Thanks

[Guest guest]

Carol in FL: Thank you for responding so quickly I have sent your

link on to NY I really appreciate your help. As I was reading all the

posts I saw that there are members that are taking Enbrel and now I

have a question for me.....I belong to a scleroderma group and no one

is using Enbrel my rheumy recently decided to have me try it as the

other meds are not working and he thinks it is worth a shot...the

question I have is how long did you have to wait to get your

presciption?

I have been on the waiting list for 3 months and the drug company cant

seem to give me a ball park figure for how long it may take. From what

I read it seems there has been good luck with the Enbrel in your

group, any input on this medication would be great as I havent met

anyone that is using it.....Thanks again....Kathi

[Guest guest]

Hi Carol,

Just wanted to let you know. There is a foundation that can get you your

Enbrel for free. It is a program for people with little or no insurance or

whose ins won't cover Enbrel. It is called the Rheumatoid Arthritis

Assistance Foundation. They are wonderful people and are a big help. Their

phone # is 1-800-282-7704. Hope this helps if you need Enbrel.

Good Luck

Stacey

[Guest guest]

Hi Kathi,

I'm glad the link was a help. I don't know anything about Enbrel really,

although if my Methotrexate doesn't start working soon I may be adding my

name to the list. Since I don't have insurance presently, I am hoping to do

well on the less costly medications. :-) Although if Enbrel were to make a

major difference in my life, I would somehow find the money.

Hopefully someone in the group will come along and answer your question

soon.

Warmest regards.Carol in FL

[ ] RE:Thanks

Carol in FL: Thank you for responding so quickly I have sent your

link on to NY I really appreciate your help. As I was reading all the

posts I saw that there are members that are taking Enbrel and now I

have a question for me.....I belong to a scleroderma group and no one

is using Enbrel my rheumy recently decided to have me try it as the

other meds are not working and he thinks it is worth a shot...the

question I have is how long did you have to wait to get your

presciption?

I have been on the waiting list for 3 months and the drug company cant

seem to give me a ball park figure for how long it may take. From what

I read it seems there has been good luck with the Enbrel in your

group, any input on this medication would be great as I havent met

anyone that is using it.....Thanks again....Kathi

[Guest guest]

Thank you so much, Stacey! If I end up needing it, I will definitely give

them a call.

All the best. Carol in FL

Re: [ ] RE:Thanks

Hi Carol,

Just wanted to let you know. There is a foundation that can get you your

Enbrel for free. It is a program for people with little or no insurance or

whose ins won't cover Enbrel. It is called the Rheumatoid Arthritis

Assistance Foundation. They are wonderful people and are a big help. Their

phone # is 1-800-282-7704. Hope this helps if you need Enbrel.

Good Luck

Stacey

[Guest guest]

Its all taken care of for you Paige. I'm glad to hear that you'll

still be sticking around with us, the more the merrier!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> > > > Ana -

> > > > Any news on your appeal with UHC?

> > > >

> > > > Dane's mom (DOC Band 2/14)

>

>

>

[Guest guest]

Paige,

Great news that is doing well with his progress!!!!! Please check in

when you can and keep us posted

' Mom

[Guest guest]

Paige:

Thanks so much for your kind words It's nice to hear. Glad to

hear is doing so well in his band. Please keep us updated!

Debbie Abby's mom DOCGrad

MI

> > > > Ana -

> > > > Any news on your appeal with UHC?

> > > >

> > > > Dane's mom (DOC Band 2/14)

>

>

>

[Guest guest]

Ladies all...I want to thank you all for your great messages...

this is a great group....a true goldmine....as a newbie you all have

made me feel so welcome and when you have connective tisssue diseases

people that understand a few a far between ,,,then when you find a

group that not only understands but welcomes you it really makes you

happy...Lynn, to you all I can say is that my rheumys letter seem to

make a big difference in the outcome...and someone had told me get

your doctor on your side....I was lucky he was on my side from the

start...once again thank you all.....hugs Kathi in OK

[Guest guest]

Well, as a matter of fact my daughter doesn't have CMT. I'm one of 6 children

and I, m the only one that has developed the disease. I got it from my

grandfather they diagnosed him with gout. Now they know that it was CMT. This

was after he died guess no one really knew much about CMT in his day. I also

have 2 children and 6 grandchildren and still the only one with it. I've managed

to survive all the

trials up to now, and I'm going to be able to handle anything thrown at me.

This disease will really test your life and we can all survive as long as we

don't try to do it alone and as long as you are in here or at least talk to

someone about how you are really feeling inside mentally and physically. We

all need a shoulder to lean on sometime. I hope all of you have that if not

there at least in here. I've learned so much in here and I was not diagnosed

until Oct. of last year. But I've had RSD for 16 years so one more name for

my problem was no big deal. I have a wonderful 2nd husband that challeges me

everyday and doesn't let me give up on myself. He started me in woodworking,

by telling me I could do anything I set my mind to. He has adapted all my

equipment to accommodate my need to elevate my legs 8 to 10 hours a day. So

hang in there everyone this old grandma is surviving and doing what ever she

wants to.

Stout

[Guest guest]

Did he actually say that? A few years ago, I could understand physicians

questioning FM, but now there is to much scientific evidence that it exists.

a

>

> thanks a and June for the kind words. I dont think my rheumatologist

> believes in fibromyalgia. For 3 yrs he wasnt sure if i had lupus or rheumatoid

> arthritis.Have a good day ,everyone!

>

>

>

> Orlando

>

>

>

> ---------------------------------

>

[Guest guest]

Dear Carol, Jan, Kathe and Kathy,

Thanks for all of your great suggestions. I think I

am going to be really busy this week trying to get all

of this together. I'll let you know how it goes.

Dathy - Congratulations! I am glad that SSA has

released your sons funds. I don't know if I am strong

enough to go through and endure everything it takes to

get SSI.

I hope you all have a great nights rest while you are

dreaming about cool blue water, sparkling white sand,

and the sound of waves quietly crashing; oh, I nearly

forgot, Cabana Boys serving tall, ice-cold glasses of

the refreshing drink of your choice. (I didn't

describe them because that is the part that you get to

personalize). Iris

__________________________________________________

[Guest guest]

Hi ,

Being so savy now about tests I got a copy of the lyme disease results

yesterday. I was happy to see the Western Blot had five bands and a positive

which is pretty strong results. I know Lyme disease isn't pretty

especially since I've been sick for a year it could take a while before I'm

fully well again, but at least I know it will get better and will go away

eventually. I'll admit I am a little concerned that this may not be all there

is to it. My ANA was awful high. I will be seeing a rheumy who specializes in

lyme arthritis and RA shortly. Hopefully he can reassure me it's all Lyme and

will be a thing of the past soon.

Debbie

wrote:Hi, Debbie. I'm glad to hear that you may be getting

somewhere on your

diagnosis.

Just a word of caution though. Lyme disease is very difficult to test

for and diagnose. There really is no consensus about what test or tests

should be used and how results should be interpreted. Moreover, the best

way to treat Lyme disease also is unclear, especially in instances of

prolonged infection.

I'm glad that your upcoming appointment is with a rheumatologist who

knows about Lyme disease. I'm not sure where you live, but maybe a

second opinion with someone who handles a lot of Lyme cases might be in

order.

My youngest sibling lives in NY, has a property upstate, and is a

gardening fool. She has removed numerous ticks from her body over the

last couple of years. She came here to IL for a visit a few months ago

and noticed that a tick came with her, hitchhiking on the back of her

knee. Seems as though that one was there long enough to do its dirty

work. About two weeks later, she had a terrible rash and ugly swelling

behind her knee. She didn't feel so great either. The doctors presumed

Lyme infection and treated her for three weeks with doxycycline. She

hasn't tested positive so far. She was lucky to actually notice the tick

and get early treatment, but she was told that she needed to have

several follow-ups and repeat Lyme tests in the near future.

There is a great deal that we don't know about Lyme disease, so it would

be in your best interest to seek out a physician who has a lot of

experience treating Lyme, especially if you suspect that you could have

been walking around with the infection for a year.

Good luck and keep us posted.

http://www.lymenet.org/

http://www.lyme.org/

http://www.nlm.nih.gov/medlineplus/lymedisease.html

http://www.cdc.gov/ncidod/dvbid/lyme/qa.htm

http://www2.lymenet.org/domino/file.nsf/UID/guidelines

http://www.rheuma21st.com/archives/Cutting_MalawistaLymeMay2000.html

http://www.advance.uconn.edu/00041006.htm

[ ] test results - + lyme

>

> Hi all,

>

> Well the lyme disease test I asked for came back positive. My PCP is

starting me on tetracycline. RA factor was negative again. There has

been much celebrating at work and at home. Funny to hear everyone

congratulating me on Lyme Disease! It all makes sense though, the

neurological, the arthritis, the fatigue, weakness and pain I've been

living with for the past year. I am hoping that this is all there is to

it.

>

> This is the funny part. I called my old PCP who had done a lyme test

one week into the numbness and tingling and she said it was negative. I

asked to verify that it was negative. She said I only had three bars of

10 and I needed 5 of 10 for the western blot, and maybe my current Dr

didn't know how to read these sophisticated tests. She said my rheumy

did a type of lyme disease test she hadn't seen before, a lyme titre,

and read the results of IGg and IGm as negative but positive for old

infection. I had a copy of my results and saw what she was looking at,

it was my Epstein Barr test!

>

> Started the tetracycline yesterday and hoping to have a second chance

at happier healthier days. I still have an appointment with the new

rheumy mid-September and plan on keeping it because I found he spoke on

guess what, Lyme Arthritis!

>

> happy today,

>

> Debbie

[Guest guest]

nne,

We are seeing Dr. Stuart Seiff in San Francisco. He performs at either UCSF

or Pacific Eye Associates. Both in SanFrancisco. (415) 923-3007. All of the

Dr.s I have seen said surgery should be done sooner than later due to the

babies becoming mobile and not being able to see good enough not to " crash "

into things. Also a concern for Dr. Seiff was that when they begin to walk

they have to lift their heads up to see and it offsets their balance and can

fall backwards. I havent seen this problem with my daughter yet but she is

just beginning to walk. If you have anymore questions feel free to ask.

I am concerned with how she will look after the first operation, but I am

sure she will be excited to see better. Dr. Seiff also said it is remarkable

how the children acr after the operation, he said its like it opens a whole

new world to them. Infact he said one mother called him after the operation

and askrd " what did you do?! Her child is a wild one now! "

Hope to talk to you soon

[Guest guest]

Hi nne,

Well I should start by saying that although I am the 4th generation with

BPES, I am also the first one to give this " small eye " phenomena a name in

my family. The internet has provided me with information that nobody in my

family has until now known about this rare disease.

Anyways, my information should still be in the bleph group. Look up #6,

which is from April 19, 2001. (subject is Hello!) If you have any more

specific questions, I will be happy to answer them.....

Good Luck with Caroline,

Dalia

>From: " mijanne2002 " <mijanneb@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis Thanks

>Date: Wed, 11 Sep 2002 06:56:36 -0000

>

>Dalia and ,

>Thank you so much for your reply - that helped a lot. My daughter,

>Caroline, seems smart - but it is hard to tell at this early stage -

>but she is extremely curious and seems very interested in her

>surroundings, so I found it hard to believe that she should have

>mental difficulties.

>Dalia, good luck at law school - I am sure that lawyers are

>intelligent - at least they are able to consume huge amounts of

>material :-). I would be happy to hear more details about BPES from

>you since it seems as though you and your family have lived with this

>for years. It would be great if you could share your experiences as

>to operations, results etc.

>, hope the operation will go well. Who is the doctor you

>are seeing? He seems to know something about this, and I am left in

>the dark here, since doctors in Denmark appears to have very limited

>knowledge, and I am afraid that wrong choices will be made if I am

>not persistent and know more factual information. Message yesterday

>was 'that there was no rush', and that this was just a small

>thing...and after the operation she would look perfectly normal. But

>I do not think that any here have performed this operation yet, so I

>want to find some experts - who can either provide advice to us, or

>maybe put some pressure on getting her to surgery in the US. Your

>help will be much appreciated.

>Would be great if he is right about the low set ears/intelligent

>remark - Caroline has low, cupped ears, so I hope he is right!

>Thanks again for your time,

>nne

>

>

>

>

[Guest guest]

Hi

Just want to say thanks for the kind words and sincere encouragement offered

regarding my new life and new start in Florida. Leaving AZ, a significant

other of 10 yrs, my daughter and grandchildren who also moved but to PA as I

moved to FL, and my home (still not sold)! has been a sad and life altering

experience to say the least but my faith and this group has kept me looking

ahead...looking through the windshield instead of the rear view mirror. Now I

just have to decide what to do with myself from here

THANK YOU ALL FOR YOUR SUPPORT

Love,

Joanne

[Guest guest]

Hi

Just want to thank all who wished me a happy birthday today's many mixed

feelings today..some good, while some not so good....guess that is expected.

With love to all of my family here ...and thank you again

Joanne

[Guest guest]

Hi Joanne,

I haven't been posting for awhile but happy birthday. Aren't Libra's

the greatest? Mind you, I am a bit bias. Mine is on the 16th.

Have a great day.

Love and hugs,

Al

[Guest guest]

Maybe run it by your doctor or pharmacist just in case, .

[ ] thanks

> Thanks i will just throw it out.

[Guest guest]

That's so wonderful !

Thanks for letting us know. My best to you.

Hugs,

Alan

--- In , " Hope " <angelahope@d...>

wrote:

> Hello everyone,

> Thanks so much for all the prayers and thoughts. The surgery was

a

> complete success. No lasting nerve or spinal cord damage. Thank the

good

> Lord. Now I just have to build the strength up in my leg again.

Talk to all

> of you soon. Wishing everyone a happy and pain free day.

>

> Love and Hugs to all,

>

>

>

[Guest guest]

That's great news, ! We're so happy to have you back.

Love and hugs,

Carol

[ ] Thanks

Hello everyone,

Thanks so much for all the prayers and thoughts. The surgery was a

complete success. No lasting nerve or spinal cord damage. Thank the good

Lord. Now I just have to build the strength up in my leg again. Talk to

all of you soon. Wishing everyone a happy and pain free day.

Love and Hugs to all,

[Guest guest]

, are they going to put you in Physical Therapy? They have me in

this at this time. It is SO SLOW! You " think " the " simple " exercises

aren't doing a flip... until you miss a day... then boy or boy! You are

so stove up and sore. Ha! You don't have to do a

" sweatty workout " bouncing around, to see results! (I have his tapes,

and about DIED when I tried to " follow " ! It was halarious! Glad I had my

blinds down and doors locked! They now rest peacefully UNDER the TV in

the cabinet! If anyone WANTS them...write me!)

My exercises I am doing at PT, are geared toward my back (being so

painful now, they are keeping exercises to a minimum and don't want it

injured any further). I can't sit on my tailbone, it causes too much

pain.

And my MS loss of " muscle " , well this will slowly work at building it

back up HOPEFULLY. Also will help me with walking.

It has really helped me. Though it is slow. And you feel it isn't

helping but it is.

I would suggest you don't try any " building your leg back up " without

the proper way (a Physical Therapist) and help, showing you how and

helping you. Showing you how, so you won't undo something that has been

done!

I am so glad it was not a tramatic surgery for you! Hopefully my new

Neuro I am seeing at the end of the month will be able to do something

about my back. Hopefully I won't have to go through surgery also.

Glad you are back and posting!

Susie

Hope wrote:

> Hello everyone,

> Thanks so much for all the prayers and thoughts. The surgery was a

> complete success. No lasting nerve or spinal cord damage. Thank the

> good

> Lord. Now I just have to build the strength up in my leg again. Talk

> to all

> of you soon. Wishing everyone a happy and pain free day.

>

> Love and Hugs to all,

>

>

>

[Guest guest]

Susie,

Hello. I start with the physical therapist tomorrow. I was going to start

seeing one anyway next week because my Rheumy thinks it might help some with

my fibro. The pain in my back and legs has gotten a lot worse. I have been

in an almost constant flare for the last 2 months. Since the back surgery

thing came up they just moved my appointment up from Thursday to Monday and

now they will be focusing more on my leg than anything else for a while.

They have told me that it shouldn't take very long for the muscle to get

back to where they were before the disc fragmented. Last time it took about

3 weeks of going 2 times a week and walking every other day. I am already

much better. I can actually feel my foot today. (something I haven't been

able to do in about a month)

I hope that your new neuro is able to help you. I can say nothing but

wonderful things about mine. This is twice now that he has had to go

fishing " for pieces of a fragmented disc. And replace them. I hope that you

don't have to have surgery too. What is wrong with your back? I still have 3

herniated discs in my back and one in my neck. Mine is from working as a CNA

for so many years. I badly abused my back. I am paying the price now.

Love and Hugs,

So, let the children play, inside your heart always,

And death you will defy, cause your youth will never die

-- Re: [ ] Thanks

, are they going to put you in Physical Therapy? They have me in

this at this time. It is SO SLOW! You " think " the " simple " exercises

aren't doing a flip... until you miss a day... then boy or boy! You are

so stove up and sore. Ha! You don't have to do a

" sweatty workout " bouncing around, to see results! (I have his tapes,

and about DIED when I tried to " follow " ! It was halarious! Glad I had my

blinds down and doors locked! They now rest peacefully UNDER the TV in

the cabinet! If anyone WANTS them...write me!)

My exercises I am doing at PT, are geared toward my back (being so

painful now, they are keeping exercises to a minimum and don't want it

injured any further). I can't sit on my tailbone, it causes too much

pain.

And my MS loss of " muscle " , well this will slowly work at building it

back up HOPEFULLY. Also will help me with walking.

It has really helped me. Though it is slow. And you feel it isn't

helping but it is.

I would suggest you don't try any " building your leg back up " without

the proper way (a Physical Therapist) and help, showing you how and

helping you. Showing you how, so you won't undo something that has been

done!

I am so glad it was not a tramatic surgery for you! Hopefully my new

Neuro I am seeing at the end of the month will be able to do something

about my back. Hopefully I won't have to go through surgery also.

Glad you are back and posting!

Susie

[Guest guest]

Thanks Carol. It's great to be back.

Love and Hugs,

So, let the children play, inside of your heart always,

And death you will defy, 'cause your youth will never die

-- RE: [ ] Thanks

That's great news, ! We're so happy to have you back.

Love and hugs,

Carol

[Guest guest]

My L spine is shot I guess. Herniated L-1 thru L-5 and pressing on the

S1 root nerve. Also the found C-6 & C-7 herniated last Sept and also

diagnosed DDD throughout my back. No doctor will adress my back for the

last few years. They seem to say the pain isn't THAT severe. Then with

the arthritis and the MS, they seem to dismiss the spine, and send me

yet ANOTHER doctor. I have been passed around so to speak!

Hopefully this Neuro I am seeing for the first time at the end of May,

will get to the bottom of it. I have NO FEELING in my right leg,

especially DEAD NUMB foot and big toe. Actually I am " numb " from the

waste down due to the MS they say. But the " numb " on the right leg to

toe, is like a DEAD numb. Can't explaine it. Probably is why all the

other doctors would not pursue it?

Susie

Hope wrote:

> Susie,

> Hello. I start with the physical therapist tomorrow. I was going to

> start

> seeing one anyway next week because my Rheumy thinks it might help

> some with

> my fibro. The pain in my back and legs has gotten a lot worse. I have

> been

> in an almost constant flare for the last 2 months. Since the back

> surgery

> thing came up they just moved my appointment up from Thursday to

> Monday and

> now they will be focusing more on my leg than anything else for a

> while.

> They have told me that it shouldn't take very long for the muscle to

> get

> back to where they were before the disc fragmented. Last time it took

> about

> 3 weeks of going 2 times a week and walking every other day. I am

> already

> much better. I can actually feel my foot today. (something I haven't

> been

> able to do in about a month)

> I hope that your new neuro is able to help you. I can say nothing

> but

> wonderful things about mine. This is twice now that he has had to go

> fishing " for pieces of a fragmented disc. And replace them. I hope

> that you

> don't have to have surgery too. What is wrong with your back? I still

> have 3

> herniated discs in my back and one in my neck. Mine is from working as

> a CNA

> for so many years. I badly abused my back. I am paying the price now.

>

> Love and Hugs,

>

>

> So, let the children play, inside your heart always,

> And death you will defy, cause your youth will never die

>

> -- Re: [ ] Thanks

>

> , are they going to put you in Physical Therapy? They have me in

>

> this at this time. It is SO SLOW! You " think " the " simple " exercises

> aren't doing a flip... until you miss a day... then boy or boy! You

> are

> so stove up and sore. Ha! You don't have to do a

> " sweatty workout " bouncing around, to see results! (I have his tapes,

> and about DIED when I tried to " follow " ! It was halarious! Glad I had

> my

> blinds down and doors locked! They now rest peacefully UNDER the TV in

>

> the cabinet! If anyone WANTS them...write me!)

> My exercises I am doing at PT, are geared toward my back (being so

> painful now, they are keeping exercises to a minimum and don't want it

>

> injured any further). I can't sit on my tailbone, it causes too much

> pain.

> And my MS loss of " muscle " , well this will slowly work at building it

> back up HOPEFULLY. Also will help me with walking.

> It has really helped me. Though it is slow. And you feel it isn't

> helping but it is.

> I would suggest you don't try any " building your leg back up " without

> the proper way (a Physical Therapist) and help, showing you how and

> helping you. Showing you how, so you won't undo something that has

> been

> done!

> I am so glad it was not a tramatic surgery for you! Hopefully my new

> Neuro I am seeing at the end of the month will be able to do something

>

> about my back. Hopefully I won't have to go through surgery also.

> Glad you are back and posting!

> Susie

>

>

[Guest guest]

>

Hi Darren,

You are right on about a herx vs a flare.....very similar pain, but

a herx is brought on usually by a change in dose( even starting AP

can cause this....It is a die off of the mycoplasma).. It is

recommended that any change in dose should be done slowly and

gradually, to try and prevent the herx from happening, if at all

possible.

Barb