Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 In a message dated 2/12/2001 11:41:52 PM Pacific Standard Time, scotcmjml@... writes: > Carolyn[iAM 33YRS OLD]. > > > I Carolyn I am 33 years old. I have 5 children so far 3 have CMT. How many children do you have? Jennt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 -----Original Message----- From: scotcmjml@... <scotcmjml@...> < > Date: Tuesday, February 13, 2001 1:35 AM Subject: [] just diagnosed >>>>>>Hello Carolyn, welcome this is a great place for information. Ask questions, read the archives we have. I have type 2 CMT. My 10 year old son has it. I have 3 children, 49 married. I'm getting to see some of the outback area of Australia by watching that dumb show Survivors! LOL. Check out the links page at , lots of good links for information there to. How many children do you have? You mention the CMT has gotton worse with each child, ~>Becky M. >just been told that my son who is thirteen has type 2 and that he got >it from me his mother i have had all sorts of test and i have sought >an answer since i was thirteen why one day i could walk up stairs one >day then couldn't the next it seemed to get worse after each child >now i have lost feeling in my left foot i fall over alot the tremors >zap my body of all its strength i would like as much information from >all sources as in Australia there isnt that much awareness any help >would be great thanking you Carolyn[iAM 33YRS OLD]. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 Carolyn, Lamar here, Welcome to the group. If you are not familiar with it, you could probably find area information from the CMT Association of Australia. http://www.ultranet.com/~smith/CMTAA.html The site gives membership information, support groups there, and information on their publications. ----- Original Message ----- From: scotcmjml@... Sent: Tuesday, February 13, 2001 02:38 AM Subject: [] just diagnosed just been told that my son who is thirteen has type 2 and that he got it from me his mother i have had all sorts of test and i have sought an answer since i was thirteen why one day i could walk up stairs one day then couldn't the next it seemed to get worse after each child now i have lost feeling in my left foot i fall over alot the tremors zap my body of all its strength i would like as much information from all sources as in Australia there isnt that much awareness any help would be great thanking you Carolyn[iAM 33YRS OLD]. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 Carolyn, perhaps asking specific questions of the group would help us know what you're looking for. We have a variety of symptoms and backgrounds. I know of CMTers in the Sydney, Adelaide and Perth areas, by the way. Kat Seattle USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 Hi Lamar Iam still trying to find out as much as i can about this cmt . There isnt that much info around about it. Thanks Carolyn. --- Lamar son <lls@...> wrote: <HR> <html><body> <tt> Carolyn,<BR> Lamar here,<BR> Welcome to the group. & nbsp; If you are not familiar with it, you could probably<BR> find area information from the CMT Association of Australia.<BR> <a href= " http://www.ultranet.com/~smith/CMTAA.html " >http://www.ultranet.com/~smith/\ CMTAA.html</a> & nbsp; The site gives membership<BR> information, support groups there, and information on their publications.<BR> & nbsp; ----- Original Message -----<BR> & nbsp; From: scotcmjml@...<BR> & nbsp; <BR> & nbsp; Sent: Tuesday, February 13, 2001 02:38 AM<BR> & nbsp; Subject: [] just diagnosed<BR> <BR> <BR> & nbsp; just been told that my son who is thirteen has type 2 and that he got<BR> & nbsp; it from me his mother i have had all sorts of test and i have sought<BR> & nbsp; an answer since i was thirteen why one day i could walk up stairs one<BR> & nbsp; day then couldn't the next it seemed to get worse after each child<BR> & nbsp; now i have lost feeling in my left foot i fall over alot the tremors<BR> & nbsp; zap my body of all its strength i would like as much information from<BR> & nbsp; all sources as in Australia there isnt that much awareness any help<BR> & nbsp; would be great thanking you Carolyn[iAM 33YRS OLD].<BR> <BR> <BR> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; Groups Sponsor<BR> <BR> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & n\ bsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; www. & nbsp; .com<BR> <BR> <BR> <BR> <BR> & nbsp; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 Hi Becky Iam still trying this computer so please excuse the format.I have three children 2boys 3 & 13,and a girl 7. I lost feeling in my left leg after having my last child it is told to me that the interference from the spinals did not help this.I think the hardest battle is that i gave this to my son and didnt know i had this thing called cmt.The tremors i have had since thirteen years my mother used to worry about me at dinner that i didn't stab myself with my fork.[but things could be worse] Take care Carolyn. --- Maxwell <rmax@...> wrote: <HR> <html><body> <tt> <BR> -----Original Message-----<BR> From: scotcmjml@... & lt;scotcmjml@... & gt;<BR> & lt; & gt;<BR> Date: Tuesday, February 13, 2001 1:35 AM<BR> Subject: [] just diagnosed<BR> <BR> & gt; & gt; & gt; & gt; & gt; & gt;Hello Carolyn, welcome this is a great place for information. Ask<BR> questions, read the archives we have. I have type 2 CMT. My 10 year old son<BR> has it. I have 3 children, 49 married. & nbsp; I'm getting to see some of the<BR> outback area of Australia by watching that dumb show Survivors! LOL. & nbsp; Check<BR> out the links page at , lots of good links for information there to.<BR> How many children do you have? & nbsp; You mention the CMT has gotton worse with<BR> each child, ~ & gt;Becky M.<BR> <BR> & gt;just been told that my son who is thirteen has type 2 and that he got<BR> & gt;it from me his mother i have had all sorts of test and i have sought<BR> & gt;an answer since i was thirteen why one day i could walk up stairs one<BR> & gt;day then couldn't the next it seemed to get worse after each child<BR> & gt;now i have lost feeling in my left foot i fall over alot the tremors<BR> & gt;zap my body of all its strength i would like as much information from<BR> & gt;all sources as in Australia there isnt that much awareness any help<BR> & gt;would be great thanking you Carolyn[iAM 33YRS OLD].<BR> & gt;<BR> & gt;<BR> & gt;<BR> & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 Carolyn, Lamar here, I assure you there is a lot of information available about CMT. If you go to the pages of links you will find a lot more. As to information about AU, the site I gave and http://www.mda.org.au/ are the ones I am aware of. ----- Original Message ----- From: Mark Scotney Sent: Friday, February 16, 2001 06:48 AM Subject: Re: [] just diagnosed Hi Lamar Iam still trying to find out as much as i can about this cmt . There isnt that much info around about it. Thanks Carolyn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 Hi Carilyn, nice to meet you. I am 40 and a mother of 2. I have a question for you.... You said you lost feeling in your left leg after having your last child. I take it that you had a spinal while giving birth? (yes, no?) The reason I ask is because I have a 2nd cousin that was paralized from the waist down after having a spinal when delivering her daughter. She was only paralized for about 6 months but then got her feeling back, thank the lord. Her Dr. told her it was because of the CMT with the spinal... Knowing this I did not have a spinal with either of my kids. The 1st baby I didn't have any medication (but I sure did want it), the 2nd baby I had medication.... Regi *************** *************** > -----Original Message----- > From: scotcmjml@y... > scotcmjml@y... > @y... > @y... > Date: Tuesday, February 13, 2001 1:35 AM > Subject: [] just diagnosed > Hello Carolyn, welcome this is a great place for information. Ask questions, read the archives we have. I have type 2 CMT. My 10 year old son has it. I have 3 children, 49 married. I'm getting to see some of the outback area of Australia by watching that dumb show Survivors! LOL. Check out the links page at , lots of good links for information there to. How many children do you have? You mention the CMT has gotton worse with each child, Becky M. ************************ ************************* just been told that my son who is thirteen has type 2 and that he got it from me his mother i have had all sorts of test and i have sought an answer since i was thirteen why one day i could walk up stairs one day then couldn't the next it seemed to get worse after each child now i have lost feeling in my left foot i fall over alot the tremors zap my body of all its strength i would like as much information from all sources as in Australia there isnt that much awareness any help would be great thanking you Carolyn[iAM 33YRS OLD]. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 .. Hi Regi I din;t know that i had cmt until my son got his diagnosis.When my first child was born in 87 i had know interference with my spinal area,I had an emergency c section,when my second child was born in 93 i had a spinal which my legs were a bit weaker ,but the crunch came after my third child was born,i had lost quite a bit of spinal fluid ,I had terrific headaches i had black bruising on the injections site and lost the ability to walk properly,that lasted about 1month but the headaches went for a while i hated daylight.and iam left with numbness in my left Leg and foot, my right one isn't affected. take care. Carolyn --- zenamarie123@... wrote: <HR> <html><body> <tt> Hi Carilyn, nice to meet you. I am 40 and a mother of 2.<BR> I have a question for you.... You said you lost feeling in your left <BR> leg after having your last child. I take it that you had a spinal <BR> while giving birth? (yes, no?)<BR> The reason I ask is because I have a 2nd cousin that was paralized <BR> from the waist down after having a spinal when delivering her <BR> daughter. She was only paralized for about 6 months but then got her <BR> feeling back, thank the lord. Her Dr. told her it was because of the <BR> CMT & nbsp; with the spinal...<BR> Knowing this I did not have a spinal with either of my kids. The 1st <BR> baby I didn't have any medication (but I sure did want it), the 2nd <BR> baby I had medication....<BR> Regi & nbsp; <BR> <BR> ***************<BR> ***************<BR> <BR> & gt; -----Original Message-----<BR> & gt; From: scotcmjml@y...<BR> & gt; scotcmjml@y...<BR> & gt; @y...<BR> & gt; @y...<BR> & gt; Date: Tuesday, February 13, 2001 1:35 AM<BR> & gt; Subject: [] just diagnosed<BR> & gt; <BR> Hello Carolyn, welcome this is a great place for information. Ask <BR> questions, read the archives we have. I have type 2 CMT. My 10 year <BR> old son has it. I have 3 children, 49 married. I'm getting to see <BR> some of the outback area of Australia by watching that dumb show<BR> Survivors! LOL. Check out the links page at , lots of good links <BR> for information there to.<BR> How many children do you have? You mention the CMT has gotton worse <BR> with each child, Becky M.<BR> ************************<BR> *************************<BR> just been told that my son who is thirteen has type 2 and that he got <BR> it from me his mother i have had all sorts of test and i have sought<BR> an answer since i was thirteen why one day i could walk up stairs one <BR> day then couldn't the next it seemed to get worse after each child <BR> now i have lost feeling in my left foot i fall over alot the tremors <BR> zap my body of all its strength i would like as much information from <BR> all sources as in Australia there isnt that much awareness any help <BR> would be great thanking you Carolyn[iAM 33YRS OLD].<BR> <BR> </tt> <br> <!-- |**|begin egp html banner|**| --> <table border=0 cellspacing=0 cellpadding=2> <tr bgcolor=#FFFFCC> <td align=center><font size= " -1 " color=#003399><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 HI I would really like to know what special things do i need to do for my son.he has a drop foot, wasting leg muscles,club foot,very stiff legs in the morning. Does anyone have a child with these symptoms and if so what activities are good for them eg;swimming wieght training so on Carolyn, --- KathleenLS@... wrote: <HR> <html><body> <tt> Carolyn, perhaps asking specific questions of the group would help us know <BR> what you're looking for. We have a variety of symptoms and backgrounds.<BR> I know of CMTers in the Sydney, Adelaide and Perth areas, by the way.<BR> Kat<BR> Seattle USA<BR> </tt> <br> <!-- |**|begin egp html banner|**| --> <table border=0 cellspacing=0 cellpadding=2> <tr bgcolor=#FFFFCC> <td align=center><font size= " -1 " color=#003399><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 hi Carolyn, So sorry to hear about your son. It's hard not know what to do to help them. I have a daughter with CMT and I also have a son with spinal muscular atrophy. I know the SMA is not the same as CMT but some of the " wasting problems " are the same. My daughter doesn't have wasting but my son does as well as c/o cramps. (neither have drop foot) for drop foot they sometimes use a brace. My son c/o leg cramps very often. I used to massage them most every night. Needed to do this especially if he didn't do his stretching exercises. Now he uses a hot tub most every night and that seems to help. A hot bath would probably do the same. Advil or anything like that never seemed to do much for him. The stretching has always been pretty important. If your child is school age, see about getting him into an IEP program at school. They offer physical therapy during school hours. That works out really well because if they need physical therapy, the school must provide it. I would imagine it is the same for all States. My son get PT 2 times a week and is in an adaptive education gym class. This way he does get his stretching as well as other physical therapy and in his gym class, it is just him and the teacher and they do whatever wants to and is able to without causing him problems. This works out really well. Hope some of this helps. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 Hi I am new to . The first symptoms of my CMT 1A started at age 6. I am now 58. Please for your son's own good get him to a GOOD orthopedist knowledgeable about CMT. They not only can advise surgery but they can direct you to a physical / occupational theripist. The orthopedists I have been to take the conservitave approch first. Owen Mark Scotney wrote: > HI > I would really like to know what special things do i > need to do for my son.he has a drop foot, wasting leg > muscles,club foot,very stiff legs in the morning. > Does anyone have a child with these symptoms and if so > what activities are good for them eg;swimming wieght > training so on > Carolyn, > > > --- KathleenLS@... wrote: > <HR> > <html><body> > <tt> > Carolyn, perhaps asking specific questions of the > group would help us know <BR> > what you're looking for. We have a variety of symptoms > and backgrounds.<BR> > I know of CMTers in the Sydney, Adelaide and Perth > areas, by the way.<BR> > Kat<BR> > Seattle USA<BR> > </tt> > > <br> > > <!-- |**|begin egp html banner|**| --> > > <table border=0 cellspacing=0 cellpadding=2> > <tr bgcolor=#FFFFCC> > <td align=center><font size= " -1 " > color=#003399><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Owen they want my son to wear a ankle support for 4 months then will maybe do tendon transfer? myself i am still waiting for the verdict of what type i have original diagnonis was axonal nuerophy[excuse spelling ]i just know i can't walk up stairs i have many scars on my knees and tremors that could get me a job as a milkshake machine. Carolyn --- Owen <ofriewer@...> wrote: <HR> <html><body> <tt> Hi<BR> <BR> I am new to . The first symptoms of my CMT 1A started at age 6. I am now 58. Please for your son's own good get him to a GOOD orthopedist knowledgeable & nbsp; about<BR> CMT. They not only can advise surgery but they can direct you to a physical / occupational theripist. The orthopedists I have been to take the conservitave approch<BR> first.<BR> <BR> Owen<BR> <BR> Mark Scotney wrote:<BR> <BR> & gt; HI<BR> & gt; I would really like to know what special things do i<BR> & gt; need to do for my son.he has a drop foot, wasting leg<BR> & gt; muscles,club foot,very stiff legs in the morning.<BR> & gt; Does anyone have a child with these symptoms and if so<BR> & gt; what activities are good for them eg;swimming wieght<BR> & gt; training so on<BR> & gt; Carolyn,<BR> & gt;<BR> & gt;<BR> & gt; --- KathleenLS@... wrote:<BR> & gt; & lt;HR & gt;<BR> & gt; & lt;html & gt; & lt;body & gt;<BR> & gt; & lt;tt & gt;<BR> & gt; Carolyn, perhaps asking specific questions of the<BR> & gt; group would help us know & lt;BR & gt;<BR> & gt; what you're looking for. We have a variety of symptoms<BR> & gt; and backgrounds. & lt;BR & gt;<BR> & gt; I know of CMTers in the Sydney, Adelaide and Perth<BR> & gt; areas, by the way. & lt;BR & gt;<BR> & gt; Kat & lt;BR & gt;<BR> & gt; Seattle USA & lt;BR & gt;<BR> & gt; & lt;/tt & gt;<BR> & gt;<BR> & gt; & lt;br & gt;<BR> & gt;<BR> & gt; & lt;!-- |**|begin egp html banner|**| -- & gt;<BR> & gt;<BR> & gt; & lt;table border=0 cellspacing=0 cellpadding=2 & gt;<BR> & gt; & lt;tr bgcolor=#FFFFCC & gt;<BR> & gt; & lt;td align=center & gt; & lt;font size= & quot;-1 & quot;<BR> & gt; color=#003399 & gt; & lt;b & gt; Sponsor & lt;/b & gt; & lt;/font & gt; & lt;/td & gt;<BR> & gt; & lt;/tr & gt;<BR> & gt; & lt;tr bgcolor=#FFFFFF & gt;<BR> & gt; & lt;td width=470 & gt; & lt;form method= & quot;get & quot;<BR> & gt; action= & quot;<a href= " http://rd./M=176325.1312152.2904070.1252795/D=egroupmail/S=170001\ 3481:N/A=590657/R=0/*http://whois.domains./domains_wresults.html " >http:\ //rd./M=176325.1312152.2904070.1252795/D=egroupmail/S=1700013481:N/A=59\ 0657/R=0/*http://whois.domains./domains_wresults.html</a> & quot; & gt; & lt;\ input<BR> & gt; type= & quot;hidden & quot; name= & quot;action & quot; value= & quot;1 & quot; & gt; & lt;input<BR> & gt; type= & quot;hidden & quot; name= & quot;property & quot; value= & quot;domains & quot; & gt; & lt;table<BR> & gt; cellpadding= & quot;0 & quot; cellspacing= & quot;0 & quot; border= & quot;0 & quot; width= & quot;468 & quot;<BR> & gt; height= & quot;60 & quot; bgcolor= & quot;#000000 & quot; & gt; & lt;tr & gt; & lt;td rowspan= & quot;2 & quot;<BR> & gt; width= & quot;150 & quot; & gt; & lt;a<BR> & gt; href= & quot;<a href= " http://rd./M=176325.1312152.2904070.1252795/D=egroupmail/S=170001\ 3481:N/A=590657/R=1/*http://domains./ " >http://rd./M=176325.131\ 2152.2904070.1252795/D=egroupmail/S=1700013481:N/A=590657/R=1/*http://domains.ya\ hoo.com/</a> & quot; & gt; & lt;img<BR> & gt; src= & quot;<a href= " http://us.a1.yimg.com/us.yimg.com/a/ya/_domain/batch2/biz-1left.gif " >\ http://us.a1.yimg.com/us.yimg.com/a/ya/_domain/batch2/biz-1left.gif</a> & quo\ t;<BR> & gt; height=60 width=150 border=0 alt= & quot; & quot; & gt; & lt;/a & gt; & lt;/td & gt; & lt;td<BR> & gt; width= & quot;318 & quot; & gt; & lt;a<BR> & gt; href= & quot;<a href= " http://rd./M=176325.1312152.2904070.1252795/D=egroupmail/S=170001\ 3481:N/A=590657/R=2/*http://domains./ " >http://rd./M=176325.131\ 2152.2904070.1252795/D=egroupmail/S=1700013481:N/A=590657/R=2/*http://domains.ya\ hoo.com/</a> & quot; & gt; & lt;img<BR> & gt; src= & quot;<a href= " http://us.a1.yimg.com/us.yimg.com/a/ya/_domain/batch2/biz-1top.gif " >h\ ttp://us.a1.yimg.com/us.yimg.com/a/ya/_domain/batch2/biz-1top.gif</a> & quot;\ <BR> & gt; width=318 height=30 border=0<BR> & gt; alt= & quot; & quot; & gt; & lt;/a & gt; & lt;/td & gt; & lt;/tr & gt; & lt;tr & gt; & lt;td align= & quot;center & quot; & gt; & lt;input<BR> & gt; type= & quot;text & quot; name= & quot;name & quot; size= & quot;17 & quot; maxlength= & quot;22 & quot;<BR> & gt; VALUE= & quot; & quot; & gt; & amp;nbsp; & lt;font color= & quot;#ffffff & quot; face= & quot;verdana,<BR> & gt; arial, helvetica, sans-serif & quot;<BR> & gt; size= & quot;3 & quot; & gt; & lt;b & gt;.com & lt;/b & gt; & lt;/font & gt; & amp;nbsp; & lt;input type= & quot;submit & quot;<BR> & gt; name= & quot;Submit & quot;<BR> & gt; value= & quot;GO! & quot; & gt; & lt;/td & gt; & lt;/tr & gt; & lt;/table & gt; & lt;/form & gt; & lt;/t\ d & gt;<BR> & gt; & lt;/tr & gt;<BR> & gt; & lt;tr & gt; & lt;td & gt; & lt;img alt= & quot; & quot; width=1 height=1<BR> & gt; src= & quot;<a href= " http://us.adserver./l?M=176325.1312152.2904070.1252795/D=egroupma\ il/S=1700013481:N/A=590657/rand=204075893 " >http://us.adserver./l?M=1763\ 25.1312152.2904070.1252795/D=egroupmail/S=1700013481:N/A=590657/rand=204075893</\ a> & quot; & gt; & lt;/td & gt; & lt;/tr & gt;<BR> & gt; & lt;/table & gt;<BR> & gt;<BR> & gt; & lt;!-- |**|end egp html banner|**| -- & gt;<BR> & gt;<BR> & gt; & lt;br & gt;<BR> & gt; & lt;tt & gt;<BR> & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Liz the physio department said they can't do anything for my son ,so i thought swimming might be a starting point. They haven't given him much support at all,exact words told to me by DR " he has cmt type 2 probably got it from you ' Carolyn --- gdamds@... wrote: <HR> <html><body> <tt> hi Carolyn,<BR> So sorry to hear about your son. It's hard not know what to do to help them. & nbsp; <BR> I have a daughter with CMT and I also have a son with spinal muscular <BR> atrophy. & nbsp; I know the SMA is not the same as CMT but some of the & quot;wasting <BR> problems & quot; are the same. & nbsp; My daughter doesn't have wasting but my son does as <BR> well as c/o cramps. (neither have drop foot) & nbsp; for drop foot they sometimes <BR> use a brace.<BR> <BR> My son c/o leg cramps very often. I used to massage them most every night. <BR> Needed to do this especially if he didn't do his stretching exercises. & nbsp; Now <BR> he uses a hot tub most every night and that seems to help. & nbsp; A hot bath would <BR> probably do the same. & nbsp; Advil or anything like that never seemed to do much <BR> for him. & nbsp; The stretching has always been pretty important.<BR> <BR> If your child is school age, see about getting him into an IEP program at <BR> school. & nbsp; They offer physical therapy during school hours. & nbsp; That works out <BR> really well because if they need physical therapy, the school must provide <BR> it. & nbsp; I would imagine it is the same for all States. & nbsp; My son get PT 2 times a <BR> week and is in an adaptive education gym class. & nbsp; This way he does get his <BR> stretching as well as other physical therapy and in his gym class, it is just <BR> him and the teacher and they do whatever wants to and is able to <BR> without causing him problems. & nbsp; This works out really well.<BR> <BR> Hope some of this helps.<BR> Liz<BR> <BR> <BR> [Non-text portions of this message have been removed]<BR> <BR> </tt> <br> <!-- |**|begin egp html banner|**| --> <table border=0 cellspacing=0 cellpadding=2> <tr bgcolor=#FFFFCC> <td align=center><font size= " -1 " color=#003399><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 -----Original Message----- From: Mark Scotney <scotcmjml@...> < > Date: Monday, February 19, 2001 1:17 AM Subject: Re: [] just diagnosed >Liz the physio department said they can't do anything >for my son ,so i thought swimming might be a starting >point. >They haven't given him much support at all, exact words >told to me by DR " he has cmt type 2 probably got it >from you ' >Carolyn >>>>>> >>>>>>>>>Great Dr! NOT! Some Dr's are insensitive clods! GRRRRRR, Dr's are not my best subject, I get irrate at the dumb, ignorent, insensitive ones. Swimming would be great for your son. And fun too, that always helps, LOL, ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 In a message dated 2/19/01 2:23:16 AM Eastern Standard Time, scotcmjml@... writes: << Liz the physio department said they can't do anything for my son ,so i thought swimming might be a starting point. >> Hello the House, I would suggest that swimming probable is the best exercise for any one with aching,artheritic, cmt, or any other kind of problematic joints. E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Carolyn It sounds like a good approach. I am in the process of possible having tendon transfers done on / in my hands. The hand surgeon I am going to was referred to me by another hand surgeon. Sorry I'm rambling. Anyway before doing the surgery he is sending me to a Occupational Therapist to have splints made to mimic what the surgery will do to see if will help. It sounds like that is the approach your sons doctor is taking. Happy Trails Owen Mark Scotney wrote: > Owen they want my son to wear a ankle support for 4 > months then will maybe do tendon transfer? myself i am > still waiting for the verdict of what type i have > original diagnonis was axonal nuerophy[excuse spelling > ]i just know i can't walk up stairs i have many scars > on my knees and tremors that could get me a job as a > milkshake machine. > Carolyn > --- Owen <ofriewer@...> wrote: > <HR> > <html><body> > <tt> > Hi<BR> > <BR> > I am new to . The first symptoms of my CMT 1A > started at age 6. I am now 58. Please for your son's > own good get him to a GOOD orthopedist > knowledgeable & nbsp; about<BR> > CMT. They not only can advise surgery but they can > direct you to a physical / occupational theripist. The > orthopedists I have been to take the conservitave > approch<BR> > first.<BR> > <BR> > Owen<BR> > <BR> > Mark Scotney wrote:<BR> > <BR> > & gt; HI<BR> > & gt; I would really like to know what special things > do i<BR> > & gt; need to do for my son.he has a drop foot, wasting > leg<BR> > & gt; muscles,club foot,very stiff legs in the > morning.<BR> > & gt; Does anyone have a child with these symptoms and > if so<BR> > & gt; what activities are good for them eg;swimming > wieght<BR> > & gt; training so on<BR> > & gt; Carolyn,<BR> > & gt;<BR> > & gt;<BR> > & gt; --- KathleenLS@... wrote:<BR> > & gt; & lt;HR & gt;<BR> > & gt; & lt;html & gt; & lt;body & gt;<BR> > & gt; & lt;tt & gt;<BR> > & gt; Carolyn, perhaps asking specific questions of > the<BR> > & gt; group would help us know & lt;BR & gt;<BR> > & gt; what you're looking for. We have a variety of > symptoms<BR> > & gt; and backgrounds. & lt;BR & gt;<BR> > & gt; I know of CMTers in the Sydney, Adelaide and > Perth<BR> > & gt; areas, by the way. & lt;BR & gt;<BR> > & gt; Kat & lt;BR & gt;<BR> > & gt; Seattle USA & lt;BR & gt;<BR> > & gt; & lt;/tt & gt;<BR> > & gt;<BR> > & gt; & lt;br & gt;<BR> > & gt;<BR> > & gt; & lt;!-- |**|begin egp html banner|**| -- & gt;<BR> > & gt;<BR> > & gt; & lt;table border=0 cellspacing=0 > cellpadding=2 & gt;<BR> > & gt; & lt;tr bgcolor=#FFFFCC & gt;<BR> > & gt; & lt;td align=center & gt; & lt;font > size= & quot;-1 & quot;<BR> > & gt; color=#003399 & gt; & lt;b & gt; > Sponsor & lt;/b & gt; & lt;/font & gt; & lt;/td & gt;<BR> > & gt; & lt;/tr & gt;<BR> > & gt; & lt;tr bgcolor=#FFFFFF & gt;<BR> > & gt; & lt;td width=470 & gt; & lt;form > method= & quot;get & quot;<BR> > & gt; action= & quot;<a > href= " http://rd./M=176325.1312152.2904070.1252795/D=egroupmail/S=170001\ 3481:N/A=590657/R=0/*http://whois.domains./domains_wresults.html " >http:\ //rd./M=176325.1312152.2904070.1252795/D=egroupmail/S=1700013481:N/A=59\ 0657/R=0/*http://whois.domains./domains_wresults.html</a> & quot; & gt; & lt;\ input & gt; > type= & quot;hidden & quot; name= & quot;action & quot; > value= & quot;1 & quot; & gt; & lt;input<BR> > & gt; type= & quot;hidden & quot; name= & quot;property & quot; > value= & quot;domains & quot; & gt; & lt;table<BR> > & gt; cellpadding= & quot;0 & quot; > cellspacing= & quot;0 & quot; border= & quot;0 & quot; > width= & quot;468 & quot;<BR> > & gt; height= & quot;60 & quot; > bgcolor= & quot;#000000 & quot; & gt; & lt;tr & gt; & lt;td > rowspan= & quot;2 & quot;<BR> > & gt; width= & quot;150 & quot; & gt; & lt;a<BR> > & gt; href= & quot;<a > href= " http://rd./M=176325.1312152.2904070.1252795/D=egroupmail/S=170001\ 3481:N/A=590657/R=1/*http://domains./ " >http://rd./M=176325.131\ 2152.2904070.1252795/D=egroupmail/S=1700013481:N/A=590657/R=1/*http://domains.ya\ hoo.com/</a> & quot; & gt; & lt;img<BR> > & gt; src= & quot;<a > href= " http://us.a1.yimg.com/us.yimg.com/a/ya/_domain/batch2/biz-1left.gif " >\ http://us.a1.yimg.com/us.yimg.com/a/ya/_domain/batch2/biz-1left.gif</a> & quo\ t;<BR> > & gt; height=60 width=150 border=0 > alt= & quot; & quot; & gt; & lt;/a & gt; & lt;/td & gt; & lt;td<BR> > & gt; width= & quot;318 & quot; & gt; & lt;a<BR> > & gt; href= & quot;<a > href= " http://rd./M=176325.1312152.2904070.1252795/D=egroupmail/S=170001\ 3481:N/A=590657/R=2/*http://domains./ " >http://rd./M=176325.131\ 2152.2904070.1252795/D=egroupmail/S=1700013481:N/A=590657/R=2/*http://domains.ya\ hoo.com/</a> & quot; & gt; & lt;img<BR> > & gt; src= & quot;<a > href= " http://us.a1.yimg.com/us.yimg.com/a/ya/_domain/batch2/biz-1top.gif " >h\ ttp://us.a1.yimg.com/us.yimg.com/a/ya/_domain/batch2/biz-1top.gif</a> & quot;\ <BR> > & gt; width=318 height=30 border=0<BR> > & gt; > alt= & quot; & quot; & gt; & lt;/a & gt; & lt;/td & gt; & lt;/tr & gt; & lt;tr & gt; & lt;td > align= & quot;center & quot; & gt; & lt;input<BR> > & gt; type= & quot;text & quot; name= & quot;name & quot; > size= & quot;17 & quot; maxlength= & quot;22 & quot;<BR> > & gt; VALUE= & quot; & quot; & gt; & amp;nbsp; & lt;font > color= & quot;#ffffff & quot; face= & quot;verdana,<BR> > & gt; arial, helvetica, sans-serif & quot;<BR> > & gt; > size= & quot;3 & quot; & gt; & lt;b & gt;.com & lt;/b & gt; & lt;/font & gt; & amp;nbsp; & lt;input > type= & quot;submit & quot;<BR> > & gt; name= & quot;Submit & quot;<BR> > & gt; > value= & quot;GO! & quot; & gt; & lt;/td & gt; & lt;/tr & gt; & lt;/table & gt; & lt;/form & gt; & lt;/t\ d & gt;<BR> > & gt; & lt;/tr & gt;<BR> > & gt; & lt;tr & gt; & lt;td & gt; & lt;img alt= & quot; & quot; > width=1 height=1<BR> > & gt; src= & quot;<a > href= " http://us.adserver./l?M=176325.1312152.2904070.1252795/D=egroupma\ il/S=1700013481:N/A=590657/rand=204075893 " >http://us.adserver./l?M=1763\ 25.1312152.2904070.1252795/D=egroupmail/S=1700013481:N/A=590657/rand=204075893</\ a> & quot; & gt; & lt;/td & gt; & lt;/tr & gt;<BR> > & gt; & lt;/table & gt;<BR> > & gt;<BR> > & gt; & lt;!-- |**|end egp html banner|**| -- & gt;<BR> > & gt;<BR> > & gt; & lt;br & gt;<BR> > & gt; & lt;tt & gt;<BR> > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Renata, You have all the say in the world to choose what type of device you think is best for you. Your doctor will also have an opinion. If your not comforatble with it, speak your mind! As far as helmets and bands go, Helmets are usually enclosed and do not apply dynamic pressure, where band are normally open on the top and hold back the high spots to let the low spots fill in. With the helmet, you start out with the inside being symmetrical and the babies' head grows into it. Helmet and band styles vary by orthotist, but if you check out the files section and the pictures of our cuties, you can get an idea. Good Luck! Jill (Mom to Josh-DOC grad & Jarred, Accord,NY) --- archambeaufamily@... wrote: > Our son ph was diagnosed with moderate > plagiocephaly two weeks ago > He is 6 months old. He is going to see neurosurgon > in Childrens > hospital in Oakland on May 1. We would appreciate to > hear from anyone > who had experience at that hospital's plagiocephaly > department or any > Bay Area Helmet Company. I believe we'll go with a > helmet.How much > say do we have in choosing a Helmet Company? And > what is a difference > in helmet and band? And should we start the helmet > treatment before > authorization from Insurance? > Last week I didn't find much info on plagiocephaly, > but yesterday and > today ,after finding YOU --it helps a lot. > Thank you. Renata and Ken > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Renata and Ken, It sounds like you are on the right track in securing treatment for your son's plagiocephaly. You are getting the treatment at the optimal time for maximum improvement and that will help speed the progress. Helmets tend to be passive and bands tend to be dynamic. Bands apply pressure to certain areas allowing growth to happen in the flat areas. Helmets do not apply direct pressure initially - they allow the head to grow into the shape of the helmet. With your son being so young either one of these devices should work well for you. One thing we have all learned at some point is that you need to screen your orthotist carefully. A good orthotist can make any product work. A bad orthotist can cause failure with any of the products!!! Unfortunately I do not live in your area, but I'm sure someone else in the group will be able to help you. You may have very good luck with your insurance company, but there are LOTS of us in this group who have had nothing but trouble and headaches with our insurance companies. You might give it a little while, but I would not wait long before getting started. My daughter started and completed her therapy and we are still fighting our insurance company!!!! Welcome to the group - I'm glad you found us! I think you will find this group to be an outstanding source of support, answers and friendship!! Keep us posted! Marci (Mom to - helmet grad) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Hi Renata! My name is Jess. My son Bryce also saw the neurosurgeon (Dr. Sun) at Oakland's Childrens Hospital. He is a very nice guy. Where exactly do you live? There are two different places that he could send you to get the STARband. The STARband was our only choice. There are no DOC clinics out here. He only uses one orthotic clinic, but there are two locations (Concord and I think Berkeley). We go to the one in Concord. They are the BEST people. When we first started going they did not wait for insurance authorization, but I think they might now. Please email me and let me know how it goes or if you have any questions. Jess > Our son ph was diagnosed with moderate plagiocephaly two weeks ago > He is 6 months old. He is going to see neurosurgon in Childrens > hospital in Oakland on May 1. We would appreciate to hear from anyone > who had experience at that hospital's plagiocephaly department or any > Bay Area Helmet Company. I believe we'll go with a helmet.How much > say do we have in choosing a Helmet Company? And what is a difference > in helmet and band? And should we start the helmet treatment before > authorization from Insurance? > Last week I didn't find much info on plagiocephaly, but yesterday and > today ,after finding YOU --it helps a lot. > Thank you. Renata and Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Hi, Jess, Thank you so much for reply. We live in Vacaville. The clinic in Concord would be fine for us ,too, I guess. I'm glad to hear Dr. Sun is a nice guy. We'll see him tomorrow. Did Dr. Sun suggest helmet at all or did he just prescribe bend right away? Is it my imagination or did I read more good stories about Docbend then STARbend? But I understand you are happy with a STARband, right?? How old is your baby and when did treatment start? Well, since this is a time sensitive matter, I hope, ph will start treatment soon, without delays from Insurance. Thank you again. Renata Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Hi, Jess, Sorry for being short, but what exactly was your problem with STARband? Was the casting done poorly? Did Bryce adjust to it right away? Was any damage done at all? Talk to you soon. Thank you. ph is 6 months old. Renata Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 In a message dated 4/30/2001 1:39:33 AM Central Daylight Time, archambeaufamily@... writes: I believe we'll go with a helmet.How much say do we have in choosing a Helmet Company? And what is a difference in helmet and band? And should we start the helmet treatment before authorization from Insurance? Renata and ken-Good luck to you. Make sure that you do not waive all rights to your benefits if you go ahead with treatment without a determination from your insurance and just remember you are the consumer and the Mommy you always have a say in what type of treatment helmet therapy, etc., that you child gets so ask a lot of questions and follow your heart!! Good luck and I am so glad you found this group. You will have a great time here and a lot of comfort. Keep us posted and WELCOME!! Beck mother to banded 3/26/01 Memphis. TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Hi! My name is Yolanda and I am 30 years old. I have just been diagnosed with RA after about 6 months of seeing my family physican, an orthopedic specialist and countless sessions of physical therapy. It all started with pain and stiffness in my left knee. After taking x-rays and being referred to a specialist, they told me I had Patello Femoral Syndrome or runners knee. Off to physical therapy I went for 3 sessions per week. During the 2nd week of therapy the area directly behind both of my knees became inflamed along with the balls of my feet and about a month or so later, I started getting pain in my fingers and knuckles. After a return trip to my family doctor, the physicans assistant did some tests and took blood work to confirm her suspicion of RA. I just had my first visit with a Rhematologist and I don't know whether to celebrate or cry. After dealing with the pain, stiffness and exhaustion for months without any relief, I was beginning to think it was all in my head. I was so relieved that the Rhematologist knew exactly how I was feeling (He finished my sentences), but now I am frightened. So far I have been dealing with the aches and pains without complaining too much. It usually takes me about an hour to be able to walk correctly in the morning. The thing that frustrates me the most is the fact that I am physically exhausted. No matter how much sleep I get, I wake up feeling like I have been hit with a Mack truck. I have been hobbling into work later and later in the morning. Does anyone else have the fatigue like I do? My doctor started me on a regimen of Plaquenol and Vioxx, but I am only on my second week of meds. Thanks in advance for your response. Reading your posts have given me great comfort. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Welcome to the board and condolences on having the disease. With proper medication most people are able to function pretty well in spite of having RA. I was amused by your mentioning a Mack truck because another board I follow has been using that terminology to express how they feel. I hope the lawyers from Mack trucks don't take offense at using their product in a negative way (just kidding of course). Some general information on many RA medicines is in the following site: http://www.arthritisinsight.com/medical/meds/ . You are on Plaquenil (a DMARD) and Vioxx (an NSAID ). The Plaquenil is usually slow to take effect, usually weeks to months. Often Prednisone is used early in RA to get relief from the worst symptoms even though it does not slow or stop permanant joint damage. I was started on 40 mg Prednisone daily and took about a year to wean down to 20 mg. I would have been bed ridden if I hadn't had Prednisone. Finally a combination of Methotrexate (15 mg a week) and Remicade (6 mg/kg) has kicked in and I'm off Prednisone. You might call your rheumatologist and ask about Prednisone. It has some bad side effects but for most people they are much less than uncontrolled RA. RA is an autoimmune disease and so is Chronic Fatigue Syndrome (CFS). Anyone with one autoimmune disease is at increased risk for other similar diseases. My personal feeling is that fatigue does not come with all RA but something like CFS commonly accompanies RA. Some people with RA don't have the debilitating fatigue but for others that is their most troublesome symptom. I'm one of them without bad fatigue so I haven't studied CFS and don't know how it is treated. I hope I've addressed all of your questions but if not or if you have any others don't hesitate to come back. Good luck and God bless. ----- Original Message ----- From: Yolanda Piper Rheumatoid Arthritis Sent: Monday, June 30, 2003 7:46 PM Subject: Just Diagnosed Hi! My name is Yolanda and I am 30 years old. I have just been diagnosed with RA after about 6 months of seeing my family physican, an orthopedic specialist and countless sessions of physical therapy. It all started with pain and stiffness in my left knee. After taking x-rays and being referred to a specialist, they told me I had Patello Femoral Syndrome or runners knee. Off to physical therapy I went for 3 sessions per week. During the 2nd week of therapy the area directly behind both of my knees became inflamed along with the balls of my feet and about a month or so later, I started getting pain in my fingers and knuckles. After a return trip to my family doctor, the physicans assistant did some tests and took blood work to confirm her suspicion of RA. I just had my first visit with a Rhematologist and I don't know whether to celebrate or cry. After dealing with the pain, stiffness and exhaustion for months without any relief, I was beginning to think it was all in my head. I was so relieved that the Rhematologist knew exactly how I was feeling (He finished my sentences), but now I am frightened. So far I have been dealing with the aches and pains without complaining too much. It usually takes me about an hour to be able to walk correctly in the morning. The thing that frustrates me the most is the fact that I am physically exhausted. No matter how much sleep I get, I wake up feeling like I have been hit with a Mack truck. I have been hobbling into work later and later in the morning. Does anyone else have the fatigue like I do? My doctor started me on a regimen of Plaquenol and Vioxx, but I am only on my second week of meds. Thanks in advance for your response. Reading your posts have given me great comfort. Quote Link to comment Share on other sites More sharing options...
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