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Hello ,

[i'm deleting parts of your text that I am not responding to]

> Her ped. is NOT supportive of alternative treatments, so

> I'm wondering what I do next. Do I need to find a new

> ped?

well, that would be nice. depends on what your options are.

it is a very personal choice, and what is workable for one

person is not for another. Chances are you would feel a

whole lot better with a " supportive " doc, but, then, you

have to see if you can FIND one who feels " supportive " .

> There are some DAN! drs. in our city -- would

> those be a good resource?

maybe, or probably. If you want you can read my comments

about seeking and evaluating doctors, here:

/files/HOW_TO_find_doctor

By the way, that is a really new file, and if you have any

comments on things I should add, please let me know.

> Do I need a dr. approval

> in order to do a hair analysis?

yes and no. Yes, the labs require one. No, you can order one

through a company that will actually provide one for you.

Read all the details, here:

/files/HOW_TO_hair_test

> Any info would be great, and I'm looking forward to

> what this list might bring to our family and to my

> daughter...

I'm looking forward to it to--- I hope it helps you/her.

best wishes,

Moria

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Guest guest

Hi -- I'm from the SID board too-- glad to see you are here.

In regards to ped not being supportive... stay on the board, read the

Files, and especially the Love Letters. Over time, I am learning

(sometimes slowly) to make decisions for my son based on what I think

is right, and sometimes that involves our ped and sometimes it does

not. Like this week, we have an appt to talk to our son's ped...

depending on what he says, I may go ahead and chelate without him

anyway! Because I feel it has to be done. I would like for him to

be on board, but I'm not weighing my decision on him.

Naturopath's may also be an option, but be careful about what

protocol they prescribe. I have a mom friend who is not on the

board, but I have given her a lot of the info from this board, and

she is still going to go with her naturopath's chelation protocol,

which is 6 days on 3 days off, just two doses of DMSA and ALA per

day. This flies in the face of everything I gave her! So if you

decide to work with someone, you may need to be firm about what

chelation protocol you are most comfortable with. Right now, I am

most comfortable with Andy's protocol because the rationale behind

it seems sound. I don't like my friend's protocol because I think

of all the metals dumping into his liver, and then waiting 10 more

hours for the next dose?? Doesn't sound like a good idea to me. So

anyway-- the Files should have a lot of the information for you.

Also, check out the photo's, too!

W

> Hi. I'm , mom to (5 yrs) who has had

> sensory integrations issues since birth. I also suspect

> we are dealing with some ADD-like issues, too.

>

> I'm very interested in the mercury link, as I think she's

> gotten worse since her 5 yr. vaccines last month. She's

> more sensory-defensive, her attention is much worse,

> she's spacey and is talking non-stop.

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  • 7 years later...
Guest guest

I am wondering if I have CMT (not diagnosed yet) and just have some questions. I

did read the Signs & Symptoms file, but I really don't have most of those

listed.

I was telling my naturopath about my symptoms the other day and the fact that

they are very similar to my mom's and she suggested CMT but that's as far as it

went. My right foot has occasional " numbness " (sort of -- hard to explain).

Mostly along the outer edge of my foot and into the small toes. This sometimes

extends into my calf but has never gone higher than my knee. This can also feel

like a burning or achiness in those same areas. At night, it gets worse if I'm

on my right side with my left leg on my right leg (the pressure of one leg on

the other makes it worse).

I am 41 and this just started about 6 months ago. My mom describes the same

thing with the same age onset but she just lives with it and has never wondered

the cause. She also has a hammer toe on the same foot.

Can anyone tell me how likely this is to be beginning CMT symptoms? I can't

decide what type of doctor to see about this -- naturopath, chiropractor,

regular MD . . . ?

Thanks.

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Guest guest

,

Welcome to our network. As for signs and symptoms I don't have them all, nor is

there any family history of CMT. It was through an orthopedist first that I was

diagnosed (childhood) and later confirmed through neurological examinations and

tests. Many neuromuscular disorders share similiar symptoms.

I would suggest you seek advice from a Neurologist.

Gretchen

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  • 1 year later...

Hi, PJ. Welcome!

The tingling/burning/numbness you are describing could be peripheral

neuropathy. Peripheral neuropathy does have a strong association with

RA.

Type 2 diabetes also has a strong association with peripheral neuropathy.

Another thing to be aware of is that leflunomide can cause peripheral

neuropathy.

Usually, RA does not affect the hand joints closest to the fingernails

to any great degree.

Not an MD

On Thu, Nov 11, 2010 at 1:11 PM, Patti Yuswak <WhtBC10@...> wrote:

> Hi Everyone,

>

>

>

> I'm so glad to have found a place for support, I'm so confused.  I am 53

> years old and was diagnosed with RA a few months ago.  My Dr sent me to a

> rheumatologist who started me on methotrexate but I had an allergic reaction

> to it so he now has me on leflunomide.

>

>

>

> Leflunomide isn't helping much so he wants me to start either Enbrel or

> Humira, I chose Enbrel which I will begin as soon as my insurance company

> gets the pre-approval stuff over with, might be a few weeks.  In the

> meantime I'm having a lot of pain in my hands and feet, not just in the

> joints.

>

>

>

> I was waking up with numb hands so my Dr thinks I have carpal tunnel and

> told me to wear wrist braces while I sleep which  has helped the numbness

> but they still tingle all the time (sometimes burn).  My feet have been

> hurting for well over a year now

>

>

>

> The hands - everything tingles, both whole hands.  My rheumatologist thinks

> I have carpal tunnel and told me to wear wrist braces when I sleep, which I

> do and while I still have tingling all the time (pretty sharp at times,

> almost burning) my hands are not numb when I wake up anymore.  And one odd

> thing, can RA affect the top joints in fingers?  I read somewhere that it

> didn't, but on my middle fingers, both hands, occasionally the top joint

> will be so painful I can't even touch it to anything, it's as if it's

> broken.  Then it'll go away and be fine, but just that knuckle.  The others

> hurt always, but not like when the middle one acts up.

>

>

>

> My feet - This has been going on for well over a year but has gotten a lot

> worse lately, I went to a foot Dr last fall and had other things fixed but

> she says the pain/numbness/tingling is not foot related.  Feels like I'm

> walking on bubble wrap all the time, or marbles (this is the worst feeling

> for me).  My toes tingle and go numb and it's spread to the top of my foot

> now, has always been that way on the bottom.  The Dr says it's not RA

> related but I don't know what else it could be.  I have pain when I bend my

> toes (which don't really bend very much anymore).

>

>

>

> Could the above be RA related or should I go back to my regular Dr for

> another diagnosis?  Has anyone had these symptoms and been helped by Enbrel,

> etc?  Any information any one can give me will be greatly appreciated, seems

> like so much is going on I just don't know where to go from here.  Sorry

> this is so long.

>

>

>

> Thank you,

>

> PJ

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Thank you ! Sounds like I need to tell my rheumatologist about the

hands and feet again and stress that they've gotten worse over the past

couple of weeks. I did not realize that leflunomide can cause peripheral

neuropathy, I'm wondering if they would take me off of it or if I need a

supplemental drug to go with the Enbrel.

I get tested for diabetes yearly when I see my endocrinologist (I have

Graves Disease) and my regular Dr has tested me a few times as well and

those tests have come back ok.

Thanks again!

PJ

From: [mailto: ] On

Behalf Of

Sent: Friday, November 12, 2010 7:07 AM

Subject: Re: [ ] Newbie with Questions

Hi, PJ. Welcome!

The tingling/burning/numbness you are describing could be peripheral

neuropathy. Peripheral neuropathy does have a strong association with

RA.

Type 2 diabetes also has a strong association with peripheral neuropathy.

Another thing to be aware of is that leflunomide can cause peripheral

neuropathy.

Usually, RA does not affect the hand joints closest to the fingernails

to any great degree.

Not an MD

,___

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