Re: Introduction...

[Guest guest]

Hi Lynn,

I am sorry to hear you have both RA and MS. especially at your young age. I'm Jan from Michigan, I'm 52 years old and I also have RA and MS. I was dxed with RA when I was 40 and MS last year. What do you take for your MS? I was taking Rebif but found that because it is an interferon it makes my RA worse. I am taking relafen, azulfadene, methotrexate, plaquenil, folic acid, and now because of the flare ups I've been having from the MS medication I'm on 10 mg. prednisone. I'm switching to copaxone in hopes that it will be better with my arthritis.

I also belong to a group for MS which is very helpful. FriendswithMS@... They are a great group of people that exchange information and support each other. I'd love to hear from you.

Jan in MI

-------Original Message-------

From: Rheumatoid Arthritis

Date: Friday, October 31, 2003 5:06:34 PM

Rheumatoid Arthritis

Subject: Introduction...

Hello!I've been lurking here for a little while and thought I should speak up and introduce myself.My name is Lynn. I'm 34 years old and have had JRA for quite some time. I was initally dx'd at age 12 and went into remission at about 18.I thought it was gone for good, but no such luck. At 25 I was dx'd with RA. Luckily (aside from some nasty flare ups requiring Prednisone) things haven't gotten too bad for me. While it effects just about every joint in my body - thankfully not my spine, it seems to be progressing very slowly and I haven't had to go on the heavy duty meds.At 30 I was dx'd with Multiple Sclerosis which is also ticking along fairly well with medications keeping things under control.I just recently saw a rheumatologist after a 6 year period (long story - horrible GP - got a new one now. :-) ). I'm back on medications (Plaquenil and Bextra) and feeling much better.My worst symptoms (aside from pain) are fatigue and sleep troubles. I take an herbal supplement for fatigue, but the sleep problems are harder to deal with - mostly it's due to pain in my elbows. Seems like any other joint (hips, knees, etc.) I can arrange to get some relief for a while so I can get to sleep. With my elbows nothing I do seems to make them feel better. It's frustrating! ;-)Anyways, that me in a nutshell!Best Wishes,Lynn

[Guest guest]

Hi Jan - thanks for your reply!

It's nice to know I'm not alone - although it does seem that many

folks with one autoimmune disorder often have others.

I've been taking Copaxone for two years now and I love it. I haven't

had an attack since starting it (which of course could just be

coincedence! ;-) ) and I find it very easy to tolerate.

There are no side effects with Copaxone, which is great. I DID

notice that when I first went on it my arthritis flared up for a few

weeks, but after that it settled right down again. There is some

kind of connection (probably because they are both autoimmune

disorders) as I've noticed if I STOP taking my Copaxone for more than

a day or two my RA goes into high gear! I've actually played the mad

scientist with it and deliberately stopped taking the Copaxone now

and then to see if it was coincedence or not, and it seems not.

Whether that means the Copaxone has some modifying effect on RA as

well I don't know - but it's certainly not making it worse!

And thank you for the invite to the MS group! I'll pop over there

too!

Best wishes to you,

Lynn

>

>

[Guest guest]

Hey Lynn. I am new to the group as well. Just diagnosed with RA and

have known that I have had it for a while. I also tested positive

for my ANA, and don't know much other than that. I go to the

specialist on the 21st, but was wondering if you could tell me some

of your beginning symptoms of MS. My grandmother had that and I need

to get as much info as I can other than websites. Any insight would

be appreciated.

> Hello!

>

> I've been lurking here for a little while and thought I should

speak

> up and introduce myself.

>

> My name is Lynn. I'm 34 years old and have had JRA for quite some

> time. I was initally dx'd at age 12 and went into remission at

about

> 18.

>

> I thought it was gone for good, but no such luck. At 25 I was dx'd

> with RA. Luckily (aside from some nasty flare ups requiring

> Prednisone) things haven't gotten too bad for me. While it effects

> just about every joint in my body - thankfully not my spine, it

seems

> to be progressing very slowly and I haven't had to go on the heavy

> duty meds.

>

> At 30 I was dx'd with Multiple Sclerosis which is also ticking

along

> fairly well with medications keeping things under control.

>

> I just recently saw a rheumatologist after a 6 year period (long

> story - horrible GP - got a new one now. :-) ). I'm back on

> medications (Plaquenil and Bextra) and feeling much better.

>

> My worst symptoms (aside from pain) are fatigue and sleep

troubles.

> I take an herbal supplement for fatigue, but the sleep problems are

> harder to deal with - mostly it's due to pain in my elbows. Seems

> like any other joint (hips, knees, etc.) I can arrange to get some

> relief for a while so I can get to sleep. With my elbows nothing I

do

> seems to make them feel better. It's frustrating! ;-)

>

> Anyways, that me in a nutshell!

>

>

> Best Wishes,

>

> Lynn

[Guest guest]

Hi Jen,

I would suggest checking out The National MS Society

(http://www.nationalmssociety.org) and/or the MS Society of Canada

(http://www.mssociety.ca). They have lots of good information about

MS - it's symptoms, treatments, etc.

For me, MS hit like a Mac Truck - within a week I went from a small

patch of numbness on my left shin and left foot to numbness right up

to my chest, vision loss (temporary), trouble walking, balance

troubles, and memory problems.

Happily, with treatment all the symptoms eventually went away, and

aside from one small attack two years ago I've been pretty much

symptom free.

MS affects people SO MANY different ways though, and the symptoms

range from very subtle to more severe. If you have ANY concerns,

talk it over with your GP. Your GP can send you to a neurologist who

can do a range of tests to discover if you have MS or not. An MRI is

a very common tool in testing for MS.

If you'd like to, feel free to email me and I'll be happy to give you

more information and answer any questions you have!

Best wishes,

Lynn (breath_balance@...)

[Guest guest]

Hi ! Welcome to the list and to Ohio! Correct me if I'm wrong, but I'm thinking you live near Summit Mall. I don't live that way, but I do work with a woman who lives in the Revere school district. She has a step son in the high school and it seems like a good school. My coworker has contacted the director of special ed because she thinks her son (going into K) might have a disability and the director was very helpful and nice. She can't say the same for the principal or school psychologist. She is still working with her ped to get a diagnosis, then she'll contact the school again. I don't know which elementary school she was working with.

My suggestion would be to schedule a visit for the school to which your son would be going after you move. Visit the classroom, talk to the principal and teacher and get a feel for how cooperative and open they are to accommodating your son. I do want to point out that if you choose not to enroll your son in the local school district, they are under no obligation to provide other services such as speech therapy or occupational therapy.

Hudson is quite a distance from Summit mall, but I hear they provide good services for children on the spectrum. My boss's boss's wife teaches a classroom for children with disabilities in that district. If you are looking for full or partial inclusion for your son, I don't know how accommodating they are, though. If Hudson isn't too far away, you may want to look there. On the other hand, I have heard that some parents (of typical students) were not happy with Hudson, so they recently started their own Catholic school without help from their parish, Seton Academy. Why they were unhappy, I don't know.

My coworker really likes her son's ped; I'll ask her his name today. I don't know how he feels about vaccines, but I certainly understand how you feel. I too have 3 children. The oldest, on the spectrum, has most of his shots; the younger son, NT, has most of his baby shots, but not his K boosters (he's still in preschool), and my youngest has only a few shots.

Off White Pond Rd. is Dr. Waickman's office. He is an allergist, not a ped or family medicine doctor. But last summer, he helped us with an elimination diet with our son. Bobby had been GF-CF, but now we know he can't have corn products, carrageenan, or sodium methyl cellulose. Dr. Waickman also seems quite knowledgeable regarding other interventions. He has helped our family a lot.

I certainly hope you find the right doctor and school for your family! Please let me know how your search goes.

Marotta

----- Original Message -----

From: LJL

Sent: Tuesday, May 25, 2004 1:24 AM

Subject: [ ] Introduction...

Hi, my name is , and I am the mother of three kids. My oldest, 6, has High Functioning Autism. We are moving to an apartment until our home in Illinois sells. This apartment is located at I-77 and Route 18. We do the 'diet thing', and I homeschool. I did use the public school system for two years of preschool, and I tried to use it for Kindergarten, but I gave up. I am also homeschooling my typical 4 year old son with the same curriculum. I might contact whatever school system we move to in order to get language therapy again. Unless that school has a super system for handling autistic kids, I'll continue to homeschool him (them) though.Does anybody recommend or not recommend school districts/schools?I am also looking for a physician who will allow us to continue our exemptions to vaccines (oldest was fully vaccinated and yougest is unvaccinated, middle son is partially/selectively vaccinated). Thanks for any help in that regard.

[Guest guest]

Hi ,

My name is n. I have a 5 year old son that is high functioning. I live in Garfield Heights, OH. I'm off of I-77 also. You live close to Medina? We also do the dietary interventions but not homeschooling. I have a link for a homeschooling support group when you need it. It's also on the Ohio Website Links page near the bottom.

We have DAN practitionor who supports the biomedical interventions and also our vaccine beliefs. He works in Westlake.

We will be getting together for a Mom's night out next month in June. I'll be planning next week for it.

Anyway, welcome to our group!

Keep in touch,

n

laura6307@... writes:

Hi, my name is , and I am the mother of three kids. My oldest, 6, has High Functioning Autism.

We are moving to an apartment until our home in Illinois sells. This apartment is located at I-77 and Route 18.

We do the 'diet thing', and I homeschool. I did use the public school system for two years of preschool, and I tried to use it for Kindergarten, but I gave up. I am also homeschooling my typical 4 year old son with the same curriculum.

I might contact whatever school system we move to in order to get language therapy again. Unless that school has a super system for handling autistic kids, I'll continue to homeschool him (them) though.

Does anybody recommend or not recommend school districts/schools?

I am also looking for a physician who will allow us to continue our exemptions to vaccines (oldest was fully vaccinated and yougest is unvaccinated, middle son is partially/selectively vaccinated).

Thanks for any help in that regard.

[Guest guest]

Hi ,

My son Davey is also on the SCD diet. six months now. My son has digestive problems too. He's also been gfcf for over 2 years. I think the SCD has helped him with digestion but he still has some issues. We're getting more tests done.

~ n

laura6307@... writes:

The boys are on a diet called Specific Carbohydrate Diet (since beginning of April). At this point, they get no grains. They were both born with digestive issues (at this point we suspect that is unable to digest fruit whereas Ethan is OK with it). Ethan's autism seemed to 'go away' after we put him on the diet. At this point, you have to be around him awhile to pick up on the fact he isn't there all the time. We got rid of a lot of autistic signs when we removed soy (and soy lecithin) over a year ago. What I mean is, within a day of getting rid of it he stopped all repetitive tics.

[Guest guest]

Thanks for the advice. Right now I live in IL, and the district I

belong to provides services to your kid even if you homeschool. We

will move to OH next month, and I think Summit Mall will be within a

five to ten minute drive. I was told my school system is Bath Revere.

The boys are on a diet called Specific Carbohydrate Diet (since

beginning of April). At this point, they get no grains. They were

both born with digestive issues (at this point we suspect that

is unable to digest fruit whereas Ethan is OK with it). Ethan's

autism seemed to 'go away' after we put him on the diet. At this

point, you have to be around him awhile to pick up on the fact he

isn't there all the time. We got rid of a lot of autistic signs when

we removed soy (and soy lecithin) over a year ago. What I mean is,

within a day of getting rid of it he stopped all repetitive tics.

I am not sure where we will settle on a house. My parents live in

Medina, my brother in Lakewood, and my husband will work in Solon.

I printed out your email regarding doctors. I am hoping with Ohio's

philosophical exemption that more physicians are lenient. Here in

Chicago it is nearly impossible to keep from getting kicked out of a

practice. It doesn't matter that I nurse a minimum of two years

and feed my kids pretty healthy. What matters is that I vaccinate

them.

> Hi ! Welcome to the list and to Ohio! Correct me if I'm

wrong, but I'm thinking you live near Summit Mall. I don't live that

way, but I do work with a woman who lives in the Revere school

district. She has a step son in the high school and it seems like a

good school. My coworker has contacted the director of special ed

because she thinks her son (going into K) might have a disability and

the director was very helpful and nice. She can't say the same for

the principal or school psychologist. She is still working with her

ped to get a diagnosis, then she'll contact the school again. I

don't know which elementary school she was working with.

>

> My suggestion would be to schedule a visit for the school to which

your son would be going after you move. Visit the classroom, talk to

the principal and teacher and get a feel for how cooperative and open

they are to accommodating your son. I do want to point out that if

you choose not to enroll your son in the local school district, they

are under no obligation to provide other services such as speech

therapy or occupational therapy.

>

> Hudson is quite a distance from Summit mall, but I hear they

provide good services for children on the spectrum. My boss's boss's

wife teaches a classroom for children with disabilities in that

district. If you are looking for full or partial inclusion for your

son, I don't know how accommodating they are, though. If Hudson

isn't too far away, you may want to look there. On the other hand, I

have heard that some parents (of typical students) were not happy

with Hudson, so they recently started their own Catholic school

without help from their parish, Seton Academy. Why they were

unhappy, I don't know.

>

> My coworker really likes her son's ped; I'll ask her his name

today. I don't know how he feels about vaccines, but I certainly

understand how you feel. I too have 3 children. The oldest, on the

spectrum, has most of his shots; the younger son, NT, has most of his

baby shots, but not his K boosters (he's still in preschool), and my

youngest has only a few shots.

>

> Off White Pond Rd. is Dr. Waickman's office. He is an allergist,

not a ped or family medicine doctor. But last summer, he helped us

with an elimination diet with our son. Bobby had been GF-CF, but now

we know he can't have corn products, carrageenan, or sodium methyl

cellulose. Dr. Waickman also seems quite knowledgeable regarding

other interventions. He has helped our family a lot.

>

> I certainly hope you find the right doctor and school for your

family! Please let me know how your search goes.

>

> Marotta

[Guest guest]

n, Doesn't the GFCF diet seem like cakewalk after the SCD (we

started GFCF when Ethan was three)? It is my hope I can eventually

get rice back in them. We also had them eating raw fruits and

vegetables, so cooking them until they are mushy takes up a lot of

time. What other tests are you getting?

> Hi ,

>

> My son Davey is also on the SCD diet. six months now. My son has

digestive

> problems too. He's also been gfcf for over 2 years. I think the

SCD has

> helped him with digestion but he still has some issues. We're

getting more tests

> done.

>

> ~ n

>