantly due to increasing weakness and affected balance in those days. By the time I was fourteen I was using AFOs and forearm crutches (I still use the crutches but threw out the AFOs because they caused sores and I wanted to maintain the muscle strength I had). In addition to my question about continuous progression, I am curious about " the hand/feet thing " (my term). I don't really have much trouble with my hands (thank God - using the crutches would get tricky;0) ). But my feet and legs are relatively severely affected. What I really would like feedback about is whether or not there are others among you who have experienced the sort of extended " progression-free " periods of time I have had and if there are others who have had only affected feet and legs...? ANY feedback would be great. Thanks. M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Yes, , stress is a killer! ............................................................................. .... > >> > I had no progression for years. I felt so good. Now the stress of my life has > kicked up my weakness and I am about to get AFOs. . I am 31. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Marc, I was diagnosed at 6, and have always had slow mild progression until the last year or so. I would typically notice a 6-9 month period of slight progression and then stay stable for 2-3 years. This has been my pattern untill I turned the wonderful age of 40! Now, at 41, I am noticing progression occuring more quickly and more constant. In addition to progression in my feet and recently hands, I am noticing a hearing loss and in the last 6 months I have noticed problems with my voice. My father (with CMT) also had a significant hearing loss. Not sure about the voice thing but it does seem odd that I am losing my voice in my early 40's... I will be discussing this with the MDA docs at my next visit this spring. It's (my voice) just not there all the time anymore. Like my legs and hands, sometimes they work, sometimes they don't. CMT is SO variable, no two cases seem to be exactly alike. Even in my own family there is a wide range of specific symptoms. Ruth >From: " Regan, MD " <klydesid@...> >Reply-onelist ><onelist> >Subject: Re: [] Digest Number 174 >Date: Sun, 27 Feb 2000 18:10:47 -0800 > >From: " Regan, MD " <klydesid@...> > >Hi everyone. Marc here. > >I read and read everyone's thoughtful and useful entries, and I am inspired >by the sharing I've found here, but I have a question which stays in the >front of my mind. It is this: Has everyone experienced an on-going >progression, in regards to symptoms? I am asking because I have experienced >very little progression in the last twenty+ years. It seems I was hit hard >at a young age (probably around five or younger and it progressed until I >was between sixteen and eighteen. I was falling constantly due to >increasing >weakness and affected balance in those days. By the time I was fourteen I >was using AFOs and forearm crutches (I still use the crutches but threw out >the AFOs because they caused sores and I wanted to maintain the muscle >strength I had). > >In addition to my question about continuous progression, I am curious about > " the hand/feet thing " (my term). I don't really have much trouble with my >hands (thank God - using the crutches would get tricky;0) ). But my feet >and >legs are relatively severely affected. > >What I really would like feedback about is whether or not there are others >among you who have experienced the sort of extended " progression-free " >periods of time I have had and if there are others who have had only >affected feet and legs...? > >ANY feedback would be great. Thanks. > M > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 In a message dated 2/28/00 9:47:03 AM Pacific Standard Time, juliannefisher@... writes: << I would say that I've had long periods of time with no progression, looking back, up to 10 years at a time. nne >> me too jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 I too had problems with voice cracking and going hoarse- i went to a nose throat specialist and he discovered i had a paralysed vocal cord- and yes its cmt related- phrenic nerve thing- hope this helps Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Hi Marc -- I was not diagnosed until mid-forties, but as a kid I always laughed at my curly toes and extremely high arches. I could barely walk through a room without my feet connecting with a chair leg or something left on the floor. I also had so much pain from leg cramps. My hands have always been a little weak but I'm now having more problems with them. However, I would say that I've had long periods of time with no progression, looking back, up to 10 years at a time. nne -----Original Message----- From: Regan, MD <klydesid@...> onelist <onelist> Date: Sunday, February 27, 2000 6:10 PM Subject: Re: [] Digest Number 174 >From: " Regan, MD " <klydesid@...> > >Hi everyone. Marc here. > >I read and read everyone's thoughtful and useful entries, and I am inspired >by the sharing I've found here, but I have a question which stays in the >front of my mind. It is this: Has everyone experienced an on-going >progression, in regards to symptoms? I am asking because I have experienced >very little progression in the last twenty+ years. It seems I was hit hard >at a young age (probably around five or younger and it progressed until I >was between sixteen and eighteen. I was falling constantly due to increasing >weakness and affected balance in those days. By the time I was fourteen I >was using AFOs and forearm crutches (I still use the crutches but threw out >the AFOs because they caused sores and I wanted to maintain the muscle >strength I had). > >In addition to my question about continuous progression, I am curious about > " the hand/feet thing " (my term). I don't really have much trouble with my >hands (thank God - using the crutches would get tricky;0) ). But my feet and >legs are relatively severely affected. > >What I really would like feedback about is whether or not there are others >among you who have experienced the sort of extended " progression-free " >periods of time I have had and if there are others who have had only >affected feet and legs...? > >ANY feedback would be great. Thanks. > M > > >------------------------------------------------------------------------ >Get what you deserve with NextCard Visa! Rates as low as 2.9% >Intro or 9.9% Fixed APR, online balance transfers, Rewards Points, >no hidden fees, and much more! Get NextCard today and get the >credit youdeserve! Apply now! Get your NextCard Visa at: >1/912/1/_/616793/_/951703807/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Hi Marc, I was diagnosed with CMT at 39 years of age and up till that time I could do just about anything even though it was a bit clumsily. At age 40, things changed quite rapidly which I think mainly was due to stress due to ending a 20 year marriage and dealing with all the garbage that comes with that and trying to raise three kids by myself. I was diagnosed with CMT type 1. I now wear AFO's for work and can not believe how weak my legs have gotten in the past two years. My hands are starting to get weaker also. I am a mutation as there is no one in my family that has this disease. I am definitely a believer that stress can wreak havoc where CMT is concerned. That is just my two cents worth. Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Thanks Elena, I thought I had read info recently that the voicebox could be affected. At least I don't rely on my voice to make a living!!!! So I guess it just gets added to the list of challenges that make life interesting. I've got to admit, I'm never bored!!!!! By the way, how far has the voice thing progressed in your case? Ruth >From: whackomom@... >Reply-onelist >onelist >Subject: Re: [] Digest Number 174 >Date: Mon, 28 Feb 2000 17:07:12 EST > >From: whackomom@... > >I too had problems with voice cracking and going hoarse- i went to a nose >throat specialist and he discovered i had a paralysed vocal cord- and yes >its >cmt related- phrenic nerve thing- hope this helps >Elena > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 so far only one side is affected- I have not had the guts to ask if the other side may become affected as well. I am not sure I want to know the answer LOL Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2000 Report Share Posted February 29, 2000 In a message dated 2/28/00 3:27:34 PM Pacific Standard Time, Buchie54@... writes: << I am definitely a believer that stress can wreak havoc where CMT is concerned. That is just my two cents worth. Betty >> Me too jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2000 Report Share Posted March 1, 2000 Hi Marc, Peggie here. I had at least 20 years with virtually no progression. Then had some, then went about 8 years with none. Then the big one hit! I know it is different for all, but, yes, you can go for many many years without getting any worse.!! ----- Original Message ----- From: Regan, MD <klydesid@...> <onelist> Sent: Sunday, February 27, 2000 6:10 PM Subject: Re: [] Digest Number 174 > From: " Regan, MD " <klydesid@...> > > Hi everyone. Marc here. > > I read and read everyone's thoughtful and useful entries, and I am inspired > by the sharing I've found here, but I have a question which stays in the > front of my mind. It is this: Has everyone experienced an on-going > progression, in regards to symptoms? I am asking because I have experienced > very little progression in the last twenty+ years. It seems I was hit hard > at a young age (probably around five or younger and it progressed until I > was between sixteen and eighteen. I was falling constantly due to increasing > weakness and affected balance in those days. By the time I was fourteen I > was using AFOs and forearm crutches (I still use the crutches but threw out > the AFOs because they caused sores and I wanted to maintain the muscle > strength I had). > > In addition to my question about continuous progression, I am curious about > " the hand/feet thing " (my term). I don't really have much trouble with my > hands (thank God - using the crutches would get tricky;0) ). But my feet and > legs are relatively severely affected. > > What I really would like feedback about is whether or not there are others > among you who have experienced the sort of extended " progression-free " > periods of time I have had and if there are others who have had only > affected feet and legs...? > > ANY feedback would be great. Thanks. > M > > > ------------------------------------------------------------------------ > Get what you deserve with NextCard Visa! Rates as low as 2.9% > Intro or 9.9% Fixed APR, online balance transfers, Rewards Points, > no hidden fees, and much more! Get NextCard today and get the > credit youdeserve! Apply now! Get your NextCard Visa at: > 1/912/1/_/616793/_/951703807/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2000 Report Share Posted March 2, 2000 Hi, Peggy. Thanks for the feedback. Can you tell me what the " progression periods " consisted of? Especially the " big one " ? Just curious. It might prove useful info. Keep smiling. Marc > Hi Marc, Peggie here. I had at least 20 years with virtually no > progression. Then had some, then went about 8 years with none. Then the > big one hit! I know it is different for all, but, yes, you can go for many > many years without getting any worse.!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2000 Report Share Posted March 2, 2000 Hi Marc! Peggie here. I think that the " big one' was brought on by major stress.... and for years, did not have any idea what brought it on. The first two major progression were both due to toxic meds. The last one, had no idea, until listening to everyone on CMT . So, have decided it must have been brought on by stress. Worked a very stressful job, but then, I had for most of 10 years..... but then had more personal stress along with the major job stress. Also got the shooting nerve pain with the last on set. No one in my immediate family had this.... and I bragged for years that CMT was at least " Pain Free " !!! Boy, was I lucky all those years to have very little pain! Then came paybacks... but thankfully Amitriphine is a great help on that. So, don't know if this will help you or not, as I can only put two and two together to come up with this. But, many people have spoke about major stress bringing on major symptoms, and I feel this is very true in my case also. So, try to avoid having a stressful life!!!! Have a great day! ----- Original Message ----- From: Regan, MD <klydesid@...> <onelist> Sent: Wednesday, March 01, 2000 8:38 PM Subject: Re: [] Digest Number 174 > From: " Regan, MD " <klydesid@...> > > Hi, Peggy. Thanks for the feedback. Can you tell me what the " progression > periods " consisted of? Especially the " big one " ? Just curious. It might > prove useful info. Keep smiling. Marc > > > > Hi Marc, Peggie here. I had at least 20 years with virtually no > > progression. Then had some, then went about 8 years with none. Then the > > big one hit! I know it is different for all, but, yes, you can go for > many > > many years without getting any worse.!! > > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2121/5/_/616793/_/951971749/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2000 Report Share Posted March 3, 2000 Yes, Peggy, I agree stress is a killer! I was wondering what kind of symptoms you had when you experienced the progression coming back. This is helpful info for me so if I'm feeling something I might not just try to ignore it (I'm pretty good at ignoring). Thanks, Marc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2000 Report Share Posted March 3, 2000 Yes, Peggy, I agree stress is a killer! I was wondering what kind of symptoms you had when you experienced the progression coming back. This is helpful info for me so if I'm feeling something I might not just try to ignore it (I'm pretty good at ignoring). Thanks, Marc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2000 Report Share Posted March 4, 2000 Hi Marc. Peggie here. It's kind of hard to remember.... but, along with the shooting nerve pain that danced all over my body, I also had great fatique - just did me in to get to work and in half an hour, was exhausted for the day. Also had vibrating numbness that keep me from typing on electric typewiter, as made it unbearable. Legs quit working, numbness all over. Was just about all the CMT symtoms all at once. I guess I could tell you that when you are exhausted after getting up and dressed, that would be a good indication you are heading for trouble. I could tell I was worse almost each day... meaning each day I was a little worse then the day before. And I kept pushing it - for a few months. When you are fighting that hard, and have that much pain, along with the fatique, you need to STOP what you are doing EVERYTHING, and regroup. I think if I hadn't kept on for at least 3 months after it got real bad, it probably wouldn't have exclerated as bad as it did. I can tell you, that after I quit my job, and got rid of that stress, a month or so later, I did feel like a new person. Many people claim you don't have any improvements when you have CMT, but, I know that I have had improvements. Of course, the shooting nerve pain was about he worse thing of it's self, and the amitripline took care of that (and still does mostly), and the relief of fighting that pain helped relieve some of the other symtoms. So, if you get beat, slow down and take a break and if you can tell the difference, then you know that it helped you. All my symtoms were all over my body, so I can't say any one thing..... Have a great week end! ----- Original Message ----- From: Regan, MD <klydesid@...> <onelist> Sent: Thursday, March 02, 2000 10:59 PM Subject: Re: [] Digest Number 174 > From: " Regan, MD " <klydesid@...> > > Yes, Peggy, I agree stress is a killer! > > I was wondering what kind of symptoms you had when you experienced the > progression coming back. This is helpful info for me so if I'm feeling > something I might not just try to ignore it (I'm pretty good at ignoring). > Thanks, Marc > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2121/5/_/616793/_/952066628/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2000 Report Share Posted May 16, 2000 In a message dated 5/16/00 4:11:09 AM Pacific Daylight Time, egroups writes: << drinking wine >> hehe...make that WHITE wine, please! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Good morning, I have lost the notice regarding migrant transportation safety. For that person, there was an auto accident in which 6 farmworkers lost there lives and 3 others are seriously injured in Hardee Co. Fla. yesterday morning. I am not certain of the "worthiness" of these incidents on a national basis so will pas the reality along. Keep up the good work on this worthwhile project! Dean Blietz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 HI i wasnt able to read this digest. after i downloaded it, i got an error saying this file is too large to view?? can you send it to me another way, there are topics in this digest i'd love to read. thank you Lori Quote Link to comment Share on other sites More sharing options...
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