Re: (unknown)

[Guest guest]

,

If RSD is caught and treated EARLY there is a chance that it may be put into

remission. There are no guarantees that this will happen, however, with no

treatment there is next to no chance that it will go into remission on its own.

I have known people who received treatment within 6 weeks and were put into

remission and then again I know of a doctor who began receiving treatments 3

days after his injury but it still went full bloom and traveled from his wrist

to his elbow.

I was already under treatment for RSD in my right wrist when I injured my left

ankle. Within 2 months it had spread to both feet and legs.

Dorothy

[Guest guest]

Hello all,

I was one of them that got treated EARLY and it spread so fast. so

you are right when you say that sometimes it can go into remission

but then again there is alot it dont. I new within one week from when

I got hurt it was RSD now I live in so much pain and I have the scs

inplant and pain meds. But with RSD we take it one day at a time.

suzy

>

> ,

> If RSD is caught and treated EARLY there is a chance that it may be

put into remission. There are no guarantees that this will happen,

however, with no treatment there is next to no chance that it will go

into remission on its own. I have known people who received treatment

within 6 weeks and were put into remission and then again I know of a

doctor who began receiving treatments 3 days after his injury but it

still went full bloom and traveled from his wrist to his elbow.

>

> I was already under treatment for RSD in my right wrist when I

injured my left ankle. Within 2 months it had spread to both feet and

legs.

>

> Dorothy

>

>

>

>

[Guest guest]

Hello!

I am so sorry to hear of your horrible plight!!

I can tell you what has worked for me for the past 26 years. If I had a

bump or a sprain....I would literally call my phyiscal therapist before anyone

else. If I go RIGHT into PT for my RSD, you can usually keep it from

spreading. The longer you wait to be treated...with blocks, PT (espeically PT)

the

more you risk having it either spread or being irreversible. I have had

several occassions where I went into remission (for very minor RSD flares) and

for severe RSD I would keep it from spreading with PT. Mind you...the PT is

extremely painful, but extremely needed.

Here are some examples for you, hon.

When I was about 17, I fell and twisted my ankle. I already had RSD...but I

know going right into PT for five days a week instead of my normal three

days, made the difference between it staying where it was and it spreading up

my leg.

When I was about 23, I fell down the steps and broke my ankle...the other

ankle. I already had RSD there also....my Ortho Dr was one who did beleive in

RSD (as there are STILL so many ignorant skeptical doctors even today). He

knew if he casted my leg...the RSD would DEFINATELY spread...so He gave me a

boot....to remove and to only use when walking. I also went into 5 day

PT...the RSD did spread a wee bit...but I think it was from the minor

fracture...since I went into PT immediately, and did not have it immobolized

(which is a

MAJOR NO NO with RSD, it didn't spread much, where if these things were not

done correctly...it would of been all the way up my leg.)

This one needs to be very wordy...sorry...it needs alot of explanation::

Now...this one talks about PREVENTION OF RSD..I was given a femoral

block...for severe RSD of my right knee....after I had surgery on my knee that

I HAD

to have due to a significant tear, the RSD flew into the damned knee. AFter

I was sent home, I STUPIDLY forgot about the block. (Mind you I have had

over 180 blocks....I know how you need to stand...by keeping your knee

bent...the moment you straighten your knee. you will fly to the ground....and

that is

exactly what I did) I fell right on top of my left wrist. It was severely

fractured, displaced and dislocated.

I am fortunate enough to have the most wonderful pain doc in the world.

When I called him to let him know and in my panicked voice...told him of my

fear of it spreading to my wrist even more...he told me that he was working on

the floor and he would meet me in the ER. Here he came in from home to do the

conscious sedation while they put the wrist back into place. He also did a

block to prevent the RSD from getting worse in my arm and wrist.

They did surgery that week, after the swelling had come down enough, and

prior to the surgery, did yet another block to prevent the RSD from spreading

worse from the surgery...which was a plate and 5 screws to keep the bone

aligned. Because of his quick thinking...and the PT (though agonizing as it

was )

kept the RSD from spreading any worse in to the wrist.

NOW, I MUST TELL YOU....NOT EVERYONE WILL BE AS LUCKY AS I HAVE BEEN. I can

attest to this just by my left foot and ankle. It is the worst case of RSD

that I have ever had, witnessed or known about in the past 26 years. I have

had the docs at Hopkins, mayo clinic clevleand clinic and jefferson all

strongly suggest amputation...which is not suggested lightly.

I had been seeling a doctor for nine years who I trusted to do the right

thing by me. He misdiagnosed me....I begged him, pleaded with him to put me

into PT for RSD, but he refused...telling me that it was ligament damage. I

really do beleive that if I had the treatment that I needed early enough...my

ankle and foot would NEVER of been this bad.....but I can't prove it...so I am

stuck with the problem and the doctor...well, I hope and pray that he

listens to his next patient better than he listened to me. I know that he

didn't

mean to hurt me. I know that he is good man...but he really did hurt me.

Everyone's body is different. We all respond to things differently, that is

true...but the one thing that I have come to KNOW as a fact that if you

catch RSD in the VERY early stages, you have a better chance at keeping it in

the

early stages and not the worst stages, where things are hopeless.

I am so sorry that it took them so long to help you out. I can't say for

sure if earlier intervention would of prevented the RSD...but after you had it,

it may very well of stopped it from going into worse stages.

Do you have a pain management doctor now? What does he/she say about this?

What does she/he propose you to do regarding your RSD treatments?

ARe you in PT? Are you able to do any water therapy...this is also a GREAT

therapy for RSD...if you can tolerate it. I have tried so many times in the

past 7 1/2 years...and each and every time I pass out due to the pain.

Bummer, huh?

Do you have a stim..or a pain pump, and if not, are you thinking about

having one implanted? I know these are hard and scary decisions to make...but

you

are not alone....you have the full backing of your group....we are here for

eachother all the time...I know that I have been helped by so many of the

great folks in this group...and I have come to love them and call them friends.

Please know that I am here for you and anyone day or night...I have a cell

phone for the group....you can call me any time...I may not be able to take

your call then...but I promise to call back within 24 hours. If I don't call

back, it is only due to me being in the hospital. You can reach me @

_eyes4Lenny@..._ (mailto:eyes4Lenny@...) or _KGAvi@..._

(mailto:KGAvi@...) or (215) 783-9066

Mike and I own the group. Mike is the founder and owner of this incredible

group of awesome, funny and kind-hearted folks. Mike is a real great man,

and it is a priviledge to call him friend. We have many moderators. They are

true gems to Mike and I. They really help us out so much! Each and every

one has a heart of gold, and I thank them for their loyalty to the group and

their committment to the members.

Gentle hugs to you and all,

Love,

Kathy G.

Co-Owner

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

steps!

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cemailfooterNO62)

[Guest guest]

Hi, Suzy,

Unfortuantely, RSD is like that. It really is a beast.

I was lucky when I was younger and had remission in my left knee and

wrist...this was only due to me going to PT for 5 days a week for several weeks

at a

time.

Not everybody is the same. Dorothy is so right.....sometimes we catch a

break...but sometims not...you can still do everything right...and still wind

up

with horrendous RSD.

I wish you well and hope you are doing ok.

Take care

kathy G.

Co-Owner

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

steps!

(http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De

cemailfooterNO62)

[Guest guest]

I had a very high ris pregnancy and many many ultrasounds. I had more

ultrasounds with ended up getting an emergency c but Josh has apraxia. I

think you were wondering if there could be a connection. Hope this helps.

Charlotte

**************From Wall Street to Main Street and everywhere in between, stay

up-to-date with the latest news. (http://aol.com?ncid=emlcntaolcom00000023)

[Guest guest]

-

type in 'whiplash compensation' into Google - there is a lot of help out there,

and lawyers who claim no win no fee.

Luv -

Sheila

Are there any solicitors/legal people

out there who know if you can claim for aggravated thyroid damage, that is on

top of an existing illness? My insurers are going to claim against the guy who

hit my car for the whiplash injury but I'm going to be very unhappy indeed if this accident has

put back my hypo t recovery....just as I was beginning to get my life back as

well !

[Guest guest]



Just a warning. Be careful with the no win no fee situation. Read your contract with them very carefully. Very often their 'fee' means just that. It does not mean the expenses (disbursements) they have.

If you win they will get their disbursements and expenses from the other side. If they do not win, you do not have to pay their fee, but you may have to pay for their 'out of pocket' expenses and depending on how long the case is, how much it was contested, whether expert witnesses need to be called (and their expenses and fees paid) etc.

Does the car insurance cover legal fees - that might be the best way to go.

Lilian

[Guest guest]

Where is Sen. Stone from?

Chante, if you are from MD I am as well. I'd be happy to share my story. I

went to DC about 4 yrs. ago armed with lots of research, papers, info and books

by Dr. Shoemaker. Met with an aide to Congressman Ruppersberger but never

heard anything from them.

Sue

>

Hello All,

This is the feed back from Senator Stone's wife.

We listened to the hearing in our office. The committee seemed to be quite

supportive of this legislation

[Guest guest]

Thanks, I'll make sure to get in contact with him!!

I got sick from a moldy school (private) in MD that is still open.

Thanks,

Sue

>>

Senator Stone is from land and the more letters and stories he hears the

better. Here is his contact information and you can call the number to

verify thanks.

Senate Judicial Proceeding Committee, 11 Bladen Street, 2 West Bldg.,

plis, MD 21401.

JoAnne,

Legislative Assistant 410-841-3587

[Guest guest]

Senator Stone is from land and the more letters and stories he hears the

better. Here is his contact information and you can call the number to verify

thanks.

Senate Judicial Proceeding Committee, 11 Bladen Street, 2 West Bldg.,

plis, MD 21401.

 

Please let me know that you received this email.  Thanks, JoAnne, Legislative

Assistant   410-841-3587

________________________________

From: " ssr3351@... " <ssr3351@...>

Subject: Re: [] (unknown)

Where is Sen. Stone from?

Chante, if you are from MD I am as well. I'd be happy to share my story.

[Guest guest]

Hi Patti,

 

Dr. Cortes is my dr at MDACC.  It is an awesome place and has kept me on the

right drug to keep me in chronic phase.  I am now in my 4th clinical trial,

HHT.  But waiting for the ariad phase II to open up.  My next appt is next

Friday and every 28 days for now.  I will keep checking for your updates to see

if you make it to Mdacc. Or feel free to email me privately if you have any

questions.  There are more patients in this group that go to MDACC.  It's a

popular cancer center.

 

God Bless,

Jackie Schneider

From: PATRICE SIMBULAN <psimbulan@...>

Subject: [ ] (unknown)

Date: Sunday, January 25, 2009, 9:02 PM

I am taking Sprycel and fatigue is my biggest issue.  I cut my dose to 50 mg

daily and I still have terrible fatigue.  I just have to take vacations from the

drug from time to time to try to feel better but as soon as I go back to taking

my 50 mg daily it all returns.  My onc is hesitant to reduce my dose anymore. 

The Sprycel has kept me PCRU since 10/07 so I guess I shouldn't complain but it

would great to have a better QOL.  My onc wants me to go to MD for a

consult with Dr. Cortes to see what he says.  I may do that this Spring.  In the

meantime I just try to cope.

Patti S.

[Guest guest]

You seem to have got through OK now Louise

Lilian

(unknown)

Hi Sheila. I have been trying to send email, but it wont let me in, It wont ven let me rejoin, HELPPPPPPPPPP Love Louise Coase

[Guest guest]

Hi Louise,

This one arrived

OK.

Subject:

(unknown)

Hi Sheila. I have been trying to

send email, but it wont let me in, It wont ven let me rejoin, HELPPPPPPPPPP

Love Louise Coase.

E-mail message

checked by Spyware Doctor (6.0.0.386)

Database version:

5.11660

http://www.pctools.com/spyware-doctor-antivirus/

__._,_.___

[Guest guest]

No

idea why it won't let you in Louise - however, I see that you have posted today.

Let me know if you have written anything that hasn't come through to the

message board. If this turns out to be a problem, the easiest thing to do is to

simply reregister and then I will remove your old registration details. thyroid treatment

Any

problems just shout.

Luv -

Sheila

Hi Sheila. I have been trying to send email,

but it wont let me in, It wont ven let me rejoin, HELPPPPPPPPPP Love Louise

Coase.

J Coase

01223

870575 Office

07889

654142 Mobile

2a

Queens Close

Harston

Cambridge

CB2

5QL

E-mail

message checked by Spyware Doctor (6.0.0.386)

Database

version: 5.11660

http://www.pctools.com/spyware-doctor-antivirus/

[Guest guest]

your welcome!

________________________________

From: " ssr3351@... " <ssr3351@...>

Subject: Re: [] (unknown)

Thanks, I'll make sure to get in contact with him!!

I got sick from a moldy school (private) in MD that is still open.

Thanks,

Sue

[Guest guest]

At 02:11 AM 1/21/2009, you wrote:

>Thank you Sheri, you continue to be a light and a comfort while we

>gain a handle on the fear.

thank you and you are welcome

Sheri

>

--------------------------------------------------------

Sheri Nakken, R.N., MA, Hahnemannian Homeopath

Vaccination Information & Choice Network, Nevada City CA & Wales UK

Vaccines - http://www.wellwithin1.com/vaccine.htm Vaccine Dangers &

Childhood Disease & Homeopathy Email classes start February 18 & 19

[Guest guest]

:

 

I have been given several different protocols for the flushing of the pic lines:

 

Option 1: Flush once a day with 20cc sodium chloride in each line whether you

use the lines or not.

Option 2: Flush the line after each infusion treatment and flush the one you

don't use with 20cc sodium chloride as well (I have dual lines)

Option 3: Also flush with 1cc - 5cc herparin

Option 4: Do not flush with ANY herparin as it is a dangerous blood thinner.

 

Because the different clinics have different tubes and needles, I am now doing

my own thing, which is dependent on the supplies I was given by the generous

nurse---something my former (fired) oncologist yanked away from me. She was

pissed off I was doing these alternative therapies. I was told by a receptionist

who answers phones at the R.N.'s clinic who did the pic line--- " Some mainstream

docs will try to sabotage what you are doing because they are very angry with

alternative approaches. " It certainly rang true when the oncologist left me in a

position to not be able to clear and flush my lines. It takes a prescription to

get these supplies. She left me in a very dangerous position. I am floored that

she would do this. I even told the infusion clinic nurse that I would NOT

self-inject if this is what it would take to get the supplies; instead, the

option of getting supplies was yanked away from me. I am still blown away. All I

am trying to do is

explore options of saving my life from a not-to-good prognosis of inoperable

lung cancer. It is beyond me what goes on in people's heads, but I am moving on

and now have a fabulous new " Dream Team, " comprised of a Doctor of

Ostepathy/oncologist, an anthroposophic medical doctor and a naturopath. But I

will only being doing the Vitamin C, Ozone and perhaps mistletoe thru my lines.

Sodium Bi-carbonate will not be a choice per Golden and Jim's warnings.

 

From: son <turmeric4@...>

Subject: [ ] (unknown)

Date: Monday, February 2, 2009, 9:49 AM

,

" The problem is that

the lines have to be flushed everyday. "

I don't know where they came up with that. The pic lines need

to be flushed every week, not day. I had a midline put in my

arm, and on the week I didn't have chemo I had to come in and

have it flushed.

[Guest guest]

Hi Dawn,

First of all, hats off to you for stepping up to care for your sister. The

questions/emotions you describe are exactly what most of us feel and fear -- how

to do all of what we feel compelled to do for our loved ones, whilst maintaining

our own lives, marriages/relationships, physical and emotional health, etc?

Yes, there are MANY rewards that we receive from our special children or sibs.

But it's tough, too.

Absolutely, any housing/caregiving arrangements would have to be agreed to and

written down -- like in my hubbie's law business, where he creates 'partnership

agreements' everyday for business people. It would have to be a contract.

Thanks for sharing your thoughts.

L.

(unknown)

Hi,

I think of the housing idea, and my first thought is: " who is responsible? " A

perfect example could be: my sister gets an overdose of seizure medication

(toxic) and has to be taken to the hospital. Someone would have to provide

answers and preventative solutions for this to not happen again.

What protection do the caregivers have against other caregivers? Would people

be sued personally? What if one caregiver doesn't hold up their end of the

deal? If I were to get involved with any living situation with any other family,

I would do it legally to protect everyone involved. My mom always said that I

asked to many questions. Ha!

Caring for someone is not easy at all. It is the hardest part of my life to

sit down for a split second and ask myself " what is my life? " . So quickly the

" my life " part has been taken out of the equation completely. Yes I would like

to sit down alone for a night without the millions of thoughts " did I order all

her medicine? " or " Does she realize what I give up in my life for her (my

little sister)? " or " Will she ever understand or learn! " or " Is this the right

thing! "

I have to stay positive for both of us and completely realistic and covering

all grounds before we step (to protect both of us).

Good night

[Guest guest]

Why do you have to flush your picc line daily? I only flushed mine 1x a week

with saline and it worked fine.

~Amber

-- Re: [ ] (unknown)

:

I have been given several different protocols for the flushing of the pic

lines:

Option 1: Flush once a day with 20cc sodium chloride in each line whether

you use the lines or not.

Option 2: Flush the line after each infusion treatment and flush the one you

don't use with 20cc sodium chloride as well (I have dual lines)

Option 3: Also flush with 1cc - 5cc herparin

Option 4: Do not flush with ANY herparin as it is a dangerous blood thinner.

[Guest guest]

Dawn,

I don't know how Dr. G feels about other interventions. I know he is in

favor of speech therapy. He just does not like ABA.

Your counsel it good. My instincts tell me we are on the right track with

our current home program. Sometimes all the differing opinions out there

make it difficult to have confidence in decisions, though.

Again, thank you for your insights.

Martha

From: [mailto: ] On Behalf Of Dawn

Dolan

Sent: Friday, January 30, 2009 1:09 PM

Subject: [sPAM] (unknown)

Martha,

Is Dr. G opposed to all other interventions or just ABA? I feel if you had

a stroke, there would be a medical component to address your recovery as

well as other components needed to train and retrain your brain. I don't

see how it could hurt unless overwheling him was the concern. I'm not sure

how it could damage him?? Let your son be the barometer as to how much he

can take. I think ABA can be good at helping your son properly execute the

steps needed in potty training or other self help and coping skills.

Someone is going to have to teach him this stuff and it seems helpful to

have a trained professional spearhead the way in which to go about it and

get the ball rolling for you.

My son is currently doing in-home ABA which started this year at age 5. He

does 10 hours. My concern was that it would be to rigid and formulaic and

not address the actual areas where he needs help. So far, it's fine. We

never really did all the drilling, but my son did not need that so much. He

needs work on social and coping and some processing which they do through

playbased activities. There is no perfect solution or quick fixes, but

sometimes you get a good instructor that clicks with your child's

personality and it just works. I hope that is the case for you! Don't be

hard on yourself. You try it, and if it doesn't feel right, move on. But I

feel time is of the essence. Early intervention is key.

dawn

[Guest guest]

Push the seeds down. Get them submerged in the water. Even if they don't

all submerge, they will probably still sprout. After the soak, they will

be down against the others and then they will be ok.

ew

(unknown)

Date: Thu, 12 Feb 2009 18:13:27 -0000

Don't know what's happening but it won't let me post a subject for

this question.

Re: Seeds floating to the top while I'm soaking them.

I just got these beautiful radish sprout seeds. I put them in the

water in my mason jar to soak overnight. I noticed that a LOT OF

SEEDS

are floating on the top.

Now when I soak the broccoli seeds, the fenugreek and all my other

seeds, well, there are SOME seeds that float to the top. I thought

that I should just pick them out, (or collect them with a spoon) and

toss them.

For some reason, I believe that when you are soaking seeds and they

float, that means they will not sprout. Am I incorrect in this

assumption?

But the radish seeds?. There are quite a bit floating. I just swirl

the water and some of them sink.

What does this all mean?

Thanks much

Melody

--

Be Yourself @ mail.com!

Choose From 200+ Email Addresses

Get a Free Account at www.mail.com

[Guest guest]

(unknown)

Date: Thu, 12 Feb 2009 18:13:27 -0000

Don't know what's happening but it won't let me post a subject for

this question.

Re: Seeds floating to the top while I'm soaking them.

I just got these beautiful radish sprout seeds. I put them in the

water in my mason jar to soak overnight. I noticed that a LOT OF

SEEDS

are floating on the top.

Now when I soak the broccoli seeds, the fenugreek and all my other

seeds, well, there are SOME seeds that float to the top. I thought

that I should just pick them out, (or collect them with a spoon) and

toss them.

For some reason, I believe that when you are soaking seeds and they

float, that means they will not sprout. Am I incorrect in this

assumption?

But the radish seeds?. There are quite a bit floating. I just swirl

the water and some of them sink.

What does this all mean?

Thanks much

Melody

--

Be Yourself @ mail.com!

Choose From 200+ Email Addresses

Get a Free Account at www.mail.com

[Guest guest]

I am def wishing you the best of luck. We all know how hard those

surgeries are on your body. Especially, the first two-three days. I will

be thinking about you and praying for you!!! Stay Strong!!! April

(unknown)

Date: Thu, 12 Feb 2009 21:13:17 -0000

I will be having my 3rd lumbar surgery on the 17th in Albany NY .

will be having another fusion along with some scar tissue removal .

--

Email2me.... The email service that cares. It is FREE.

http://www.email2me.com

[Guest guest]

Hi KD,

I came here for RA support. What I've gotten is so much more. There is

much knowledge on this list, many good people willing to listen and share their

own experiences, about anything that might help you. There's lots of humor

to give you that smile when you need it, etc. I believe many of us on here

have more than just RA. I just got dx'd with Fibro too. To me, it's just

like, ok, add another one. Anyway, it covers so much more. RA can make you

crazy sometimes....this list will keep you sane. Well, maybe, depends on who

is

writing and when...tee hee.

Heidi in very windy Mass. I could lose power tonight and be scared! eek!

_

In a message dated 2/12/2009 10:14:21 P.M. Eastern Standard Time,

danielskathy@... writes:

RA? SLE? Other?

Interesting, I do not have a box to add a subject line. ?

I was wondering if most members are here for RA support or SLE support

or other afflictions?

KD

**************The year's hottest artists on the red carpet at the Grammy

Awards. AOL Music takes you there.

(http://music.aol.com/grammys?ncid=emlcntusmusi00000004)

[Guest guest]

Hi there,

I haven't had my revision surgery yet, but am scheduled for June 3rd with Dr.Boachie. I wish you well and hope it doesn't take you too long to get your strength back in your legs. what did your surgery consist of? I have a Harrington Rod that he'll be removing...and then re-doing my fusion. When you're up to it, I'd like to hear how you're doing. You will be in my thoughts...

lauren

From: jdh3652 <jdh3652@...> Sent: Thursday, February 12, 2009 2:36:31 PMSubject: [ ] (unknown)

I had surgery with Dr. Boachie on Jan. 21st. I stayed in the Hospital for Special surgery for about 8 days and then went to an acute rehab facility nearby. I had 3 hours of PT every day except on weekends. I had a lot of symptoms that came and went but the lasting one that is bothering me the most is the weakness I have in my legs. I have to wear a knee brace and use a walker to get around as well as the back brace that Dr. Boachie prescribed. Post surgery both my legs just buckled when I tried to stand. I am now 3 weeks out and I can stand w/o the brace as long as I can hold on to the walker but I don't dare try to walk w/o the brace as I am afraid my knee will collapse again. Dr. Boachie said it could take up to 4 months for the strength in my legs to fully return. Did anyone have a similar experience post-op? Right now I have to have help in order to stand and walk cause I can't put the knee brace on by

myself because I am not allowed to bend. My husband has to help me put the knee brace on, then the back brace and then I have to use the walker to get around the house. I can't do stairs yet either. I am very happy with the way my back came out-I am standing very straight with no trace of the flatback I had before. I am worried about the strength in my legs returning but am trying to be patient. Anyone else out there have leg weakness post-op?