Re: hello i'm new here

[Guest guest]

Hi ,

Welcome to the list!

What is a MRSA infection? you said you are resistant to antibiotics... have

you tried any herbal or natural immune boosters like vitamin C? Just a

thought!

" i am on DNR (do not resuscitate) "

EEeeeeooooohhh why? (If you dont mind my asking? - if you do just tell me to

shut up - I wont be offended!!

" and am very tired of being sick like this. "

I am sure you are. Sounds like you are in the wars poor thing.

" and even so i have had 8 respiratory and 1 cardiac arrest in the last 4

days but i don't want to be in ICU or ever be intubated again (on average i

have been intubated about 30 times a year all my life) "

Sweet one my heart goes out to you. This sounds awful. Would a hospital not

be a better place for you? Although I do understand how clinical and

impersonal they are.

" my spo2 sits on about 75% all the time and my FEV1 is 0.8. "

This is all new to me...what does all that mean?

" sorry about the whining. in future plsts i'll be more positive. "

Whine away! Being sick does not have much to recommend. This is a support

group remember!! Vent all you need, we are here to love and share, as will

you on our bad days I am sure.

" i've actually got a good sense of humour and plenty of funny hospital

stories to tell "

Tell away! Laughter is the best medicine and we could all use a good laugh!

Welcome to the list honey! Share anything you want - piccies, stories,

jokes, vent, scream, e-cards - anything!!

" anyway i'm 22 and live in australia. if anyone wants to icq me my no. is

67811928. i love getting messages and chatting as i am too sick to go out

and make friends. i am online most of the day and sometimes all night too. i

am happy to be on this list and if anyone knows any treatments i can try or

any way to breathe better i would be grateful to hear of them. "

I am 26 and in Australia and know some excellent alternate medico's so tell

me where you are and perhaps I can give you some names!

I think alot of us here are on ICQ.... we should find out everyone's

numbers!!

Anyhow, welcome again, and look forward to getting to know you more!

with love

Aisha.

[Guest guest]

dear ,

Don't worry, you're not whining too much for us. i remeber having an

infection for like a year that didn't go away with anithing, until my

cardio gve me something called a quinone, that's the class of drug, and

I can't remember what it was, but it was also used for malaria. Lots of

malaria here in Venezuela!

vanessa

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[Guest guest]

Welcome Kirsty,

I am so sorry to hear that the system has bounced you around so much. . . .almost a year later you are seeing the specialist. Hopefully will see your post and respond. She lives in England somewhere. :0) And has navigated the system. I'm from Kansas, so I"m not real up on your cities etc. Anyhow, this group has a wealth of knowledge and experience pertaining to infantile idiopathic scoliosis. I would recommend reading the www.infantilescoliosis.org website in its entirety. There is alot of info there to get you started on learing all the confusing terminology orthos like to use. There are also treatment options and personal stories for many children with scoliosis. Also available is a video done by Dr. Min Mehta (from Stanmore) documenting her work and Serial Corrective Plaster Casting. This group also has alot of info in the files section, articles,

photos of kids etc.

Since your appt is in October now is the time to prepare a list of things you want and need to know about Sammi's scoliosis. Basics are the Cobb Angle (degree of curvature) and the RVAD (Rib Vertebral Angle Degree). If the RVAD is over 20 then the scoliosis will likely progress. If she is visibly worse to you, then of course she is progressing. If the doctor told you her scoliosis was idiopathic (no known cause) that means he/she could see no bone (vertebrae) malformations causing the scoliosis which would classify her then as congenital scoliosis.

Has it already affected her so much that she is walking differently? My daughter Moriah reached that critical point and I remember her being twisted over, having trouble breathing, and not having any energy. I will definitely be thinking of you guys and praying you get the answers you need to help Sammi's body fight the scoliosis. Please ask any questions of this group. They are a great bunch of parents and very willing to share. Keep us posted on how she is doing.

Shellie Grant

Mom to Moriah age 8, congenital scoliosis, tetrology of fallot. age 4, hypoglecemia (that's all thank GOD!!!)ttytart1975 <gadget.themorrigan@...> wrote:

Hi i'm Kirsty,married to Ade. We have 2 daughters Rowan 7 and Samina 2. I first noticed that Sammi's back didn't look right in November last year. I took her to my GP who took a month to refer her to a specialist who we saw in April. After examining her and x-raying her he told us she has idiomatic infantile scoliosis,and her curve is on the left. He said he couldn't help us as he wasn't sure how to deal with it so he has referred us to the Royal orthapeadic hospital in Birmingham. We have the appointment in October. Her poor back has gotten worse with all the delays. I'm hoping to learn more about this and understand what this all means for my Sammi apart from a funny walk and a twisted back.__________________________________________________

[Guest guest]

Hello Kirsty and welcome to the scoliosis rollercoaster!

I am Bert and our daughter Bridget has scoliosis which we travel to Salt Lake City to have treated. We had our first two casts put on at the Royal Orthopaedic Hospital in Stanmore, england.

You sound like you have already experienced some of the frustration of trying to find someone who will listen and look and who knows what infantile idiopathic scoliosis is all about. It is very different from the more common adolescent scoliosis and you need to find an expert quickly.

You need to move quickly as the best time to try to correct Sammi's curve is now while she is still growing rapidly. ring around and find a hospital in Birmingham where they are applying serial plaster casts to correct scoliosis. Go to the SAUK (Scoliosis Association of the UK0 site and find the ARISE foundation. Ring them and see who they recommend for infantile idiopathic scoliosis. Be persistent and annoying and make them listen to you.

, who Shellie referred to, went to Stanmore (north London) and saw Mr Ben . I don't think he is there anymore. You could even ring the RNOH and ask to be put through to the plaster theatre and ask there who is doing a lot of work with infantile idiopathic scoliosis and applying serial plaster casts. The nurses there will give you some names. (ask for Lily) Once you have some names of people you want to see, go after them. If you can see that Sammi's scoliosis is progressing you need to get some treatment quickly from someone with experience. You don't want to waste any time.

Good luck and remember to get some attention you need to make some noise. I was told when Bridget was 10 months that her curve was an optical illusion and all in my imagination. Now, 4 years later I deeply regret being put off so easily and not trusting my instincts.

I hope I haven't stressed you out any more than you already are.

Bert

battytart1975 <gadget.themorrigan@...> wrote:

Hi i'm Kirsty,married to Ade. We have 2 daughters Rowan 7 and Samina 2. I first noticed that Sammi's back didn't look right in November last year. I took her to my GP who took a month to refer her to a specialist who we saw in April. After examining her and x-raying her he told us she has idiomatic infantile scoliosis,and her curve is on the left. He said he couldn't help us as he wasn't sure how to deal with it so he has referred us to the Royal orthapeadic hospital in Birmingham. We have the appointment in October. Her poor back has gotten worse with all the delays. I'm hoping to learn more about this and understand what this all means for my Sammi apart from a funny walk and a twisted back.__________________________________________________

[Guest guest]

Hello Kirsty,

Welcome to CAST!

I agree with Bert 100%. Time is critical.

Please go to the "Files" section of this group, and download Dr. Min H. Mehtas article titled "Growth as a corrective force in the early treatment of progressive infantile scoliosis". Please read for a better understanding of progressive infantile scoliosis. I would also recommend that when you contact the ARISE Scoliosis Research Trust, to request a video called "A New Direction".

Also, read www.infantilescoliosis.org in its entirety when you get a chance.

You are on the right track! Please let us know how we can help.

Sincerely,

HRH

()

Hello i'm new here

Hi i'm Kirsty,married to Ade. We have 2 daughters Rowan 7 and Samina 2. I first noticed that Sammi's back didn't look right in November last year. I took her to my GP who took a month to refer her to a specialist who we saw in April. After examining her and x-raying her he told us she has idiomatic infantile scoliosis,and her curve is on the left. He said he couldn't help us as he wasn't sure how to deal with it so he has referred us to the Royal orthapeadic hospital in Birmingham. We have the appointment in October. Her poor back has gotten worse with all the delays. I'm hoping to learn more about this and understand what this all means for my Sammi apart from a funny walk and a twisted back.

[Guest guest]

Welcome to the group Kristy;

Where do you live have you looked into going to one of

the Shriners Hospital?

Have you read any of the stories of some of our little

angels on the group if not take a look and if you have

more questions everyonr here is very kind and we try

to help each other out.

good luck ,

Bridgette s mom

--- battytart1975 <gadget.themorrigan@...>

wrote:

> Hi i'm Kirsty,married to Ade. We have 2 daughters

> Rowan 7 and Samina

> 2. I first noticed that Sammi's back didn't look

> right in November

> last year. I took her to my GP who took a month to

> refer her to a

> specialist who we saw in April. After examining her

> and x-raying her

> he told us she has idiomatic infantile scoliosis,and

> her curve is on

> the left. He said he couldn't help us as he wasn't

> sure how to deal

> with it so he has referred us to the Royal

> orthapeadic hospital in

> Birmingham. We have the appointment in October. Her

> poor back has

> gotten worse with all the delays. I'm hoping to

> learn more about this

> and understand what this all means for my Sammi

> apart from a funny

> walk and a twisted back.

>

>

>

>

>

>

[Guest guest]

He said sometimes the Enbrel stops

> working and we need to add the MTX with it has anyone else had this

> happen it seemed like the Enbrel was great before this flare I am also

> unable to take any NSAIDS because of stomach problems caused by them

> so I am only taking Enbrel and prednisone right now any input or

> advice would be helpful thank you LINDA

Enbrel works for me like a miracle for 3 yrs.... complete remission.

Then it sort of crept back to not working much. I can't tolerate mtx

or pred. OR nsaid's... so it's enbrel & narcotics for me right now.

-Marietta

[Guest guest]

...I'm glad you ventured out of Lurkdome and joined us. Welcome

to the group. I'm on Enbrel (on a break due to an infection right now

and can't wait to get back on it as it worked a miracle for me...I

could barely walk and now I feel great...almost!). There are many on

here who do Methotrexate and Enbrel combo. I have a genetic disorder

that can effect my liver so my Rhuemy is not going to do MTX unless I

absolutely have to. Hope you find a mix that works for you. Hang in

there.... -Betz

[Guest guest]

In a message dated 31/08/2006 13:02:58 GMT Daylight Time,

rahrahbrick@... writes:

Hi I'm not sure where to start I guess I have been guilty of lurking

for a few weeks reading lots of postings

Hi ,

It's good to hear from you. I'm sorry the MTX was making you ill. You never

know the lesser dose might not have the same effect. I am on that and Enbrel.

When I was on the MTX it didn't make me feel sick until they added Ciclosporin

but I wasn't on that for too long thankfully. The MTX didn't really help me on

its own but since adding Enbrel. There has been a slow but definite

improvement.

Some people are able to stop the MTX eventually while on the Enbrel so It

could work for you on its own.

Good luck with it whatever you end up doing.

Take care,

[Guest guest]

No problems... I have been mia lately myself... First the floods here, then not

feeling to hot... We all have our times... Glad you have made it back...

Love and Peace Always

Shaun and Barb

[Guest guest]

Hi ,  I am new to this group too and haven't gotten around to a real

intro letter, but I just have to ask:  What is stage 2 RA?  Can you list the

different stages?  (I have had FM for 16 yrs and RA for 1 yr.--probably had it,

but it wasn't dx'd).  Lately I feel worse and I am alarmed to see physical

changes in my hands in only a few weeks.  My rheumie has me on Plaquenil and

Cymbalta but is talking about Methotraxate if my tests show any increase.  I

think I am at 1:42 (which I don't really quite understand if that is good or bad

in relation to RA).  I haven't seen anything about " stages. "   Any info will be

most appreciated.

in East Texas

.. . .  My RA is considered stage 2. Whatever label they put on it I know it

hurts in more ways than 1! Anyways... thought i'd say hi.

[Guest guest]

I am not sure is this is what is called " stages " but, from the RA Warrior

website:

The first course of Rheumatoid Arthritis

The first course of Rheumatoid Arthritis is pretty simple to understand. You get

symptoms of Rheumatoid Arthritis and then the RA goes away within six months.

The symptoms of pain and stiffness of RA do not lead to permanent damage.

Neither the cause of the disease nor its disappearance can be fully explained

medically. Only 5 to 10% of all those diagnosed with a type of Rheumatoid

Arthritis are in this category.

The second course of Rheumatid Arthritis

The second course of Rheumatoid Arthritis is more common – typical of about 15%

of RA patients. The symptoms of RA come and go periodically. The peaks are

commonly called flares. Periods between the flares (called remissions) seem more

like life before RA. It becomes possible to exercise or do things that people

who are in the midst of Rheumatoid Arthritis anguish cannot do. However, it is

completely impossible to predict when the RA symptoms will return.

The third course of Rheumatoid Arthritis

The third course of Rheumatoid Arthritis is the most common. This pattern is

very similar to pattern number 2. The same pattern is seen with flares and

remissions alternating. The difference is the damage which occurs because there

is always some inflammation, even during the lulls. And the flares tend to

worsen over the years.

About 75-80% of RA-ers will never have a complete remission. The third and

fourth groups make up that number. Group three is the larger one.

The fourth course of Rheumatoid Arthritis

Finally, the fourth course of Rheumatoid Arthritis is one in which there are not

remissions. The disease only progresses. There is only flare. Or maybe there are

no flares. Depends upon your viewpoint, I guess.

Janice in GA

>

> Hi ,  I am new to this group too and haven't gotten around to a real

> intro letter, but I just have to ask:  What is stage 2 RA?  Can you list the

> different stages?  (I have had FM for 16 yrs and RA for 1 yr.--probably had

it,

> but it wasn't dx'd).  Lately I feel worse and I am alarmed to see physical

> changes in my hands in only a few weeks.  My rheumie has me on Plaquenil and

> Cymbalta but is talking about Methotraxate if my tests show any increase.  I

> think I am at 1:42 (which I don't really quite understand if that is good or

bad

> in relation to RA).  I haven't seen anything about " stages. "   Any info will

be

> most appreciated.

>

> in East Texas

>

>

>

> . . .  My RA is considered stage 2. Whatever label they put on it I know it

> hurts in more ways than 1! Anyways... thought i'd say hi.

>

>

>

>

>

>

>

>

[Guest guest]

,

Sorry it took me so long to answer. I posted on your question Sat night but it

didn't go thru. My rhuematologist is the one who said stage 2. He said that

basically it means moderate bordering on severe. I I have not seen the term used

anywhere else. My hands and feet show the damage that has been done. My pain is

not easily managed. My white blood cell count is rising everytime I have blood

work. I took methotrexate prednisone for 5 year. Worked good first 3. Then I

started having stomach issues. Oh yeah mobic also. Then I took enbrel. It worked

good but I couldn't afford it. Then back to pred methotrexate. January os this

year I was diagnosed with bleeding ulcers. I had to go off all meds except

lyrica for a mobth. Then we started humira. So far it is working ok. Again sorry

it took me awhile to get back to you.

[Guest guest]

I typed a response earlier and it didn't go thru. I apologize in advance

if I miss anything you asked. Thanks. We just gotta take it a day at a time and

keep smiling. It confuses everyone

Betty I asked the same thing. In my opinion terminal is not the best way to

describe arthritis. It is scary enough as is.

Hope everyone has a good evening. Thank you all

[Guest guest]

I am not a doc either, just a suffering lady. I had heard the stages are based

on the likelhood of remission. I am stage 3, or likely to never go in to

remission. My doc said that if he can get a patient in to remission within 2

years it is likely it will be well controlled for a significant period of time.

I have had a full flare situation for 3 years and only this year is it becoming

bearable. It is nowhere near remission but it is becoming manageable. Hopefully

it will get even better. Or maybe I am getting used to the pain.

Also I have heard that the stages are also based on actual joint damage, maybe

it is a combination of the lack of remission and joint damage. I have had

minimal damage thus far, thanks to medications, and yet I am still a 3.

Maybe it is arbitrary based on the doctor.

BJ

> > so, i never heard the stages of arthritis. my dr. just says mine is

> > severe. would that be stage three ??  and then , the terminal......

> > does that mean you would die from it ???

> >

> > got me a little worried about this....  i guess there's really no need

> > to worry tho,  dr. said i would get worse with mine, with my age and

> > all. (69)

> >

> > i just never heard it broke down into stages, but it seems right,

> > everything else is.....

> >

> > Betty

>