Re: Glad I found you

[Guest guest]

ferengiblues wrote:

> My doctor would like me to take Methotrexate but I am scared of it.

> Advice from people who have used it would be great!

I was nervous when it was first proposed too but I have not had any real

problems with it. I am on the maximum dose now. I sometimes get a bit of an

upset stomach anywhere from a few hours after I take it to the next day but

most of the time I have no problems at all. I have not really found it has

helped me as much as I would like though but my rhuematologists keeps

thinking it has or that it will because it has kept the psoriasis end of

things pretty well controlled.

Gareeth

[Guest guest]

Hi Corina,

Welcome to the group.

You should check the archives under MTX or Methotrexate.

I feel like I've written so much of the same advice about MTX that I

must sound like a commercial.

But... THERE IS NOTHING TO BE AFRAID OF. I too had some concerns and

was apprehensive, but ultimately I was in so much pain and had so many

joints affected that I felt It certainly could not be any worse.

I am so glad. I am now 99% normal and NEVER had a side affect.

Now, I know MTX doesn't agree with everyone and it doesn't help

everyone. The way I saw it was that if I started experiencing negative

side effects, I could always stop taking it. Some folks are also

concerned about how it may adversely affect their bodies. Yes, it could

be a concern, but there are tests to monitor this. I have bi-monthly

blood tests, had my first liver biopsy after 5 years and can expect

them regularly every 2-5 years.

But, I was barely able to walk, multiple joints were affected, I slept

fitfully, every day was filled with pain and I couldn't do anything I

enjoyed anymore. So It was worth the risk for me, and I feel it has

paid off.

The future may tell me that my choice may not have been the best, but

it's been 5 years, If it takes 5 more to prove me wrong, I've gained 10

years that I very likely wouldn't have achieved. I didn't actively

contemplate suicide, but I'm not sure how much more I could take before

it started to look like an acceptable choice.

You have choices. Put the fear aside and make reasonable choices.

Weigh positives and negatives. This is not something you should decide

with your heart, but with your head.

Stay Well,

[Guest guest]

Hi im new too thought i would give my intro. My Name is Jo. I am the mom

of five kids. Never had psoriasis ever. I started with a stress fracture.

Then was diagnosed with crps which is complex regional pain syndrome, went

through heck to get someone to treat me for the psoriasis, as everything

they gave me didn't help at all. I was blessed to find a great

rheumatologist, who did some more blood work found my CRP level at 6.8

normal is ..6. I had lost 30 pounds, couldn't get out of bed couldn't walk

etc. Mind you I have kids to take care of. He started me first on

prednisone, then on the methotrexate. My psoriasis is almost gone. I

didn't get the classic case got it on my legs and back only. I am on my feet

again, there's a lot more to the story but though I'd introduce myself to all

of you.

Jo

[Guest guest]

I just wanted to tell you the side effects of the medications are

nothing compared to the joint damage and the severe chronic pain.

Do your research on the meds and try to prevent serious joint damage.

" stacymorris9999 " <STACYMORRIS07@...>

[Guest guest]

Hi,

I am 50 yrs old male. I have Ps for 22 yrs & Psa for the last 5 yrs. I have only

once gone to the derm. She prescribed some medicine after purchasing the same I

didn't use it. Because I am scared of steroids.

The last 4 yrs I have taken homeopathy with some relief.

I only apply 777 oil on the lesions.

I take Cod Liver Oil for the last 4 yrs.

I am extremely careful with my diet.

I avoid inflammation causing foods.

I go for a morning walk daily and keep a watch on my weight.

I have not skipped work for a single day because of my skin/joint problems.

I sometimes get pain but it is not lasting.

Now I am leaving for US to meet Dr Heng - Psoriagold.

Hoping to get  a complete cure for the skin problem.

Padmesh

India.

[Guest guest]

Dear Padmesh,

I am very glad that you could get help from supplements and still

walking and doing your job.apparently your PA is mild. I am taking

natural medicine and avoided conventional meds. But for me the damage to my

spine even before being diagnosed with PA had already disabled me. Please keep

us updated about your

skin problem.

wish you the very best of health,

Soudi

[Guest guest]

Hi,

 

I agree with you that early diagnosis is extremely important. I am sorry to hear

that your spine is affected.

 

My sister (married to an Indian medicine doctor) who is 4 yrs older to me was

the one who found that the small lesion on my elbow was Ps, 22 yrs back.

My brother in law gave me medicated oil (same as 777 oil) for application. He

used to prepare it himself.

I had used it for many years and the Ps was in control.

 

I was lucky in that sense.

 

I feel sad that so many have to depend on biologics for relief.

 

In India I think the best option is to go for Ayurvedic treatment. One of my

friend from Goa who had Ps underwent this treatment in Kerala (you need to stay

there for a month). He is completely cured.

 

Why not consider Krill oil to avoid further damage.

iHerb.com

 

Padmesh

Re: [ ] Glad I found you

Dear Padmesh,

I am very glad that you could get help from supplements and still

walking and doing your job.apparently your PA is mild. I am taking

natural medicine and avoided conventional meds. But for me the damage to my

spine even before being diagnosed with PA had already disabled me. Please keep

us updated about your

skin problem.

wish you the very best of health,

Soudi

[Guest guest]

For many people, it has allowed them " to go, get out, walk, dance. " I

guess if the pain and damage gets bad enough, you will decide that the

possible side effects are not as bad as what you are experiencing.

That's what happened for a lot of us. I'm so thankful for

these " scary " drugs that have given me a lot of my life back!

" S. Zorzi " <szorzi_1999@...>

[Guest guest]

Hello Trixi,

Welcome to the group. You have sure had quite an unfortunate series

of problems. I haven't really heard another member describe the

problems you feel in your thoracic area....but it sounds somewhat

unusual. I did wonder if maybe your were describing the effect of

junctional kyphosis, which is a not uncommon late complicaton of

scoilosis fusion and usually goes hand in hand with flatback.

You never said exactly how you came to our group....did you actually

get a flatback diagnosis from the unpleasant surgeon you saw?

We have a number of members from Ontario and I think the consensus

is that the 2 surgeons who seem to have the most experience with us

tricky post Harrington rod patients are Dr. at Toronto Western

and Dr Ford at Sunnybrook. If it is possible for you to eventually

get a referral to one, or both or them, you might find that it is

just a matter of finding a surgeon who really understands what is

going on with you, and also has the confidence and skills to help.

My personal observation is that most of us have found doctors to be

grouchy or aggressive or somehow offputting until we actually got to

one who was competent in this highly difficult surgery. Perhaps

their egos are compromised when they know in their heads that they

can't help you, but cant really admit that to you....hence the huffy

attitude. Its a guess.

Anyway, hopefully you will get enough of an evaluation from this new

doctor to find that you have the time to continue to seek opinions

if that is what you choose to do.

If you decide to come to the States you have a number of surgeons

who deal with us old scoli types in Boston and NYC. My surgeon,

Dr Rand in Boston would be someone who you can count on to give

you a good assessment of what it going on, and potential solutions.

In NYC DrBoachie and Errico are sure bets for good consultations.

I know the medical systems between us are not exactly

compatibile...so I guess my suggestion would be to first insist on

getting in to see the 2 names I mention...and if after that you are

not feeling like you have found you doctor...then reasses coming to

the US.

I will put your appt with DrAhn on the calendar so we will be

reiminded to get an update from you.

Again, I am sorry you are in such pain, but glad you found us.

Take Care, Cam

[Guest guest]

Thanks for the reply! As for how I came to your group, I think my

previous orthopedist mentioned flatback once, but I can't remember.

However, when looking for groups about scoliosis, I found your list,

and the description of flatback syndrome rings true for me.

Re: Dr. . The doctor I used to see was a lovely old guy

named at Toronto Western Hospital whom I connected with

after he operated on my brother (who has severe disk damage). When he

retired, he suggested I see one of his two young colleagues at Toronto

Western, Dr. or Dr. Rampersaud. By that time, my brother had

transferred to Dr. , so I tried him, too. I found him a bit

arrogant, and decided to try Dr. Rampersaud the next time I was having

pain. Rampersaud was nice enough the first couple of times I saw him,

which made the bad experience in May all the more surprising. I've

gone to some very personable orthopedists over the years (before each

one moved to the U.S.), but and Rampersaud display the

stereotypical surgeon personality type -- enormous ego, no apparent

knowledge of any treatment that doesn't involve surgery, little

interest in following up any surgery they haven't done themselves.

But after Dr. Rampersaud's arrogance, Dr. seems lovely by

comparison, and my brother appreciates him (apparently he's had spinal

surgery himself). Still, since the two work in the same clinic, I'm

reluctant to go back, since Rampersaud clearly thinks I'm trouble. My

experience with him was without a doubt the worst time I've ever spent

with a doctor, and I've seen lots of them. In the words of somebody

who rated him on RateMDs.com, he seems " severely threatened by

knowledgeable patients. " To be fair, he received other quite positive

recommendations, and I've no doubt he and Dr. are both excellent

surgeons. I also think they're operating in a medical system that has

limitations that didn't use to be there. Dr. used to work

closely with a physiotherapist who's very knowledgeable about

scoliosis -- I saw her for years, but she's vanished -- but when I

asked Dr. Rampersaud if he was associated with a physiotherapist, he

sourly told me to look in the Yellow Pages. I sensed he was frustrated

with a system that has driven physiotherapists out of the hospitals,

but I didn't appreciate his taking it out on me.

Anyway, we'll see what Dr. Anh says. I don't know how I'm going to

cope until then. I will keep Drs. Errico and Rand in mind, as well as

Dr. Ford in Toronto. I don't even know how to go about connecting with

an MD in the U.S. Travelling to New York or Boston would be do-able,

but can one simply call the doctor's office and say, I want an

appointment, I'm Canadian and I'm willing to pay? Buffalo would be

even closer, of course; a wonderful Canadian orthopod I saw in the

80s, Dr. Gillespie, moved to Buffalo, but I understand he has

since passed away.

Cheers,

Trixie.

>

> Hello Trixi,

>

> Welcome to the group. You have sure had quite an unfortunate series

> of problems. I haven't really heard another member describe the

> problems you feel in your thoracic area....but it sounds somewhat

> unusual. I did wonder if maybe your were describing the effect of

> junctional kyphosis, which is a not uncommon late complicaton of

> scoilosis fusion and usually goes hand in hand with flatback.

>

> You never said exactly how you came to our group....did you actually

> get a flatback diagnosis from the unpleasant surgeon you saw?

>

> We have a number of members from Ontario and I think the consensus

> is that the 2 surgeons who seem to have the most experience with us

> tricky post Harrington rod patients are Dr. at Toronto Western

> and Dr Ford at Sunnybrook. If it is possible for you to eventually

> get a referral to one, or both or them, you might find that it is

> just a matter of finding a surgeon who really understands what is

> going on with you, and also has the confidence and skills to help.

>

> My personal observation is that most of us have found doctors to be

> grouchy or aggressive or somehow offputting until we actually got to

> one who was competent in this highly difficult surgery. Perhaps

> their egos are compromised when they know in their heads that they

> can't help you, but cant really admit that to you....hence the huffy

> attitude. Its a guess.

>

> Anyway, hopefully you will get enough of an evaluation from this new

> doctor to find that you have the time to continue to seek opinions

> if that is what you choose to do.

>

> If you decide to come to the States you have a number of surgeons

> who deal with us old scoli types in Boston and NYC. My surgeon,

> Dr Rand in Boston would be someone who you can count on to give

> you a good assessment of what it going on, and potential solutions.

> In NYC DrBoachie and Errico are sure bets for good consultations.

>

> I know the medical systems between us are not exactly

> compatibile...so I guess my suggestion would be to first insist on

> getting in to see the 2 names I mention...and if after that you are

> not feeling like you have found you doctor...then reasses coming to

> the US.

>

> I will put your appt with DrAhn on the calendar so we will be

> reiminded to get an update from you.

>

> Again, I am sorry you are in such pain, but glad you found us.

>

> Take Care, Cam

>

[Guest guest]

Trixie, welcome to the group, but sorry you needed to find us.

Wow, your story really struck a chord with me, as I was born with

scoliosis and very nearly had my fusion at age nine. I was scared to

death, as I knew it would prevent my spine from continuing to grow, and

thank God the doctors decided it was not yet imperative, and it waited

until I was 13. I don't remember if I met Dr. Hall, though I've heard

he was at Children's in Boston, where I spent many hours of my

childhood. As it was I ended up quite a bit shorter than I should be,

but that's mostly from the scoliosis.

Regarding your question about seeing a US surgeon, I'd say go ahead and

try it. I know how scary it is to make that initial phone call, but

when I finally got up the courage to call Dr. Rand, all I had to do was

mention my Harrington rod and flatback, and his office manager was very

pleasant and told me what materials to send so the doctor could review

them and she could set up an appointment. I have heard from others

that if he doesn't feel he can help you they won't give you the time of

day, but to people he was able to help, like Cam and me, they're just

wonderful. I'd definitely say you're Canadian and willing to pay, and

if one doc doesn't want to see you try another, as policies are likely

to vary quite a bit.

Of course, this is only if you can't get to a Canadian surgeon who

really understands your problems. If you did end up having surgery it

could become extremely costly, so if you had to go with no coverage at

all it could be like purchasing a small house! (-- out in the country,

a fixer-upper, but I'm sure you know what I mean.)

I hope you find a doctor soon who is knowledgeable about your problems

and interested in helping. Please keep us updated.

Sharon

trixie_been wrote:

Thanks for the reply! As for how I came to your group, I think my

previous orthopedist mentioned flatback once, but I can't remember.

However, when looking for groups about scoliosis, I found your list,

and the description of flatback syndrome rings true for me.

Re: Dr. . The doctor I used to see was a lovely old guy

named at Toronto Western Hospital whom I connected with

after he operated on my brother (who has severe disk damage). When he

retired, he suggested I see one of his two young colleagues at Toronto

Western, Dr. or Dr. Rampersaud. By that time, my brother had

transferred to Dr. , so I tried him, too. I found him a bit

arrogant, and decided to try Dr. Rampersaud the next time I was having

pain. Rampersaud was nice enough the first couple of times I saw him,

which made the bad experience in May all the more surprising. I've

gone to some very personable orthopedists over the years (before each

one moved to the U.S.), but and Rampersaud display the

stereotypical surgeon personality type -- enormous ego, no apparent

knowledge of any treatment that doesn't involve surgery, little

interest in following up any surgery they haven't done themselves.

But after Dr. Rampersaud's arrogance, Dr. seems lovely by

comparison, and my brother appreciates him (apparently he's had spinal

surgery himself). Still, since the two work in the same clinic, I'm

reluctant to go back, since Rampersaud clearly thinks I'm trouble. My

experience with him was without a doubt the worst time I've ever spent

with a doctor, and I've seen lots of them. In the words of somebody

who rated him on RateMDs.com, he seems "severely threatened by

knowledgeable patients." To be fair, he received other quite positive

recommendations, and I've no doubt he and Dr. are both excellent

surgeons. I also think they're operating in a medical system that has

limitations that didn't use to be there. Dr. used to work

closely with a physiotherapist who's very knowledgeable about

scoliosis -- I saw her for years, but she's vanished -- but when I

asked Dr. Rampersaud if he was associated with a physiotherapist, he

sourly told me to look in the Yellow Pages. I sensed he was frustrated

with a system that has driven physiotherapists out of the hospitals,

but I didn't appreciate his taking it out on me.

Anyway, we'll see what Dr. Anh says. I don't know how I'm going to

cope until then. I will keep Drs. Errico and Rand in mind, as well as

Dr. Ford in Toronto. I don't even know how to go about connecting with

an MD in the U.S. Travelling to New York or Boston would be do-able,

but can one simply call the doctor's office and say, I want an

appointment, I'm Canadian and I'm willing to pay? Buffalo would be

even closer, of course; a wonderful Canadian orthopod I saw in the

80s, Dr. Gillespie, moved to Buffalo, but I understand he has

since passed away.

Cheers,

Trixie.

>

> Hello Trixi,

>

> Welcome to the group. You have sure had quite an unfortunate

series

> of problems. I haven't really heard another member describe the

> problems you feel in your thoracic area....but it sounds somewhat

> unusual. I did wonder if maybe your were describing the effect of

> junctional kyphosis, which is a not uncommon late complicaton of

> scoilosis fusion and usually goes hand in hand with flatback.

>

> You never said exactly how you came to our group....did you

actually

> get a flatback diagnosis from the unpleasant surgeon you saw?

>

> We have a number of members from Ontario and I think the consensus

> is that the 2 surgeons who seem to have the most experience with

us

> tricky post Harrington rod patients are Dr. at Toronto

Western

> and Dr Ford at Sunnybrook. If it is possible for you to eventually

> get a referral to one, or both or them, you might find that it is

> just a matter of finding a surgeon who really understands what is

> going on with you, and also has the confidence and skills to help.

>

> My personal observation is that most of us have found doctors to

be

> grouchy or aggressive or somehow offputting until we actually got

to

> one who was competent in this highly difficult surgery. Perhaps

> their egos are compromised when they know in their heads that they

> can't help you, but cant really admit that to you....hence the

huffy

> attitude. Its a guess.

>

> Anyway, hopefully you will get enough of an evaluation from this

new

> doctor to find that you have the time to continue to seek opinions

> if that is what you choose to do.

>

> If you decide to come to the States you have a number of surgeons

> who deal with us old scoli types in Boston and NYC. My surgeon,

> Dr Rand in Boston would be someone who you can count on to

give

> you a good assessment of what it going on, and potential

solutions.

> In NYC DrBoachie and Errico are sure bets for good consultations.

>

> I know the medical systems between us are not exactly

> compatibile...so I guess my suggestion would be to first

insist on

> getting in to see the 2 names I mention...and if after that you

are

> not feeling like you have found you doctor...then reasses coming

to

> the US.

>

> I will put your appt with DrAhn on the calendar so we will be

> reiminded to get an update from you.

>

> Again, I am sorry you are in such pain, but glad you found us.

>

> Take Care, Cam

>

[Guest guest]

Nice to meet you, Sharon. At age nine, I had no understanding that a

spinal fusion would make me stop growing, and for some reason it never

occurred to my parents. Either that, or Dr. Hall scared them into

thinking it was a minor but necessary side effect and they've been too

embarrassed to admit it to me! They feel bad enough now as it is, and

so we don't talk about it much.

My brother just told me about a fancy new spinal clinic just outside

Toronto that opened a couple of years ago and doesn't require either

referrals or long waits -- I'd never heard of it, and I guess my GP

hasn't either. I'm going to check them out.

I hope I'll find the time to read through as many of the posts here as

I can.

Cheers,

Trixie

> > >

> > > Hello Trixi,

> > >

> > > Welcome to the group. You have sure had quite an unfortunate series

> > > of problems. I haven't really heard another member describe the

> > > problems you feel in your thoracic area....but it sounds somewhat

> > > unusual. I did wonder if maybe your were describing the effect of

> > > junctional kyphosis, which is a not uncommon late complicaton of

> > > scoilosis fusion and usually goes hand in hand with flatback.

> > >

> > > You never said exactly how you came to our group....did you actually

> > > get a flatback diagnosis from the unpleasant surgeon you saw?

> > >

> > > We have a number of members from Ontario and I think the consensus

> > > is that the 2 surgeons who seem to have the most experience with us

> > > tricky post Harrington rod patients are Dr. at Toronto Western

> > > and Dr Ford at Sunnybrook. If it is possible for you to eventually

> > > get a referral to one, or both or them, you might find that it is

> > > just a matter of finding a surgeon who really understands what is

> > > going on with you, and also has the confidence and skills to help.

> > >

> > > My personal observation is that most of us have found doctors to be

> > > grouchy or aggressive or somehow offputting until we actually got to

> > > one who was competent in this highly difficult surgery. Perhaps

> > > their egos are compromised when they know in their heads that they

> > > can't help you, but cant really admit that to you....hence the huffy

> > > attitude. Its a guess.

> > >

> > > Anyway, hopefully you will get enough of an evaluation from this new

> > > doctor to find that you have the time to continue to seek opinions

> > > if that is what you choose to do.

> > >

> > > If you decide to come to the States you have a number of surgeons

> > > who deal with us old scoli types in Boston and NYC. My surgeon,

> > > Dr Rand in Boston would be someone who you can count on to give

> > > you a good assessment of what it going on, and potential solutions.

> > > In NYC DrBoachie and Errico are sure bets for good consultations.

> > >

> > > I know the medical systems between us are not exactly

> > > compatibile...so I guess my suggestion would be to first insist on

> > > getting in to see the 2 names I mention...and if after that you are

> > > not feeling like you have found you doctor...then reasses coming to

> > > the US.

> > >

> > > I will put your appt with DrAhn on the calendar so we will be

> > > reiminded to get an update from you.

> > >

> > > Again, I am sorry you are in such pain, but glad you found us.

> > >

> > > Take Care, Cam

> > >

> >

> >

>

[Guest guest]

Well, come to think of it I was nearly ten when I was put in the

hospital for "observation" with the thought being they would probably

operate. And my dad was always asking the doctors questions and

telling me everything he'd learned, on top of my hearing the doctors

themselves. All my life it seemed he was always talking about the

surgery I was going to have at age 13 or 14, completely clueless about

how much I hated hearing it. My mother said I MIGHT have to have

surgery -- she was in denial -- and I always preferred her version. I

know at that age I didn't have the ability to reason with the adults

about it or to talk anybody out of anything. In fact my dad told me

not to tell my mother they were talking about surgery at that time, as

he feared she would try to prevent him from taking me to the hospital,

and while I think I instinctively knew he was wrong to put that sort of

burden on me, I did keep my mouth shut. I know he was scared himself.

He took as long as possible taking me from Maine to Boston to be

admitted to Children's, stopping at lots of beaches and taking me to an

awesome amusement park. Then we visited several relatives in the

Boston area, and when it was time to go in to the hospital he had to

drag me kicking and crying from my grandmother's house.

All that to say you were probably better off not knowing!

Good luck on the spine center visit.

Sharon

trixie_been wrote:

Nice to meet you, Sharon. At age nine, I had no understanding that

a

spinal fusion would make me stop growing, and for some reason it never

occurred to my parents. Either that, or Dr. Hall scared them into

thinking it was a minor but necessary side effect and they've been too

embarrassed to admit it to me! They feel bad enough now as it is, and

so we don't talk about it much.

My brother just told me about a fancy new spinal clinic just outside

Toronto that opened a couple of years ago and doesn't require either

referrals or long waits -- I'd never heard of it, and I guess my GP

hasn't either. I'm going to check them out.

I hope I'll find the time to read through as many of the posts here as

I can.

Cheers,

Trixie

> > >

> > > Hello Trixi,

> > >

> > > Welcome to the group. You have sure had quite an

unfortunate series

> > > of problems. I haven't really heard another member

describe the

> > > problems you feel in your thoracic area....but it sounds

somewhat

> > > unusual. I did wonder if maybe your were describing the

effect of

> > > junctional kyphosis, which is a not uncommon late

complicaton of

> > > scoilosis fusion and usually goes hand in hand with

flatback.

> > >

> > > You never said exactly how you came to our group....did

you actually

> > > get a flatback diagnosis from the unpleasant surgeon you

saw?

> > >

> > > We have a number of members from Ontario and I think the

consensus

> > > is that the 2 surgeons who seem to have the most

experience with us

> > > tricky post Harrington rod patients are Dr. at

Toronto Western

> > > and Dr Ford at Sunnybrook. If it is possible for you to

eventually

> > > get a referral to one, or both or them, you might find

that it is

> > > just a matter of finding a surgeon who really

understands what is

> > > going on with you, and also has the confidence and

skills to help.

> > >

> > > My personal observation is that most of us have found

doctors to be

> > > grouchy or aggressive or somehow offputting until we

actually got to

> > > one who was competent in this highly difficult surgery.

Perhaps

> > > their egos are compromised when they know in their heads

that they

> > > can't help you, but cant really admit that to

you....hence the huffy

> > > attitude. Its a guess.

> > >

> > > Anyway, hopefully you will get enough of an evaluation

from this new

> > > doctor to find that you have the time to continue to

seek opinions

> > > if that is what you choose to do.

> > >

> > > If you decide to come to the States you have a number of

surgeons

> > > who deal with us old scoli types in Boston and NYC. My

surgeon,

> > > Dr Rand in Boston would be someone who you can

count on to give

> > > you a good assessment of what it going on, and potential

solutions.

> > > In NYC DrBoachie and Errico are sure bets for good

consultations.

> > >

> > > I know the medical systems between us are not exactly

> > > compatibile...so I guess my suggestion would be to

first insist on

> > > getting in to see the 2 names I mention...and if after

that you are

> > > not feeling like you have found you doctor...then

reasses coming to

> > > the US.

> > >

> > > I will put your appt with DrAhn on the calendar so we

will be

> > > reiminded to get an update from you.

> > >

> > > Again, I am sorry you are in such pain, but glad you

found us.

> > >

> > > Take Care, Cam

> > >

> >

> >

>

[Guest guest]

Welcome Connie!

I have been a member of the group for a little over a year but at times, not too

good at posting! I always try to read others posts every day at least! You are

going to find the most sincere, thoughtful & caring group of people with our

group! Someone in our group has been or is at the same place each of us is at

currently  (hope that's proper grammer!!) so there are always ears out there to

listen, to comfort, to befriend you and completely UNDERSTAND!!!

 

This group is a great network of individuals of varying ages throughout the USA

as well as some good friends in the UK, Australia & beyond!

 

I personally have found this group to be a fantastic source of information and

sharing of information, symptoms, etc.  Again, welcome to our group of friends!

in SC

 

 

ltdavis_jrdavis@...

From: sunspotcme <sunspotcme@...>

Subject: [ ] Glad I found you

Date: Saturday, August 8, 2009, 4:46 PM

 

Hello Group,

I am new here and this is my first post. I am also new to RA - woke up one

morning last December in a full blown flare that involved nearly all of my

joints. Initial blood tests were inconclusive and the Rheumy I see says that my

symptoms " act like RA " . I was prescribed Mobic, added Prednisone to that a few

months ago , have received injections to relieve inflammation. I saw my Rheumy

last Thursday and he saw that I am not getting better - this is progressing. I

took my first dose of MTX that night and continue with the Mobic & Prednisone.

I wanted to tell you that I have found this group to be so helpful! I have been

wondering about so many things from meds to skin discolorations that so many

seem to share. For me part of this experience has left me feeling very alone &

misunderstood. I so appreciate finding a place where there are people who have

been there, are there and care.

Thanks to all,

Connie

[Guest guest]

Hi Connie, I'm from the UK.

Welcome to the most fantastic group of human beings anywhere in this old mad

world of ours.

I was like you 12 years ago. One day I was working away, the next morning I woke

up and was in agony all over. Like you, I will never forget that day. Since then

it's been an education and minefield, try this that and the other. Some meds

work, some don't and some even get you back on your feet. Most people start with

MXT, but if that doesn't work, then you'll progress through the ranks to the big

guns, the Biologics.

You'll learn a lot about your condition here, you'll find you are most certainly

not on your own and hopefully make good friends along the way. Any questions? No

problem, there will be someone with an answer or at least someone who knows

someone. Then there's the Information Queen, what she doesn't know is not

worth knowing.

Hope you are pain free and keeping your spirits up. We share the good times and

the bad but always with love and care for one another. After a week you'll think

you've always been here.

Love and hugs

x

From: sunspotcme <sunspotcme@...>

Subject: [ ] Glad I found you

Date: Saturday, 8 August, 2009, 9:46 PM

 

Hello Group,

I am new here and this is my first post. I am also new to RA - woke up one

morning last December in a full blown flare that involved nearly all of my

joints. Initial blood tests were inconclusive and the Rheumy I see says that my

symptoms " act like RA " . I was prescribed Mobic, added Prednisone to that a few

months ago , have received injections to relieve inflammation. I saw my Rheumy

last Thursday and he saw that I am not getting better - this is progressing. I

took my first dose of MTX that night and continue with the Mobic & Prednisone.

I wanted to tell you that I have found this group to be so helpful! I have been

wondering about so many things from meds to skin discolorations that so many

seem to share. For me part of this experience has left me feeling very alone &

misunderstood. I so appreciate finding a place where there are people who have

been there, are there and care.

Thanks to all,

Connie

[Guest guest]

Hi Connie: Welcome to our wonderful group. We are so glad you joined

us.

I was so sorry to read that you have R.A. You will never feel alone

here. R.A. reared its ugly head to me 6 1/2 years ago. I had never

heard of it and knew nothing about it. I was so scared.

Being in our group was the best thing I ever did for myself. The people

here are so caring, loving, and very understanding. I am blessed to be

here.

I hope you find the right " cocktail " of meds. so you can feel better

soon. Wishing you many pain free days ahead.

Again, welcome here. You did a wonderful thing for yourself.

Hugs,

Barbara

>

> From: sunspotcme sunspotcme@...

> Subject: [ ] Glad I found you

>

> Date: Saturday, 8 August, 2009, 9:46 PM

>

>

>

>

>

>

>

>

>

>

>

>

> Hello Group,

>

>

>

> I am new here and this is my first post. I am also new to RA - woke up

one morning last December in a full blown flare that involved nearly all

of my joints. Initial blood tests were inconclusive and the Rheumy I see

says that my symptoms " act like RA " . I was prescribed Mobic, added

Prednisone to that a few months ago , have received injections to

relieve inflammation. I saw my Rheumy last Thursday and he saw that I am

not getting better - this is progressing. I took my first dose of MTX

that night and continue with the Mobic & Prednisone.

>

> I wanted to tell you that I have found this group to be so helpful! I

have been wondering about so many things from meds to skin

discolorations that so many seem to share. For me part of this

experience has left me feeling very alone & misunderstood. I so

appreciate finding a place where there are people who have been there,

are there and care.

>

>

>

> Thanks to all,

>

>

>

> Connie

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Welcome to the group. People often underestimate the emotional impact being

diagnosed with a chorinc illness. It does make you feel alone, isolated and

depressed. Words like " getting worse " and " progressive " don't help much either.

I advise you to hang inm there, you'll learn to manage the disease and feel

better when an effective treatment kicks in for you.

Stan

Seattle, Cloudy.

Sent: Saturday, August 8, 2009 1:46:42 PM GMT -08:00 US/Canada Pacific

Subject: [ ] Glad I found you

Hello Group,

I am new here and this is my first post.  I am also new to RA - woke up one

morning last December in a full blown flare that involved nearly all of my

joints.  Initial blood tests were inconclusive and the Rheumy I see says that

my symptoms " act like RA " .  I was prescribed Mobic, added Prednisone to that a

few months ago , have received injections to relieve inflammation.  I saw my

Rheumy last Thursday and he saw that I am not getting better - this is

progressing.  I took my first dose of MTX that night and continue with the

Mobic & Prednisone.  

I wanted to tell you that I have found this group to be so helpful!  I have

been wondering about so many things from meds to skin discolorations that so

many seem to share.  For me part of this experience has left me feeling very

alone & misunderstood.  I so appreciate finding a place where there are people

who have been there, are there and care.

Thanks to all,

Connie

[Guest guest]

Connie, welcome to our family!

I'm sorry to hear about your dx, but glad you found the group. Were

here for you, and we will help you in any way we can. We all know what

your going through. It's nice to talk with others who understand. Hope

to hear more about you,

Tawny

>

> Hello Group,

>

> I am new here and this is my first post. I am also new to RA - woke up

one morning last December in a full blown flare that involved nearly all

of my joints. Initial blood tests were inconclusive and the Rheumy I see

says that my symptoms " act like RA " . I was prescribed Mobic, added

Prednisone to that a few months ago , have received injections to

relieve inflammation. I saw my Rheumy last Thursday and he saw that I am

not getting better - this is progressing. I took my first dose of MTX

that night and continue with the Mobic & Prednisone.

> I wanted to tell you that I have found this group to be so helpful! I

have been wondering about so many things from meds to skin

discolorations that so many seem to share. For me part of this

experience has left me feeling very alone & misunderstood. I so

appreciate finding a place where there are people who have been there,

are there and care.

>

> Thanks to all,

>

> Connie

>

[Guest guest]

Connie,

Welcome to the group... You'll never be disappointed when looking for support

here! We all come here for our own different reasons, but I feel we are all

looking to not feel left alone. These diseases love to make us feel isolated

and this site is our war zone to not let it happen....

Hope you feel comfortable here with any and all of your questions, concerns or

your own advice to help others...

Bonnie, NJ

>

> Hello Group,

>

> I am new here and this is my first post. I am also new to RA - woke up one

morning last December in a full blown flare that involved nearly all of my

joints. Initial blood tests were inconclusive and the Rheumy I see says that my

symptoms " act like RA " . I was prescribed Mobic, added Prednisone to that a few

months ago , have received injections to relieve inflammation. I saw my Rheumy

last Thursday and he saw that I am not getting better - this is progressing. I

took my first dose of MTX that night and continue with the Mobic & Prednisone.

> I wanted to tell you that I have found this group to be so helpful! I have

been wondering about so many things from meds to skin discolorations that so

many seem to share. For me part of this experience has left me feeling very

alone & misunderstood. I so appreciate finding a place where there are people

who have been there, are there and care.

>

> Thanks to all,

>

> Connie

>

[Guest guest]

Welcome to the group, Connie. I think you'll find you are not alone when you

come here. I was diagnosed with sero-negative RA in 2006 and due to lack of

insurance, the progression of finding the right combo of meds for me has been

rather on the slow side. I am taking Sulfasalazine (SSZ), Methotrexate (MTX)

injections and this past week, my Rheumy finally agreed to let me try the

antibiotic protocol (AP) with Minocycline. I've tried Enbrel and ended up with a

double ear and sinus infection after just 7 weeks. He wanted me to try it again,

but I told him I wanted to do this first. If it doesn't work, then I'll give

Enbrel another shot. Alot of people here have had terrific results with it, so

we'll see.

I have been so grateful for this group for not only the support of people who

REALLY understand what we go through, but the information that provides

that helps to keep us informed and up to date on all the advances coming our

way. I believe that knowledge is power. I pray you get the relief you are

seeking and that the right combo of meds comes around soon.

Holler, rant, vent anytime at us. We're all here for you.....Doreen

Hello Group,

I am new here and this is my first post. I am also new to RA - woke up one

morning last December in a full blown flare that involved nearly all of my

joints. Initial blood tests were inconclusive and the Rheumy I see says that my

symptoms " act like RA " . I was prescribed Mobic, added Prednisone to that a few

months ago , have received injections to relieve inflammation. I saw my Rheumy

last Thursday and he saw that I am not getting better - this is progressing. I

took my first dose of MTX that night and continue with the Mobic & Prednisone.

I wanted to tell you that I have found this group to be so helpful! I have

been wondering about so many things from meds to skin discolorations that so

many seem to share. For me part of this experience has left me feeling very

alone & misunderstood. I so appreciate finding a place where there are people

who have been there, are there and care.

Thanks to all,

Connie

[Guest guest]

Hello Connie. I too am a newbie to the group. In reading some of the posts

I too see that I am not alone in this battle and some of the things

discussed are similar to me.

Irish aka Ms Pisces

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100126575x1222846709x1201493018/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=115 & bcd

=JulystepsfooterNO115)

[Guest guest]

WOW!!

I already thought this group was great before I posted and all of you kind

people just proved it again.  Thanks to all of you for your responses.  It means

so much that you took the time to reply.

I look forward to getting to know all of you better and am hoping for the best

for everyone.

Wishing you well,

Connie

From: Mimi <mimi212@...>

Subject: [ ] Re: Glad I found you

Date: Sunday, August 9, 2009, 10:28 AM

 

Welcome to the group, Connie. I think you'll find you are not

alone when you come here. I was diagnosed with sero-negative RA in 2006 and due

to lack of insurance, the progression of finding the right combo of meds for me

has been rather on the slow side. I am taking Sulfasalazine (SSZ), Methotrexate

(MTX) injections and this past week, my Rheumy finally agreed to let me try the

antibiotic protocol (AP) with Minocycline. I've tried Enbrel and ended up with a

double ear and sinus infection after just 7 weeks. He wanted me to try it again,

but I told him I wanted to do this first. If it doesn't work, then I'll give

Enbrel another shot. Alot of people here have had terrific results with it, so

we'll see.

I have been so grateful for this group for not only the support of people who

REALLY understand what we go through, but the information that provides

that helps to keep us informed and up to date on all the advances coming our

way. I believe that knowledge is power. I pray you get the relief you are

seeking and that the right combo of meds comes around soon.

Holler, rant, vent anytime at us. We're all here for you.....Doreen

[Guest guest]

Hi Connie,

You have found a wonderful place, and I hope you stay. I am looking

forward to knowing more about you. It's nice to chat to other's who

understand. I'm always here if you need to talk.

Have a good night,

Tawny

>

> WOW!!

> I already thought this group was great before I posted and all of you

kind people just proved it again. Thanks to all of you for your

responses. It means so much that you took the time to reply.

> I look forward to getting to know all of you better and am hoping for

the best for everyone.

> Wishing you well,

>

> Connie