new members

[Guest guest]

Oh dear - wrong mailing list Please delete

Chris.

>Hiya

>

> Pejta and Jim Penhale have just joined. Hi guys 28 of us now.

>

>I asked Brigitte if she'd like to join but haven't heard back from her yet.

>She's working for a Roman Catholic priest helping to look after 28

schizophrenic

>people, so we can add that to the insurance salesman and the policeman (and

>me the intrepid pilot of course

>

>Rodney and Jim P. started here this week and we need to expand to a new room.

>

>

>Chris.

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Chris! Geoff Crenshaw here.

> Subject: New members

>

> Hiya

>

> Pejta and Jim Penhale have just joined. Hi guys 28 of us

now.

>

> I asked Brigitte if she'd like to join but haven't heard back from her

yet.

> She's working for a Roman Catholic priest helping to look after 28

schizophrenic

> people, so we can add that to the insurance salesman and the policeman

(and

> me the intrepid pilot of course

>

> Rodney and Jim P. started here this week and we need to expand to a

new room.

What's this about???

Regards, -----------------------

Geoff ** Usual Disclaimers **

-----------------------

How can you have hope?

Get under the blood of the Passover Lamb.

EXO 12:7-3 / MAR 14:24 / REV 12:11

http://www.healingyou.org nonprofit Herbals, Homeopathics & Supplements

http://www.800-800-cruise.com/index-aff.html Make money from travel!

http://www.800-800-cruise.com 100,000+ travel deals in real-time

[Guest guest]

Oh fiddle! I just read a couple msgs deeper and saw you'd posted to the

wrong list. Now I've gone and muddied it up some more.

Sorry, everybody!

Regards, -----------------------

Geoff ** Usual Disclaimers **

-----------------------

How can you have hope?

Get under the blood of the Passover Lamb.

EXO 12:7-3 / MAR 14:24 / REV 12:11

http://www.healingyou.org nonprofit Herbals, Homeopathics & Supplements

http://www.800-800-cruise.com/index-aff.html Make money from travel!

http://www.800-800-cruise.com 100,000+ travel deals in real-time

[Guest guest]

Welcome to all our newbies!

F

Re: ( ) New Member

> Hello....... I am a new member as well. My son is 4.5 years and has just

been diagnosed with mild Asperger's with features of Semantic-Pragmatic

Disorder. We're tired, but finally relieved to have gotten the diagnosis.

It's interesting....he was always a bit quirky as a little kid, loved doors,

the " concept " of open and close, loved steering wheels and steering himself

around, but I would say true " age-of-onset " was a bit after 3 when he began

talking to himself in silly voices (almost echoing stuff) one day. It drove

us crazy! CRAZY! He began (suddenly) to have a difficult time with yes/no

questions, and usually would echo the last word or few words of his speech

or of yours. Learned his letters somehow (but HOW??!!) by the age of 20

months, was memorizing books and reading them with the same inflection he

had heard them by 2.5, and memorizing Duvall's bedtime stories

(videos) at around the same age. NO fine or gross motor skills

issues......rode a bike early; boogie boards, catches a ball well, likes to

hit a wiffle ball, climb trees, etc.. No real sensory issues either,

although he did for a couple of months become repulsed if you were eating

and had food on your face.......would kind of scrunch up his face, sort of

gag, and say..... " Oh, Mommy.....you need a napkin. " Definitely has

semantic-pragmatic issues.......had to teach him how to ask and answer the

" why " question. The other day, we were in the car late at night......I

turned around to see if he was sleeping and he said, " Mommy, what are you

looking at me to see if I am? " My husband and I just laughed. Excited about

being a part of this group.Please respond......do any of you have a son like

mine? Does this sound familiar? D. O'Grady

>

> TheGirlsNY@... wrote:Hi everyone,

>

> I am a new member and just wanted to introduce myself.

>

> My name is Kim, I live in New York and my 10 year old son has just been

> diagnosed with Asperger's. I have done a lot of research and reading over

> the past week and joined this group to learn from all of you.

>

> Luckily we always knew " something " was wrong and have been trying to get

him

> into a private school to meet his needs. We should have the Board of

Ed.'s

> decision any time now.

>

> Thank you all in advance for your wisdom and advice.

>

>

>

[Guest guest]

Wow, there seems to be a bunch of new people lately. I hope this doesn't

mean there's an epidemic of new RA patients.

Anyway, hi to all the new members.

To , on the meds.

I'm new to RA myself, but lived with my Dad suffering for years. The best

they could offer him, was gold shots,. and that never seemed to do much

good. I saw his hands and feet twist, watched him unable to turn his head,

and pretty much be housebound for the last 10 years of his life. He was

complicated by emphysema, which may or may not have been made worse by the

RA, which can cause lung problems too.

I want to be able to live and do things as long as I can. It's a matter of

quality of life. I would make the best of it, no matter what my health

turns out like, but if there is something out there that has a chance of

making my life better, why not take it? Side effects always have to be

weighed, but I know for sure what the effects of RA are. If I have to try

different things before one works, OK, but it's worth trying.

I started on a mild one, minocyline, which didn't do a thing, except make me

loopy, so I moved up.

I have been on methyltrexate now since about April. I'm getting the shots,

so no stomach problems, and I'm on folate daily. So far no side effects, but

I really am feeling better. (Almost makes me feel sheepish to tell people

here that, since so many are so much worse off.) I too have thin hair, and

have worried about hair loss, but I'll keep taking the folate and do what I

can.

Methyltrexate is chemo drug and has side effects, but I think every drug out

there has potential side effects. (Note the commercials on TV) Whether or

not you get them depends on your individual system, and if you do have

problems, you can stop taking it (with your doctor's help of course)

The treatments may be scary, but the realities of RA are scarier.

Noreen

[Guest guest]

---

I also had mine out a couple of months ago, i was wondering how you

are coming along. Do you feel you have conquered the candida? I took

a round of the fungal defense and the primal but im not sure if that

is enough. I also have almost of all of my energy back which is

amazing and am completely rid of the brain fog. Have you done any

cleanses that you could recommend? Thanks

Aubrey

n , " ktitko " <ktitko@y...> wrote:

> I just wanted to say hello and welcome to all our new members. I

> haven't been on the boards much over the past month, but I will try

to

> be more active now. I had my explant with Dr. Feng 3 months ago,

after

> having my implants for 11 years. My recovery has been amazing, but I

> am still fighting many of the old symptoms, and probably will be for

a

> long time. I think the best feeling for me is that the chronic

fatigue

> is gone. I wake up in the morning and I am actually awake and perky!

I

> will be happy to try to help answer any questions you new members

> have. This is a wonderful group and the information I received here

> saved my life!

>

>

[Guest guest]

,

I am so glad to see you back!

Patty

> I just wanted to say hello and welcome to all our new members. I

> haven't been on the boards much over the past month, but I will try

to

> be more active now. I had my explant with Dr. Feng 3 months ago,

after

> having my implants for 11 years. My recovery has been amazing, but I

> am still fighting many of the old symptoms, and probably will be for

a

> long time. I think the best feeling for me is that the chronic

fatigue

> is gone. I wake up in the morning and I am actually awake and perky!

I

> will be happy to try to help answer any questions you new members

> have. This is a wonderful group and the information I received here

> saved my life!

>

>

[Guest guest]

So many new members - welcome everyone!

On reading all the new posts the first thing that comes to mind is for

you all to do some reading and research on the connection between

Hypothyroidism and adrenal fatigue - many people cannot tolerate thyroid

hormone because they have untreated adrenal exhaustion... the symptoms

are often similar to a panic attack, rapid heart beat, palpitations,

anxiety etc etc - I can recommend some sites to begin with:

the first one is Gails Thyroid tips - especially relevant to those of

you who are under 40 but excellent for the rest of us as well - its long

but stick with it as their is some very useful info in there. The

adrenal section is particularly helpful.

http://personal.atl.bellsouth.net/w/u/wurmstei/#ADREN

this next one is a link I found on the previous site;

http://personal.bellsouth.net/w/u/wurmstei/Peatfield_Suggest.htm

home test for adrenal fatigue:

http://forum.lowcarber.org/showthread.php?t=117152

on adrenal fatigue:

http://www.naturalways.com/adrenal.htm

and Dr 's site - I did this treatment - it was my first major

breakthrough in 6 years - I was at the point of utter despair.

http://www.wilsonssyndrome.com/

I hope you find these useful some of these sites have saved my

life.....

It is also really important to find good doctors - go to Shomom's

top doc page to find more holistic docs:

http://thyroid.about.com/cs/doctors/a/topdocs.htm

kind regards,

Kerry

Newly diagnosed

I was just recently diagnosed, although have had symptoms for 3-5

yrs. But MDs & HMO didn't feel TSH numbers were significant enough

to look at anything, & they attributed weight gain 70lbs to decreased

exercise. I had many other symptom (online quiz, I had 34 out of 40

symptoms), but I didn't know. So they were treated individually, or

just ignored. Having done some research prior to last MD appt, where

she put me on 25micrograms of Synthroid (is this an adequate/ normal

amt?). From my research I was reading that if you are over 40 you

should also be prescribed T3 in addition to T4. However she would

not do that, as it is insurance guidelines to ONLY prescribe the

Synthroid. She wouldn't even discuss the Armour Therapy as she

considered the hormone found in that to be unreliable as it is not

monitored like other medications are??? She is saying it will take 6-

8 weeks to feel the effects and then we can monitor the T4 AND T3

levels just by doing a TSH - is that right??

I took the synthroid right away on the first night, and then again

the next AM, and generally take it in the AM. Already on day #1, I

was not fatigued, to the point that my co-workers even noticed, and

the ringing in my ears was a little quieter, and I wan't freezing

like I usually am - is it normal to some changes so rapidly??

Any other insights, suggestions for those of you that have both

struggled with the condition & the medical system over the years,

also what is an effective weight loss program? I was half way to

qualifying for bariatric surgery before this was discovered the

hypothyroidism.

Thanks for all you feedback!

[Guest guest]

Hello, I wanted to thank you for those websites, the first one was

especially helpful. I just became a new member. I was diagnosed

with hypothyroidism in March. I had no detectable thyroid in my

body, my blood results picked up no thryoid although I must have had

some because I was not yet in a coma! I was originally put on

synthroid. I initially felt better, but never felt " normal. " My

doctor added T3. I am still not " normal " but not as bad as I was.

I gained 60 pounds in 4 months and have never been so heavy. Since

I have been on the medicine I have stopped gaining weight, but am

having extreme difficulty loosing weight. I am considering natural

replacement and that site was very helpful. Thanks again!

> So many new members - welcome everyone!

>

> On reading all the new posts the first thing that comes to mind is

for

> you all to do some reading and research on the connection between

> Hypothyroidism and adrenal fatigue - many people cannot tolerate

thyroid

> hormone because they have untreated adrenal exhaustion... the

symptoms

> are often similar to a panic attack, rapid heart beat,

palpitations,

> anxiety etc etc - I can recommend some sites to begin with:

>

> the first one is Gails Thyroid tips - especially relevant to

those of

> you who are under 40 but excellent for the rest of us as well -

its long

> but stick with it as their is some very useful info in there. The

> adrenal section is particularly helpful.

>

> http://personal.atl.bellsouth.net/w/u/wurmstei/#ADREN

>

> this next one is a link I found on the previous site;

>

> http://personal.bellsouth.net/w/u/wurmstei/Peatfield_Suggest.htm

>

> home test for adrenal fatigue:

> http://forum.lowcarber.org/showthread.php?t=117152

>

> on adrenal fatigue:

> http://www.naturalways.com/adrenal.htm

>

> and Dr 's site - I did this treatment - it was my first

major

> breakthrough in 6 years - I was at the point of utter despair.

> http://www.wilsonssyndrome.com/

>

> I hope you find these useful some of these sites have saved my

> life.....

> It is also really important to find good doctors - go to

Shomom's

> top doc page to find more holistic docs:

>

> http://thyroid.about.com/cs/doctors/a/topdocs.htm

>

>

> kind regards,

> Kerry

>

> Newly diagnosed

>

>

>

> I was just recently diagnosed, although have had symptoms for 3-5

> yrs. But MDs & HMO didn't feel TSH numbers were significant

enough

> to look at anything, & they attributed weight gain 70lbs to

decreased

> exercise. I had many other symptom (online quiz, I had 34 out of

40

> symptoms), but I didn't know. So they were treated individually,

or

> just ignored. Having done some research prior to last MD appt,

where

> she put me on 25micrograms of Synthroid (is this an adequate/

normal

> amt?). From my research I was reading that if you are over 40 you

> should also be prescribed T3 in addition to T4. However she would

> not do that, as it is insurance guidelines to ONLY prescribe the

> Synthroid. She wouldn't even discuss the Armour Therapy as she

> considered the hormone found in that to be unreliable as it is not

> monitored like other medications are??? She is saying it will

take 6-

> 8 weeks to feel the effects and then we can monitor the T4 AND T3

> levels just by doing a TSH - is that right??

> I took the synthroid right away on the first night, and then again

> the next AM, and generally take it in the AM. Already on day #1,

I

> was not fatigued, to the point that my co-workers even noticed,

and

> the ringing in my ears was a little quieter, and I wan't freezing

> like I usually am - is it normal to some changes so rapidly??

> Any other insights, suggestions for those of you that have both

> struggled with the condition & the medical system over the years,

> also what is an effective weight loss program? I was half way to

> qualifying for bariatric surgery before this was discovered the

> hypothyroidism.

> Thanks for all you feedback!

>

>

>

>

>

>

>

[Guest guest]

Glenda and Charlie,

Feel free to let us know what you're feeling! And ask any questions you

might have. There are folks here who have been going through these ups and

downs for years now and they have some great advice.

How long have you been in treatment? What made you decide to test your

child?

Let us know what we can do to help!

=)

Robynn

-owner

[ ] Re: Serum Donation Opportunity $$/Active Lyme

Thank you so much for this info. I too have a pos. igg and igm w/ babiosa.

Have been on meds per Dr. Crist. I am waiting any day now to get my 6yr olds

results. We paid cash to get his test sent there. I don't believe I could

handle a trip right now, I am stressed and down pysically I feel like I was

hit by a truck. Following antibiotics protical from Crist. My son has strep

for the second time since Thanksgiving and his mood swings our out of

control. I ache every day to see him suffer, not knowing what is really

wrong with him. I am so glad to find this forum. Thank You. I am from Mo.

Can't wait to get to know U all. Support and knowalge is a must. Glenda and

Charlie

[Guest guest]

Welcome to all of you who are new. A couple of guidelines for participating

in the group:

1. Please delete prior messages from this board before hitting " send " or

set you e-mail so the message is not included. Failure to do that creates

pages and pages of old e-mails for some of us to scroll through. (Some of

us get the Daily Digest, rather than individual e-mails.)

2. If it's a non-LDN question, please write " off-topic " in the subject line

to make it easier for people to skip if they so choose.

Thank you.

[Guest guest]

Good luck on your journey. My son got his DOC band 3 weeks ago when

he was 6 months old. I also had my husband go to the casting. I am

soooo glad I did. I'm not sure I would have been able to hold him

still enough. It's not all that bad. It's over quickly.

cindy

>

> Hi,

>

> We are new to this group. My name is and my husband is

.

> Our son zander(Zander) is 6 1/2 months old. He has had his

first

> consult appt for measurements. We are waiting for the approval

from

> insurance. They said it could take about 3 weeks. This makes week

2.

> Zander will be getting a DOC band and we were told he will have to

wear

> this for about 9-12 weeks.

>

> I'm very nervous about him having the casting done. I know it

doesn't

> hurt them. But it just looks so scary for him. My husband will be

> going with me for the fitting. I just don't think I could hold him

> still.

>

> I'm sure I will have more questions as things progress with this

whole

> thing. I'm glad we found this group.

>

> , and Zander.

>

[Guest guest]

Good luck on your journey. My son got his DOC band 3 weeks ago when

he was 6 months old. I also had my husband go to the casting. I am

soooo glad I did. I'm not sure I would have been able to hold him

still enough. It's not all that bad. It's over quickly.

cindy

>

> Hi,

>

> We are new to this group. My name is and my husband is

.

> Our son zander(Zander) is 6 1/2 months old. He has had his

first

> consult appt for measurements. We are waiting for the approval

from

> insurance. They said it could take about 3 weeks. This makes week

2.

> Zander will be getting a DOC band and we were told he will have to

wear

> this for about 9-12 weeks.

>

> I'm very nervous about him having the casting done. I know it

doesn't

> hurt them. But it just looks so scary for him. My husband will be

> going with me for the fitting. I just don't think I could hold him

> still.

>

> I'm sure I will have more questions as things progress with this

whole

> thing. I'm glad we found this group.

>

> , and Zander.

>

[Guest guest]

Welcome to the group !

It's a good idea to take your hubby to the casting. I had him when ds

was casted but not dd. I did fine w/o him, but it's always nice to

have an extra set of hands!

Let us know how it goes!

Mom to Dane (4 yo) and Cece (13 mo) DOC Grads

[Guest guest]

Welcome to the group !

It's a good idea to take your hubby to the casting. I had him when ds

was casted but not dd. I did fine w/o him, but it's always nice to

have an extra set of hands!

Let us know how it goes!

Mom to Dane (4 yo) and Cece (13 mo) DOC Grads

[Guest guest]

Hi,

Welcome to the group! I see has everything coverd, I just

wanted to say welcome. Don't worry too much about the casting, it's

over pretty quickly. Let us know how it goes.

>

> Hi,

>

> We are new to this group. My name is and my husband is .

> Our son zander(Zander) is 6 1/2 months old. He has had his first

> consult appt for measurements. We are waiting for the approval from

> insurance. They said it could take about 3 weeks. This makes week 2.

> Zander will be getting a DOC band and we were told he will have to wear

> this for about 9-12 weeks.

>

> I'm very nervous about him having the casting done. I know it doesn't

> hurt them. But it just looks so scary for him. My husband will be

> going with me for the fitting. I just don't think I could hold him

> still.

>

> I'm sure I will have more questions as things progress with this whole

> thing. I'm glad we found this group.

>

> , and Zander.

>

[Guest guest]

Hi,

Welcome to the group! I see has everything coverd, I just

wanted to say welcome. Don't worry too much about the casting, it's

over pretty quickly. Let us know how it goes.

>

> Hi,

>

> We are new to this group. My name is and my husband is .

> Our son zander(Zander) is 6 1/2 months old. He has had his first

> consult appt for measurements. We are waiting for the approval from

> insurance. They said it could take about 3 weeks. This makes week 2.

> Zander will be getting a DOC band and we were told he will have to wear

> this for about 9-12 weeks.

>

> I'm very nervous about him having the casting done. I know it doesn't

> hurt them. But it just looks so scary for him. My husband will be

> going with me for the fitting. I just don't think I could hold him

> still.

>

> I'm sure I will have more questions as things progress with this whole

> thing. I'm glad we found this group.

>

> , and Zander.

>

[Guest guest]

Hi !

Welcome to the group! Your fears are totally normal. The good

thing is that the casting only lasts about 10 minutes. Which

location are you going to for treatment?

Natasha

Atlanta

>

> Hi,

>

> We are new to this group. My name is and my husband is

.

> Our son zander(Zander) is 6 1/2 months old. He has had his

first

> consult appt for measurements. We are waiting for the approval

from

> insurance. They said it could take about 3 weeks. This makes

week 2.

> Zander will be getting a DOC band and we were told he will have to

wear

> this for about 9-12 weeks.

>

> I'm very nervous about him having the casting done. I know it

doesn't

> hurt them. But it just looks so scary for him. My husband will

be

> going with me for the fitting. I just don't think I could hold

him

> still.

>

> I'm sure I will have more questions as things progress with this

whole

> thing. I'm glad we found this group.

>

> , and Zander.

>

[Guest guest]

Hi !

Welcome to the group! Your fears are totally normal. The good

thing is that the casting only lasts about 10 minutes. Which

location are you going to for treatment?

Natasha

Atlanta

>

> Hi,

>

> We are new to this group. My name is and my husband is

.

> Our son zander(Zander) is 6 1/2 months old. He has had his

first

> consult appt for measurements. We are waiting for the approval

from

> insurance. They said it could take about 3 weeks. This makes

week 2.

> Zander will be getting a DOC band and we were told he will have to

wear

> this for about 9-12 weeks.

>

> I'm very nervous about him having the casting done. I know it

doesn't

> hurt them. But it just looks so scary for him. My husband will

be

> going with me for the fitting. I just don't think I could hold

him

> still.

>

> I'm sure I will have more questions as things progress with this

whole

> thing. I'm glad we found this group.

>

> , and Zander.

>

[Guest guest]

I'm a new member as of a few weeks ago. I was diagnosed at 13, had a double

tendon transfer and haven't had any treatment since. Now that I am in my late

20's I have started physical therapy.

I am so glad that I got connected to the group - it feels good knowing that

other people are going through the same challenges that I do!

[Guest guest]

Welcome .

Geri in Minnesota

[Guest guest]

Welcome .. Ann

Geri in Minnesota

I joined this group about two weeks ago and have just been checking out the

posts. It's great to hear many familiar themes and get some great info as well.

I'm Ann. I was diagnosed at 37,although this was basically just a

confirmation for me. I had been experiencing minor symptoms for a few years. My

brother was diagnosed at Mayo Clinic when he was 23 or 24. As part of testing

there, my dad was also diagnosed (he was around 55).

I had one child when I was 36 and experienced a rapid progression

post-pregnancy. However, after my second pregnancy at 41, I had to start with

shoe orthodics and then progressed to AFOs. The AFOs were very bothersome to me,

although they did help with stamina when walking. Two years ago (at 44), I had

surgery on my left foot to lower the arch and " straighten - relocate " the heel.

This has been a great success since the primary issue I have is suppenating

(sp?) or ankle-rolling on both feet. The left foot is now great! I have very

little " foot drop " . I am now considering the same surgery on my right foot

because of continued progression. In the past year, I also have started

experiencing cramping/weakness in hands and more neuropathic pain in my feet.

I DO wish I had more ability to keep up with my children and to play sports

with them, etc. Right now, they are 9 and 5. So far, neither display CMT

symptoms, but I have not had them formally tested. I do feel very blessed to be

able to continue working and right now, I'm just using shoe orthodics for the

left foot and an occasional AFO (for long days of walking or standing) for my

right foot.

I appreciate the opportunity to be part of the group and look forward to

future exchanges.

[Guest guest]

Sorry--as a new member I've been just kind of lurking here, just seeing

what this group was about. I guess it's now time to jump into the fray, as

it were.

My name is . I'll be 67 on Nov. 4. As a native Santa Barbaran, I see

no need for change, and have lived in the same ZIP-code area my entire

life, and have had the same phone number since 1968.

I was a reporter/editor/columnist for the Santa Barbara News-Press for

over 25 years.

About 8 or 9 years ago, I noticed that my fingers were getting numb after

I'd been typing for long stretches. The numbness would eventually go away.

And then one day it didn't.

I made an appointment with a neurologist, who did EMG studies of my hands.

He also wanted to do studies of my feet.

" Why? " I asked him. " I don't have any problems with my feet. "

Imagine my surprise to learn that I had virtually NO feeling or reflexes

at all in my feet! True, there had been that time a few years previously

when I'd been walking barefoot on my hardwood floor and heard a " click click "

sound, only to discover that I'd stepped on a thumbtack and not felt it,

but I never gave that a second thought.

One day in September 2007, something bad happened.

My left foot began to swell and change color. It was spectacular. I went

to my family practitioner, who referred me to a podiatrist. I was admitted

to a hospital that day. Turns out that I had somehow cut the bottom of my

foot and didn't know about it, since of course I couldn't feel anything,

and who ever looks at the bottom of their feet? Infection had set in with a

vengeance. I was in near septic shock.

Half of my left foot wound up being amputated. Yikes! This was my

" clutch foot " --would I ever be able to drive my classic stick-shift right-hand

drive 1967 Volkswagen--or my motorcycle--again?

While in the hospital, virtually all my lab values were through the

ceiling, including my blood sugar. I was erroneously diagnosed with diabetes

type II, even though my hemoglobin A1C both prior to and after the infection

was at or below 6. All the other blood panels have subsequently returned to

normal levels as well.

Meanwhile, my neurologist was testing me for everything from heavy metal

exposure to multiple sclerosis, all with negative results.

Allow me at this time to introduce my son, .

turned 37 on June 4 of this year. He's an M.D., and is a

psychiatrist. He's got credentials. Recognizing that he had some of my

symptoms

(neuropathy, absence of reflexes in the lower extremities), he went through

extensive testing, up to and including the chromosomal testing that costs

megabucks. The result?

has CMT!

Imagine that!

And since one inherits CMT from a parent--and since 's mom has no

symptoms and I have ALL of them--guess who he got it from?

Yay!

--who, unlike his CMT-free brother, Graham, the jock, wasn't all that

well-coordinated in athletics, etc., while growing up--said, " Now it makes

sense, " when he heard his diagnosis.

And I, who have always " walked funny " and have been terrible with the

hand-eye coordination involved with video games, now understand that foot-drop

and inherent clumsiness are just a part of CMT, which I have been dealing

with my entire life. (I'm sure that all you CMT-ers are aware that the

phrase " tripping over linoleum " is very real. I've been there, done that and

got the t-shirt).

Unfortunately, according to my neurologist, the chromosomal testing that

got isn't available to people over a certain age (I don't know exactly

which age it is). Well..you can GET the testing, but insurance won't

cover it and it costs thousands of $$$. The reason for this, I am told, is

because if you're UNDER a certain age, you can have children, so it's nice to

know if you're " defective, " but if you're OVER that age, you can't have

children anyway and you've already got CMT, so what's the point?

Can you spell " hideous? "

Thanks to an excellent prosthetist/orthotist ( Gest of Camarillo,

CA), I have a shoe and orthotic that lets me do whatever I want. I can drive

my stick-shift VW, ride my motorcycle, take my Alaskan malamute and

Siberian husky for walks, etc.

My nerurologist tells me I should use a cane, but I don't see the reason

for it, since the only time I have balance issues is when I encounter

stairs--but this is why God invented handrails.

I was issued a handicap placard by the DMV, but I only use it if my foot

is really hurting, which it does on rare occasions, if I've been on my feet

too long.

Considering how prevalent CMT is, I'm amazed that it's not more

well-publicized.

--

[Guest guest]

I joined this group about two weeks ago and have just been checking out the

posts. It's great to hear many familiar themes and get some great info as well.

I'm Ann. I was diagnosed at 37,although this was basically just a

confirmation for me. I had been experiencing minor symptoms for a few years.

My brother was diagnosed at Mayo Clinic when he was 23 or 24. As part of

testing there, my dad was also diagnosed (he was around 55).

I had one child when I was 36 and experienced a rapid progression

post-pregnancy. However, after my second pregnancy at 41, I had to start with

shoe orthodics and then progressed to AFOs. The AFOs were very bothersome to

me, although they did help with stamina when walking. Two years ago (at 44), I

had surgery on my left foot to lower the arch and " straighten - relocate " the

heel. This has been a great success since the primary issue I have is

suppenating (sp?) or ankle-rolling on both feet. The left foot is now great! I

have very little " foot drop " . I am now considering the same surgery on my right

foot because of continued progression. In the past year, I also have started

experiencing cramping/weakness in hands and more neuropathic pain in my feet.

I DO wish I had more ability to keep up with my children and to play sports with

them, etc. Right now, they are 9 and 5. So far, neither display CMT symptoms,

but I have not had them formally tested. I do feel very blessed to be able to

continue working and right now, I'm just using shoe orthodics for the left foot

and an occasional AFO (for long days of walking or standing) for my right foot.

I appreciate the opportunity to be part of the group and look forward to future

exchanges.

[Guest guest]

Hi Nic,

It's great to meet you. I just read a bit of your blog and enjoyed it very much.

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