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Howdy from Texas! I was implanted last July and second implant in

Feb this year. I was initially going to do the second one in July

while work was light and and kids gone to camp, but thought why not

earlier? It was easier second time around, I guess because I knew

what to expect and my brain was still " elastic " and could adjust to

the new sounds.

The deal clincher was when I took off my first implant and tried to

hear with just ONE hearing aid, I got little or no benefit. I

thought - I have nothing to lose! And I knew I had coverage for the

second implant, so away I went!

But I will tell you last summer, I thought I made a mistake first

week post activation - hated it. But I remembered the experience of

others shared here to stick with it and I did to much delight.

Best wishes, Neely, Dallas Texas

>

> Hello everyone

> Just wanting to introduce myself. I am new to the group. I had my

> right ear CI (Nucleus Freedom) implantation on December 31 and

> activation on January 29, 2008. I had my surgery at UMass

Worcester,

> MA with Dr. Lee, an excellent doctor. My audiologist is

also

> great with the mappings. I had no problem getting my insurance to

> approve the surgery and my share was very very reasonable at

$75.00. I

> am considering the possiblity of having my left ear also

implanted. I

> am hoping this group will provide me with some pros and cons

related to

> having bilateral implantation.

> Interesting how it is taking me some time to get adjusted to the

CI. I

> am finding it a challenge to get adjusted to hearing sounds again.

I

> am now able to hear and understand most of sounds on the TV (I

still

> use caption also). I am able to follow one to one conversation and

> small group settings with little or no difficulty.

> I lost my hearing 40 years ago, due to family hereditary. I am the

3rd

> family member to have the CI. People ask me why I waited so long

to

> have the CI. First, as a VR counselor, I have seen earlier CI's

not

> effective for many people that I have had as consumers and

problems

> with the CI so I hesitated in having the surgery. I also am very

much

> aware of the issues within the Deaf Community related to CI

surgery.

> However, in the end, it was my decision to go forward with the

surgery.

> I look forward to the feedback and information from everyone.

>

> Betty

>

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Guest guest

Thanks for the input. Interesting to see your comment that after

your first CI, you thought you had made a mistake. That was exactly

my same thoughts, and told my family of this, but after I had several

mappings, those thoughts disappeared.

Betty on the Cape in Massachusetts

> >

> > Hello everyone

> > Just wanting to introduce myself. I am new to the group. I had

my

> > right ear CI (Nucleus Freedom) implantation on December 31 and

> > activation on January 29, 2008. I had my surgery at UMass

> Worcester,

> > MA with Dr. Lee, an excellent doctor. My audiologist is

> also

> > great with the mappings. I had no problem getting my insurance

to

> > approve the surgery and my share was very very reasonable at

> $75.00. I

> > am considering the possiblity of having my left ear also

> implanted. I

> > am hoping this group will provide me with some pros and cons

> related to

> > having bilateral implantation.

> > Interesting how it is taking me some time to get adjusted to the

> CI. I

> > am finding it a challenge to get adjusted to hearing sounds

again.

> I

> > am now able to hear and understand most of sounds on the TV (I

> still

> > use caption also). I am able to follow one to one conversation

and

> > small group settings with little or no difficulty.

> > I lost my hearing 40 years ago, due to family hereditary. I am

the

> 3rd

> > family member to have the CI. People ask me why I waited so long

> to

> > have the CI. First, as a VR counselor, I have seen earlier CI's

> not

> > effective for many people that I have had as consumers and

> problems

> > with the CI so I hesitated in having the surgery. I also am very

> much

> > aware of the issues within the Deaf Community related to CI

> surgery.

> > However, in the end, it was my decision to go forward with the

> surgery.

> > I look forward to the feedback and information from everyone.

> >

> > Betty

> >

>

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Guest guest

Just wondering about the rechargable batteries, will the xray machine

damage those?

Betty

> >

> > Hi Betty,

> >

> > Welcome to CI Hear. The group has been unusually quiet lately so

I

> > hope you liven it up a little. <smile> I know Dr Lee is a great

> > surgeon and UMass is a great place to go for your follow up. It's

> also

> > exciting to read that you are considering the other ear. It's

> great to

> > hear with the CI and I'm excited for you.

> >

> > Alice

> > http://www..com

> >

>

>

>

>

>

>

> Irv in Ca.

>

> Implanted(Freedom) - Sept. 13, 2005

> Activated - Oct. 7, 2005

>

>

>

>

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Guest guest

Sorry, Betty, but when I got my CI in 2005 they didn't have rechargeables. I use

only disposables, and the XRay machine had no effect on them. Thus, I think the

same would hold true for rechargeables, but cannot speak from personal

experience.

bjean1944 <bjlfalm@...> wrote:

Just wondering about the rechargable batteries, will the xray machine

damage those?

Betty

> >

> > Hi Betty,

> >

> > Welcome to CI Hear. The group has been unusually quiet lately so

I

> > hope you liven it up a little. <smile> I know Dr Lee is a great

> > surgeon and UMass is a great place to go for your follow up. It's

> also

> > exciting to read that you are considering the other ear. It's

> great to

> > hear with the CI and I'm excited for you.

> >

> > Alice

> > http://www..com

> >

>

>

>

>

>

>

> Irv in Ca.

>

> Implanted(Freedom) - Sept. 13, 2005

> Activated - Oct. 7, 2005

>

>

>

>

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Guest guest

Hi Anne,

Welcome to the list. You show several of the classic signs of

thyroid disease- the eyebrows as well as the overwhelming tiredness and

weight gain. Has any of you docs thought to do a TSH? This can be

inconclusive- it is perfectly possible to have thyroid disease and have a

'normal'TSH. I'm sure Dr. S will b able to help if you can get to see him.

The candida can also produce similar symptoms so you are right to be

concerned about that.

Subject: New to the group

Hello everyone

I've just joined and have been trawling through the files. I have a

very high score for the hypo checklist but also for the candida (had

several courses antibiotics for bladder tumour several years ago). I

have been on an anti-candida diet before and felt much better generally

but many of my symptoms didn't go - like the bi monthly fatigue,

hair/eyebrow loss.

My main 'disabling' symptom is fatigue in varying degrees. I struggle

every day, waking up fatigued and sometimes having to lay down again.

Often my breathing is affected and I get a 'shaky tiredness' which only

gets worse until I sleep, sometimes for hours. at it's worst I am

unable to wake up or move but can hear and recall conversations/TV progs

etc. When like this - even when I awake - my right eyelids droops, my

visions blurs/doubles and I cannot join in a conversation. If my

(right) eyebrow has regrown I lose it again when like this. When it's

really severe I can lose both eyebrows. My muscles go weak so that I am

unable to walk. I 'age' twenty years , until it passes and then I start

to look better. I have been like this for 26 years with no help at all.

I lost all my body hair way back then. I have no idea what I have been

tested for but am hoping to see Dr g. S. and have asked my neuro to

refer me.

MS was suspected but ruled out but apart from that I have not been told

anything - my treatment has been appalling really. I have lost feeling

in several places and having buring sensations, am gaining weight (up

to 14 stone now despite good 'ol slimming world) and have a low body

temp mornings and even lower in the afternoon when I crash. I will be

icy cold even in the hotest weather until around 5 - 7pm when all of a

sudden I'll warm up.

I have terrifying choking fits and so stiff in the mornings that I

sometimes cannot get up unaided.

I'm rather worried in case my neuro refuses to refer me and not sure

what other options I may have so any ideas would be welcome (the answers

maybe in the 'files' so I'll carry on reading - trouble is I forget so

much lol). I've lost all my adult life to this fatigue and am ready now

to do anything !

thanks for reading

Anne

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

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing

medication.

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Guest guest

Betty,

X Ray machines and scanners should have no effect on any sort of

battery

> > >

> > > Hi Betty,

> > >

> > > Welcome to CI Hear. The group has been unusually quiet lately

so

> I

> > > hope you liven it up a little. <smile> I know Dr Lee is a great

> > > surgeon and UMass is a great place to go for your follow up.

It's

> > also

> > > exciting to read that you are considering the other ear. It's

> > great to

> > > hear with the CI and I'm excited for you.

> > >

> > > Alice

> > > http://www..com

> > >

> >

> >

> >

> >

> >

> >

> > Irv in Ca.

> >

> > Implanted(Freedom) - Sept. 13, 2005

> > Activated - Oct. 7, 2005

> >

> >

> >

> >

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Guest guest

I'm going down April 16th. Please post how your surgery and recovery

are going. I'm not telling my coworkers or family members (only my

son and daughter) because I know they would all give me crap about

it. For once I'm doing something just for me!

Debi in Portland

> Hello. My name is Angel. I am new to the group. Actually,

Today is

> my first day. I will be getting banded by Dr. Aceves on April 1st.

I

> am very excited and kinda scared too. Any one have advice or

> conforting words for me? Some of my family is giving me crap

because

> I'm having this done in Mexico.

>

>

>

>

>

>

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

> Be a better friend, newshound, and know-it-all with Mobile.

Try it now.

>

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  • 2 weeks later...
Guest guest

Welcome to the group, Moon. Keep on shining :-)

If you have any questions, ask away. There are plenty of Cochlear

Freedom users here.

Ted F.

>

> Hi, I'm hard of hearing with Auditory Neuropathy (AN), I had a CI

early

> this January, the Nucleus Freedom from Cochlear. I'm here with hope

to

> learn and share experiences with CI users. Looking forward

to " hearing "

> from you all.

>

> Moon in VA

>

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  • 1 month later...
Guest guest

Are you using Celtic sea salt? For me, the detox symptoms went away

significantly when I increased to 50mg iodoral. I started out with 12.5 and

increased to 25. Most likely, you are experiencing bromide detox.

Here are a few links that might help:

http://www.breastcancerchoices.org/bromidedetoxsymptomsandstrategies.html

And for helping with detox:

Do a salt load http://www.breastcancerchoices.org/drshevin.html

Increase Vit C - 3,000 - 4,000 mgs / day

Increase Mg

Do liver friendly things like adding lemon to water or taking a

liver cleanser like Metagenics Ultra Clear Plus

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

> Hello all,

> I started Lugol's one drop in a glass of water. Had upset tummy, light

> headness, off balance and fatigue. Next day used orange juice instead

> of water. Everthing better but fatigue. Went to two drops in OJ but

> still the fatigue. Happens within 30 minutes of take Lugol's and last

> all day. I did this for 9 days. I stopped taking Iodine and the

> fatigue stopped. Any idea's?

> Thyroidless, 3 grains Armour, Mega Stress for adrenals, b complex, seal

> salt, vit c.

> Diane

>

>

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Yes, I use Celtic Sea Salt. I have read about the bromide detox. What symptoms did you have? Do you really think this is a detox issue?

Diane

Re: New to the Group

Are you using Celtic sea salt? For me, the detox symptoms went away significantly when I increased to 50mg iodoral. I started out with 12.5 and increased to 25. Most likely, you are experiencing bromide detox.Here are a few links that might help:http://www.breastca ncerchoices. org/bromidedetox symptomsandstrat egies.htmlAnd for helping with detox:Do a salt load http://www.breastca ncerchoices. org/drshevin. htmlIncrease Vit C - 3,000 - 4,000 mgs / dayIncrease MgDo liver friendly things like adding lemon to water or taking a liver cleanser like Metagenics Ultra Clear Plus----- Original Message ----- > Hello all,> I started Lugol's one drop in a glass of water.

Had upset tummy, light> headness, off balance and fatigue. Next day used orange juice instead> of water. Everthing better but fatigue. Went to two drops in OJ but> still the fatigue. Happens within 30 minutes of take Lugol's and last> all day. I did this for 9 days. I stopped taking Iodine and the> fatigue stopped. Any idea's?> Thyroidless, 3 grains Armour, Mega Stress for adrenals, b complex, seal> salt, vit c.> Diane>>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

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I had fatigue, intense headaches (I rarely have a headache) and a few other symptoms on the list. Yes, I am sure it was bromide detox issues. If they come back, I take a 2 day break from iodine to let it pass through my kidneys and then I'm fine.

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

Yes, I use Celtic Sea Salt. I have read about the bromide detox. What symptoms did you have? Do you really think this is a detox issue?

Diane

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Guest guest

you are undertreated on Armour and certainly need more iodine.

IMHO

Gracia

Hello all,I started Lugol's one drop in a glass of water. Had upset tummy, light headness, off balance and fatigue. Next day used orange juice instead of water. Everthing better but fatigue. Went to two drops in OJ but still the fatigue. Happens within 30 minutes of take Lugol's and last all day. I did this for 9 days. I stopped taking Iodine and the fatigue stopped. Any idea's?Thyroidless, 3 grains Armour, Mega Stress for adrenals, b complex, seal salt, vit c.Diane

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.10/1421 - Release Date: 5/7/2008 5:23 PM

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Guest guest

,

That is good to know. For some reason I thought if you took a break

during iodine use the bromide that was " stirred up " would settle so

to speak somewhere else. I read so many things and have such

horrible brain fog, I have difficulty remembering/recalling or

sometimes just making sense of things. Dr. Brownstein told my friend

Monday that it is okay to play around with iodine taking more or less

as it feels good, but I didn't now that stopping for a couple days

was okay. Had I know that I would have quit for a couple days last

week when it made me really sick. Thanks again,

>

> I had fatigue, intense headaches (I rarely have a headache) and a

few other symptoms on the list. Yes, I am sure it was bromide detox

issues. If they come back, I take a 2 day break from iodine to let

it pass through my kidneys and then I'm fine.

>

>

> ----- Original Message -----

>

>

> Yes, I use Celtic Sea Salt. I have read about the bromide

detox. What symptoms did you have? Do you really think this is a

detox issue?

>

> Diane

>

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Guest guest

I do it all the time when I need to. Today I woke up with a raging headache

which is my worst bromide symptom, so I didn't take any today.

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

> ,

> That is good to know. For some reason I thought if you took a break

> during iodine use the bromide that was " stirred up " would settle so

> to speak somewhere else. I read so many things and have such

> horrible brain fog, I have difficulty remembering/recalling or

> sometimes just making sense of things. Dr. Brownstein told my friend

> Monday that it is okay to play around with iodine taking more or less

> as it feels good, but I didn't now that stopping for a couple days

> was okay. Had I know that I would have quit for a couple days last

> week when it made me really sick. Thanks again,

>

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Guest guest

How long have you been taking iodine? Do we eventually get all the

bromide out and not have detox symptoms again? Did your headache go

away quickly by skipping a dose?

>

> I do it all the time when I need to. Today I woke up with a raging

headache

> which is my worst bromide symptom, so I didn't take any today.

>

>

> ----- Original Message -----

>

>

>

> > ,

> > That is good to know. For some reason I thought if you took a

break

> > during iodine use the bromide that was " stirred up " would settle

so

> > to speak somewhere else. I read so many things and have such

> > horrible brain fog, I have difficulty remembering/recalling or

> > sometimes just making sense of things. Dr. Brownstein told my

friend

> > Monday that it is okay to play around with iodine taking more or

less

> > as it feels good, but I didn't now that stopping for a couple days

> > was okay. Had I know that I would have quit for a couple days

last

> > week when it made me really sick. Thanks again,

> >

>

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  • 4 weeks later...
Guest guest

HEY DENISE!

I HAVE HAD RSD NOW FOR 25 YEARS. YES....THE RSD CAUSES ME TO BE MUCH MORE

LIKELY TO HAVE INFECTIONS. I HAVE HAD SIMPLE CUTS TURN INTO MAJOR PROBLEMS.

I HAVE HAD CELLULITIS MANY TIMES ALSO....WHICH HAS TURNED INTO MRSA THREE

TIMES NOW.

IT IS MUCH MORE THAN FRUSTRATING. I HAVE FOUND THOUGH THAT THE MINUTE I GET

A CUT, SCRAPED OR BUMP, IF I TREAT IT WITH AN ANTI-BIOTIC OINTMENT, AND KEEP

IT COVERED AND CLEAN IT IS OKAY....AND IF NECESSARY, GO ON AN ANTI-BIOTIC

FOR THE CELLULITIS, IT DOESN'T STAY AS LONG...AND HEALS MUCH FASTER AND DOES

NOT RETURN.

I HOPE THAT THE STIM IS HELPING YOUR PAIN. I HAVE HAD MINE NOW FOR FOUR

YEARS...AND IT HASN'T DONE A DAMNED THING. I HAD ANOTHER ONE ABOUT 14 YEARS

AGO

FOR RSD AND IT WORKED LIKE A CHARM...IT LITERALLY WAS THE DIFFERENCE BETWEEN

NIGHT AND DAY. I AWOKE IN THE RECOVERY ROOM AMAZED.....I WAS HOPING FOR THE

SAME TO HAPPEN THIS TIME..OH WELL......I WILL KEEP ON HOPING THAT ONE DAY

IT WILL HAPPEN>

IN THE PAST 25 YEARS, I HAVE COME TO REALIZE THAT THRI ARE SOME REALLY WEIRD

THINGS THAT HAPPEN TO US WHEN WE HAVE RSD...SOME THAT JUST CANNOT BE

EXPLAINED.

I HOPE YOU HAVE A GOOD WEEK.

KATHY

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

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Hello,

Thank-You so much for sharing your story.I don't have a scs . I have talked

to a doctor about a trial.I have been dealing with infections inside,I was so

afraid to have this done.I am amazed at the number of people that this has help

with pain.Maybe It is worth a try. That is true, even a bug bite takes me weeks

to heal too. Thanks

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I am feeling you denise...I am a slow healer also. You can take steps to prepare

your body ahead of time and continue them until you are healed. For example eat

as healthy as possible and get as healthy as you can, I know this part is hard

based on your pain. I ate lots of protein and made sure I was taking my

vitamins. My trial was a piece of cake...however my first stimulator had to be

removed because I didnt eat well before or after and I got an infection and

didnt have to ability to heal...so the infections kept returning and my incision

wouldnt close. They removed it because it was open, infected, and I was at risk

for the infection to reach my spine. So, I immediately got my act together so

when I healed I could start over as soon as possible. I found protein and lots

of it helped my body to have what it needed to heal. Also plenty of fluids and

as much nutrition you can manage to eat or drink. I ate protein bars and protein

shakes daily, usually I

had several protein bars in a day. I also ate smaller meals more often rather

than a couple of larger meals. I dont eat much to start with so I had to work

really hard to get enough nutrition into my body. Sometimes I would only eat a

bite or two of a bar at a time. I also found it very helpful to plan ahead with

bandages and antibiotic ointment as well as clean water for rinsing, gloves to

avoid spreading germs, and anything I could do to avoid getting another

infection. As far as exercise I am limited to stretching and walking and thats

not always easy either. I just did what I could when I could. Get lots of rest.

Have friends and/or family help with responsibilities and taking care of you.

Make meals ahead of time if you can. If you have kids...make sure the house is

stocked with food they can prepare for themselves. Also teach them how to do

things for themselves in advance that will help them and also help take up some

of your work...like folding

laundry or carrying the laundry basket for you. You cant imagine how much those

little things mean to your when you are trying to recover. Just some lengthy

suggestions.......

Deanna

Re: New to the group

Hello,

Thank-You so much for sharing your story.I don't have a scs . I have talked to a

doctor about a trial.I have been dealing with infections inside,I was so afraid

to have this done.I am amazed at the number of people that this has help with

pain.Maybe It is worth a try. That is true, even a bug bite takes me weeks to

heal too. Thanks

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Guest guest

HEY DENISE...WOULD YOU POSSIBLY CONSIDER THE INTRATHECAL PAIN PUMP? THIS

HELPS MANY PEOPLE ALSO. I HAD ONE AND THE ONLY REASON IT DIDN'T HELP ME IS

BECAUSE MY RSD IS EXTREMELY SEVERE....IT CERTAINLY DID HELP THOUGH WHEN THE

SPASMS WOULD HIT....THE DR WOULD FILL IT WITH MEDS TO STOP THEM....THAT WAS

LIKE

A MIRACLE.

GOOD LUCK!

KATHY

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

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Guest guest

Hey Kathy,

I wish they had something out there that was helpful with the pain and not

harmful.Maybe someday ! Thanks

GAVI@... wrote:

HEY DENISE...WOULD YOU POSSIBLY CONSIDER THE INTRATHECAL PAIN PUMP?

THIS

HELPS MANY PEOPLE ALSO. I HAD ONE AND THE ONLY REASON IT DIDN'T HELP ME IS

BECAUSE MY RSD IS EXTREMELY SEVERE....IT CERTAINLY DID HELP THOUGH WHEN THE

SPASMS WOULD HIT....THE DR WOULD FILL IT WITH MEDS TO STOP THEM....THAT WAS LIKE

A MIRACLE.

GOOD LUCK!

KATHY

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

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Guest guest

Kathy,

With having rsd that many years has yours spread? Mine has spread,I guess we

all ask why us.

KGAVI@... wrote:

HEY DENISE!

YEAH, REALLY...WHAT AS CONCEPT....HUH...TOO TOUGH TO THINK OF ONE, I GUESS.

LOL

HAVE A GREAT WEEKEND...AND HANG IN.

KATHY

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

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HEY DENISE...

YES, UNFORTUNATLEY IT HAS SPREAD TO ALL PARTS OF THE BODY. THE WORST HAS TO

BE THE BACK.

YES, IT SUCKS....BUT WHAT CAN YOU DO ?

I REFUSE TO GIVE UP LIKE SO MANY OTHER PEOPLE DO. BELEIVE ME, I HAVE MY

SHARE OF BAD DAYS, BUT I REALLY TRY TO GET OUT OF IT ASAP.

HAVE A GREAT DAY!

KATHY

PS WHEN IT DOES SPREAD...I TRY TO GET INTO PT ASAP...AS PT IS THE ONLY

THING THAT HELPS TO REDUCE THE SEVERITY OF THE RSD...HURST LIKE ALL HELL, BUT

IN

THE LONG RUN IT IS HELPFUL

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

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Guest guest

I use arnica patches they real help.I had a couple of years of PT,sometimes it

would make

the rsd worse. I will never give up,hopefully they will find a cure. Thanks

KGAVI@... wrote: HEY DENISE...

YES, UNFORTUNATLEY IT HAS SPREAD TO ALL PARTS OF THE BODY. THE WORST HAS TO

BE THE BACK.

YES, IT SUCKS....BUT WHAT CAN YOU DO ?

I REFUSE TO GIVE UP LIKE SO MANY OTHER PEOPLE DO. BELEIVE ME, I HAVE MY

SHARE OF BAD DAYS, BUT I REALLY TRY TO GET OUT OF IT ASAP.

HAVE A GREAT DAY!

KATHY

PS WHEN IT DOES SPREAD...I TRY TO GET INTO PT ASAP...AS PT IS THE ONLY

THING THAT HELPS TO REDUCE THE SEVERITY OF THE RSD...HURST LIKE ALL HELL, BUT IN

THE LONG RUN IT IS HELPFUL

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

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