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Yelena,

Welcome! There are a wide variety of straps out there that help keep the

aids in place, as well as clipped on to clothing so they are not lost in

those early adjustment months. We've had success with clips and straps from

the Ear Connection (www.getsafensound.com), but other families swear by

Critter Clips, Huggies, and others brands.

My daughter's first set of aids were by Phonak too. Until she was about 2,

she used a pediatric ear hook with them, instead of the adult sized one that

came with the aid (this is the plastic piece that connects the aid to the

earmold). The pediatric hook is about half the size and kept the aids from

flopping off her ear. Your audiologist should be able to provide these for

you (ask for a backup pair, too, as we tended to have to replace them every

so often).

If the problem persists, you may want to consider experimenting with earmold

styles and materials with your audiologist. Check with your coverage, but

most earmolds come with a 3 month warranty, which allows for free remakes

during that period of time. For us, it took a few molds to figure out the

right combination of material, tubing and design to get a mold that can

support the aid well.

Finally, depending on his other medical issues, you may want to ask for

suggestions from his other therapists, doctors, etc. I know of some

families who have used products intended for their children's other medical

needs and integrated them successfully for the hearing aids.

Good luck!

Kerry

New member

> Greetings to all!

> I'm Yelena, mother of a beautiful 2.8 years old

> , who has multiple disabilities and a mild to

> moderate conductive hearing loss.

> just got his first set of hearing aids, Phonak

> Classica, and we already have some problems.

> I searched the net, but could not find much, and hope

> that someone from this group could help with some

> advice.

> has small ears with very soft cartilage, and

> the aids just falling off all the time. I tried to

> secure them with medical tape, but the tape damages

> his skin.

> He was given soft plastic circles that should go

> around the ear and help to hold aids in place, but

> they are falling off the 's ears together with

> the aids.

> Could someone suggest a solution to this?

> Thanks.

> Yelena

>

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Guest guest

Yelena,

Welcome! There are a wide variety of straps out there that help keep the

aids in place, as well as clipped on to clothing so they are not lost in

those early adjustment months. We've had success with clips and straps from

the Ear Connection (www.getsafensound.com), but other families swear by

Critter Clips, Huggies, and others brands.

My daughter's first set of aids were by Phonak too. Until she was about 2,

she used a pediatric ear hook with them, instead of the adult sized one that

came with the aid (this is the plastic piece that connects the aid to the

earmold). The pediatric hook is about half the size and kept the aids from

flopping off her ear. Your audiologist should be able to provide these for

you (ask for a backup pair, too, as we tended to have to replace them every

so often).

If the problem persists, you may want to consider experimenting with earmold

styles and materials with your audiologist. Check with your coverage, but

most earmolds come with a 3 month warranty, which allows for free remakes

during that period of time. For us, it took a few molds to figure out the

right combination of material, tubing and design to get a mold that can

support the aid well.

Finally, depending on his other medical issues, you may want to ask for

suggestions from his other therapists, doctors, etc. I know of some

families who have used products intended for their children's other medical

needs and integrated them successfully for the hearing aids.

Good luck!

Kerry

New member

> Greetings to all!

> I'm Yelena, mother of a beautiful 2.8 years old

> , who has multiple disabilities and a mild to

> moderate conductive hearing loss.

> just got his first set of hearing aids, Phonak

> Classica, and we already have some problems.

> I searched the net, but could not find much, and hope

> that someone from this group could help with some

> advice.

> has small ears with very soft cartilage, and

> the aids just falling off all the time. I tried to

> secure them with medical tape, but the tape damages

> his skin.

> He was given soft plastic circles that should go

> around the ear and help to hold aids in place, but

> they are falling off the 's ears together with

> the aids.

> Could someone suggest a solution to this?

> Thanks.

> Yelena

>

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Guest guest

Yelena,

Welcome! There are a wide variety of straps out there that help keep the

aids in place, as well as clipped on to clothing so they are not lost in

those early adjustment months. We've had success with clips and straps from

the Ear Connection (www.getsafensound.com), but other families swear by

Critter Clips, Huggies, and others brands.

My daughter's first set of aids were by Phonak too. Until she was about 2,

she used a pediatric ear hook with them, instead of the adult sized one that

came with the aid (this is the plastic piece that connects the aid to the

earmold). The pediatric hook is about half the size and kept the aids from

flopping off her ear. Your audiologist should be able to provide these for

you (ask for a backup pair, too, as we tended to have to replace them every

so often).

If the problem persists, you may want to consider experimenting with earmold

styles and materials with your audiologist. Check with your coverage, but

most earmolds come with a 3 month warranty, which allows for free remakes

during that period of time. For us, it took a few molds to figure out the

right combination of material, tubing and design to get a mold that can

support the aid well.

Finally, depending on his other medical issues, you may want to ask for

suggestions from his other therapists, doctors, etc. I know of some

families who have used products intended for their children's other medical

needs and integrated them successfully for the hearing aids.

Good luck!

Kerry

New member

> Greetings to all!

> I'm Yelena, mother of a beautiful 2.8 years old

> , who has multiple disabilities and a mild to

> moderate conductive hearing loss.

> just got his first set of hearing aids, Phonak

> Classica, and we already have some problems.

> I searched the net, but could not find much, and hope

> that someone from this group could help with some

> advice.

> has small ears with very soft cartilage, and

> the aids just falling off all the time. I tried to

> secure them with medical tape, but the tape damages

> his skin.

> He was given soft plastic circles that should go

> around the ear and help to hold aids in place, but

> they are falling off the 's ears together with

> the aids.

> Could someone suggest a solution to this?

> Thanks.

> Yelena

>

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Guest guest

Hi Yelena - welcome! My older son was a bit older when he got his hearing aids

(he was 3-1/2) but i've heard other parents have used toupee tape with success.

let us know how it works!

Barbara

--- You wrote:

> Greetings to all!

> I'm Yelena, mother of a beautiful 2.8 years old

> , who has multiple disabilities and a mild to

> moderate conductive hearing loss.

> just got his first set of hearing aids, Phonak

> Classica, and we already have some problems.

> I searched the net, but could not find much, and hope

> that someone from this group could help with some

> advice.

> has small ears with very soft cartilage, and

> the aids just falling off all the time. I tried to

> secure them with medical tape, but the tape damages

> his skin.

> He was given soft plastic circles that should go

> around the ear and help to hold aids in place, but

> they are falling off the 's ears together with

> the aids.

> Could someone suggest a solution to this?

> Thanks.

--- end of quote ---

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Guest guest

Hi Yelena - welcome! My older son was a bit older when he got his hearing aids

(he was 3-1/2) but i've heard other parents have used toupee tape with success.

let us know how it works!

Barbara

--- You wrote:

> Greetings to all!

> I'm Yelena, mother of a beautiful 2.8 years old

> , who has multiple disabilities and a mild to

> moderate conductive hearing loss.

> just got his first set of hearing aids, Phonak

> Classica, and we already have some problems.

> I searched the net, but could not find much, and hope

> that someone from this group could help with some

> advice.

> has small ears with very soft cartilage, and

> the aids just falling off all the time. I tried to

> secure them with medical tape, but the tape damages

> his skin.

> He was given soft plastic circles that should go

> around the ear and help to hold aids in place, but

> they are falling off the 's ears together with

> the aids.

> Could someone suggest a solution to this?

> Thanks.

--- end of quote ---

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Guest guest

Hi Yelena - welcome! My older son was a bit older when he got his hearing aids

(he was 3-1/2) but i've heard other parents have used toupee tape with success.

let us know how it works!

Barbara

--- You wrote:

> Greetings to all!

> I'm Yelena, mother of a beautiful 2.8 years old

> , who has multiple disabilities and a mild to

> moderate conductive hearing loss.

> just got his first set of hearing aids, Phonak

> Classica, and we already have some problems.

> I searched the net, but could not find much, and hope

> that someone from this group could help with some

> advice.

> has small ears with very soft cartilage, and

> the aids just falling off all the time. I tried to

> secure them with medical tape, but the tape damages

> his skin.

> He was given soft plastic circles that should go

> around the ear and help to hold aids in place, but

> they are falling off the 's ears together with

> the aids.

> Could someone suggest a solution to this?

> Thanks.

--- end of quote ---

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  • 1 month later...
Guest guest

Hi Alisa,

Welcome! We are in Massachusetts too (South Shore). My daughter, Hadley,

is 2 1/2 and has a severe bilateral loss due to Cx26 that was diagnosed at

birth. Congrats on finding this group.

Kerry

Mom to Hadley, 2 1/2, severe bilateral loss, Cx26, Siemens Triano aids, AVT

New Member

> Hello Everyone,

>

> My name is Alisa. I have 2 daughters, (age 3) and Hannah (18

> months). Hannah has a bilateral moderate to severe hearing loss.

> She was diagnosed at birth throught the newborn hearing screening.

> She has been double aided since 8 wks. Hannah was diagnosed with

> Mondini Syndrome and Enlarged Vestibular Aqueducts. We currently

> attend the Thayer Lindsley Nursery as well as therapy through Early

> Intervention. I look forward to being participating as well as

> learning from this group.

>

> Thank you,

> Alisa

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

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Guest guest

Hi Alisa,

Welcome! We are in Massachusetts too (South Shore). My daughter, Hadley,

is 2 1/2 and has a severe bilateral loss due to Cx26 that was diagnosed at

birth. Congrats on finding this group.

Kerry

Mom to Hadley, 2 1/2, severe bilateral loss, Cx26, Siemens Triano aids, AVT

New Member

> Hello Everyone,

>

> My name is Alisa. I have 2 daughters, (age 3) and Hannah (18

> months). Hannah has a bilateral moderate to severe hearing loss.

> She was diagnosed at birth throught the newborn hearing screening.

> She has been double aided since 8 wks. Hannah was diagnosed with

> Mondini Syndrome and Enlarged Vestibular Aqueducts. We currently

> attend the Thayer Lindsley Nursery as well as therapy through Early

> Intervention. I look forward to being participating as well as

> learning from this group.

>

> Thank you,

> Alisa

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

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Guest guest

Hi Alisa,

Welcome! We are in Massachusetts too (South Shore). My daughter, Hadley,

is 2 1/2 and has a severe bilateral loss due to Cx26 that was diagnosed at

birth. Congrats on finding this group.

Kerry

Mom to Hadley, 2 1/2, severe bilateral loss, Cx26, Siemens Triano aids, AVT

New Member

> Hello Everyone,

>

> My name is Alisa. I have 2 daughters, (age 3) and Hannah (18

> months). Hannah has a bilateral moderate to severe hearing loss.

> She was diagnosed at birth throught the newborn hearing screening.

> She has been double aided since 8 wks. Hannah was diagnosed with

> Mondini Syndrome and Enlarged Vestibular Aqueducts. We currently

> attend the Thayer Lindsley Nursery as well as therapy through Early

> Intervention. I look forward to being participating as well as

> learning from this group.

>

> Thank you,

> Alisa

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

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Guest guest

Thank you Kerry. I look forward to being an active participant in the group!

New Member

> Hello Everyone,

>

> My name is Alisa. I have 2 daughters, (age 3) and Hannah (18

> months). Hannah has a bilateral moderate to severe hearing loss.

> She was diagnosed at birth throught the newborn hearing screening.

> She has been double aided since 8 wks. Hannah was diagnosed with

> Mondini Syndrome and Enlarged Vestibular Aqueducts. We currently

> attend the Thayer Lindsley Nursery as well as therapy through Early

> Intervention. I look forward to being participating as well as

> learning from this group.

>

> Thank you,

> Alisa

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

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Guest guest

Thank you Kerry. I look forward to being an active participant in the group!

New Member

> Hello Everyone,

>

> My name is Alisa. I have 2 daughters, (age 3) and Hannah (18

> months). Hannah has a bilateral moderate to severe hearing loss.

> She was diagnosed at birth throught the newborn hearing screening.

> She has been double aided since 8 wks. Hannah was diagnosed with

> Mondini Syndrome and Enlarged Vestibular Aqueducts. We currently

> attend the Thayer Lindsley Nursery as well as therapy through Early

> Intervention. I look forward to being participating as well as

> learning from this group.

>

> Thank you,

> Alisa

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

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Guest guest

Thank you Kerry. I look forward to being an active participant in the group!

New Member

> Hello Everyone,

>

> My name is Alisa. I have 2 daughters, (age 3) and Hannah (18

> months). Hannah has a bilateral moderate to severe hearing loss.

> She was diagnosed at birth throught the newborn hearing screening.

> She has been double aided since 8 wks. Hannah was diagnosed with

> Mondini Syndrome and Enlarged Vestibular Aqueducts. We currently

> attend the Thayer Lindsley Nursery as well as therapy through Early

> Intervention. I look forward to being participating as well as

> learning from this group.

>

> Thank you,

> Alisa

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

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  • 4 months later...

Hi Trent,

Welcome to the group, I'm glad you found us. I'm sorry however to hear

of your diagnosis. I hope you are in the early stages of the disease and

you are able to live out the rest of your life with nothing more than some

extra pills, labs, and doctors appointments. If you haven't already please

check out our sister site at www.igan.ca it is full of great info written

from the patients point of view by our founder Pierre. It's a great site to

refer family to as they try to grasp the in's and out's of this disease.

You are among good company as we have quite a few nursing students and

nurses in the group. Please feel free to ask away with questions here or

search past posts on the Yahoo Groups page for answers...tons of great info

in those back posts.

Welcome again!

Amy G.

New member

>

> Hello everyone. My name is Trent, and I am a new member to the IgA group.

To tell you a little about myself, I am a 24 year-old Nursing Student in

central Illinois. I have a wife, and a 3 year old little boy named,

Draelin. I was diagnosed today with IgA nephropathy, and am up late doing

some research on the disease.

>

> I hope to get to know some of you well over time.

>

> Thank you for the opportunity to join.

>

> Trent

>

>

>

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Hi Trent.

Amy had already welcomed you on behalf of the moderators, but I would just

like to add my own. You know, I was 24 when this started for me. I'm 53 now,

and I had a completely normal life, for the most part. I only had to start

dialysis 2 years ago. Had I had better blood pressure control in the early

years, I might not even be on dialysis yet. So anyway, don't despair. Let's

hope that one day you will be able to look back as a longtimer with IgAN.

Pierre

New member

>

> Hello everyone. My name is Trent, and I am a new member to the IgA group.

To tell you a little about myself, I am a 24 year-old Nursing Student in

central Illinois. I have a wife, and a 3 year old little boy named,

Draelin. I was diagnosed today with IgA nephropathy, and am up late doing

some research on the disease.

>

> I hope to get to know some of you well over time.

>

> Thank you for the opportunity to join.

>

> Trent

>

>

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Hello Trent

My name is Marcia. I too am a new member to this group as of this week. I live

in Ontario, Canada and I'm presently trying to get to know everyone and their

situations.

I'm sure it came as a complete surprise to you as it did me when I was

diagnosed. There is so much information you can find on line as well as in this

group. I've found out so much myself from this group in regards to preventing

kidney failure. My doctors didn't treat me at all. I never knew they could

have done something. They advised me that there was a test study in regard to

fish oil. There was no proof that it would work, but it was something they said

I could try. I didn't want to be a lab. I don't know if it would have made a

difference. What has your doctor told you? Are they advising you of any sort

of treatment Trent?

Marcia

Trent Riden wrote:

Hello everyone. My name is Trent, and I am a new member to the IgA group. To

tell you a little about myself, I am a 24 year-old Nursing Student in central

Illinois. I have a wife, and a 3 year old little boy named, Draelin. I was

diagnosed today with IgA nephropathy, and am up late doing some research on the

disease.

I hope to get to know some of you well over time.

Thank you for the opportunity to join.

Trent

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Welcome to the group Marcia. I live in Ontario too - the nation's capital,

in fact. You know there are some situations with IgAN where it's perfectly

reasonable to wait and see, or to treat only with appropriate blood pressure

meds. Fish oil is really in the " it can't hurt category " . You're not being a

guiney pig if you try fish oil, because it has been clinically-trialed

extensively by the Mayo Clinic and others for more than a decade. The

benefits are not really that clearcut, but it doesn't seem to cause any

harm.

Many (if not most) people who are diagnosed with IgAN only have mild

proteinuria. I was one of those. I never had heavier proteinuria until very

late, in just the couple of months before I had to start dialysis (and that

was 25 years after my initial diagnosis of a kidney problem). In those

cases, it's really a toss-up as to whether it's worth subjecting the patient

to the adverse effects of powerful drugs like oral steroids and other types

of immune system suppressing drugs. It's a situation where you might help

the kidneys a bit, but seriously harm the patient in other ways. Doctors

make these " benefits vs risks " decisions every day.

Anyway, good luck.

Pierre

Re: New member

>

> Hello Trent

>

> My name is Marcia. I too am a new member to this group as of this week.

I live in Ontario, Canada and I'm presently trying to get to know everyone

and their situations.

>

> I'm sure it came as a complete surprise to you as it did me when I was

diagnosed. There is so much information you can find on line as well as in

this group. I've found out so much myself from this group in regards to

preventing kidney failure. My doctors didn't treat me at all. I never knew

they could have done something. They advised me that there was a test study

in regard to fish oil. There was no proof that it would work, but it was

something they said I could try. I didn't want to be a lab. I don't know

if it would have made a difference. What has your doctor told you? Are

they advising you of any sort of treatment Trent?

>

> Marcia

>

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Hi Trent,

A very warm welcome to you. I am sorry you were diagnosed with IgAN. I

think Amy already mentioned this, but if you have not yet had the chance to look

at our sister site at www.igan.ca, it is really a fantastic place to start and

you will find many of your questions are answered there.

We have several nurses, and even another nursing student in the group so you

are in great company.

Do you know what your level of function is? Hopefully you have been

diagnosed early and by way of encouraging you, the majority of people with IgAN

never

do progress to ESRD. I pray you are one of those that never has to contend

with renal failure.

Welcome again!

In a message dated 10/22/2004 8:53:59 PM Pacific Daylight Time,

trentriden@... writes:

> Hello everyone. My name is Trent, and I am a new member to the IgA group.

> To tell you a little about myself, I am a 24 year-old Nursing Student in

> central Illinois. I have a wife, and a 3 year old little boy named, Draelin.

I

> was diagnosed today with IgA nephropathy, and am up late doing some research

> on the disease.

>

> I hope to get to know some of you well over time.

>

> Thank you for the opportunity to join.

>

> Trent

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  • 1 year later...

hi wilcome to the group elezibath. this is janet from nebraska also have

thyroid problems.

new member

> Hello, my name is . I have been diagnosed with hyperthyroidism

> a couple of months ago. I was having heart palpitations and was losing

> weight without even trying. I had several tests done and they found a

> cyst on my thyroid. Doctor didn't want to put me on any medication or

> do any treatments unless the thyroid causes me problems with breathing.

> I have been having weird problems since then. I also have Multiple

> Sclerosis. So I don't know what is going on, to be truthful. My right

> eye has been spazzing like a twitch but within the eye itself. I know

> it isn't the eye lid. Now my face is numb on the left side. Anyone have

> this problem? Thanks for any help.

>

>

>

>

>

>

>

>

>

>

>

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I'm by no means a professional here, but just from what I have read about, and from what I know about friend who is hyperthyroid, it sounds to me like the doctors need to be doing something rather than nothing!! My friend in high school had problems with hypherthyroidism, and her eyes bulged out (buphthalmia) because of it. Not to scare you, but they never went back to normal. I am worried on your behalf of the funny eye twitching feeling and also the numb face. I am hypo, so I don't know much about hyper, but I really think if it were me, I'd be finding a second opinion. Keep us informed, and know you're in the right place for information, because these people are the most wonderful resource I've found. *hugs*

S.

hi wilcome to the group elezibath. this is janet from nebraska also have thyroid problems.

new member> Hello, my name is . I have been diagnosed with hyperthyroidism> a couple of months ago. I was having heart palpitations and was losing

> weight without even trying. I had several tests done and they found a> cyst on my thyroid. Doctor didn't want to put me on any medication or> do any treatments unless the thyroid causes me problems with breathing.

> I have been having weird problems since then. I also have Multiple> Sclerosis. So I don't know what is going on, to be truthful. My right> eye has been spazzing like a twitch but within the eye itself. I know

> it isn't the eye lid. Now my face is numb on the left side. Anyone have> this problem? Thanks for any help.>> >>>>>>>>

>

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Hi ,

The numbness on one side of the face could be Bell's Palsy, which is an auto-immune disorder.Best of luck.

Rita in Pajanet smith` wrote:

hi wilcome to the group elezibath. this is janet from nebraska also have thyroid problems. new member> Hello, my name is . I have been diagnosed with hyperthyroidism> a couple of months ago. I was having heart palpitations and was losing> weight without even trying. I had several tests done and they found a> cyst on my thyroid. Doctor didn't want to put me on any medication or> do any treatments unless the thyroid causes me problems with breathing.> I have been having weird problems since then. I also have Multiple> Sclerosis. So I don't know what is going on, to be truthful. My

right> eye has been spazzing like a twitch but within the eye itself. I know> it isn't the eye lid. Now my face is numb on the left side. Anyone have> this problem? Thanks for any help.>> >>>>>>>>>

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>

> Hello, my name is . I have been diagnosed with

hyperthyroidism

> a couple of months ago. I was having heart palpitations and was

losing

> weight without even trying. I had several tests done and they

found a

> cyst on my thyroid. Doctor didn't want to put me on any medication

or

> do any treatments unless the thyroid causes me problems with

breathing.

> I have been having weird problems since then. I also have Multiple

> Sclerosis. So I don't know what is going on, to be truthful. My

right

> eye has been spazzing like a twitch but within the eye itself. I

know

> it isn't the eye lid. Now my face is numb on the left side. Anyone

have

> this problem? Thanks for any help.

>

>

>

From Merck..

Amiodarone and interferon- have been reported to induce a wide

variety of functional disorders of the thyroid; discussion is beyond

the scope of this review. However, both drugs can induce thyroiditis

with hyperthyroidism, and patients receiving these drugs should be

closely monitored.

I wonder if you are taking interferon or a form of interferon to

treat your MS..

Do you have your lab results?

With a cyst it is possible for it to what is called a hot nodule and

be the cause of the hyper symptoms or it could be your medication or

the Cyst could ( less than 5 % chance) be the big C and requires

further investigation as to why you are hyper.

Kats3boys

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>

> Hello, my name is . I have been diagnosed with

hyperthyroidism

> a couple of months ago. I was having heart palpitations and was

losing

> weight without even trying. I had several tests done and they

found a

> cyst on my thyroid. Doctor didn't want to put me on any medication

or

> do any treatments unless the thyroid causes me problems with

breathing.

> I have been having weird problems since then. I also have Multiple

> Sclerosis. So I don't know what is going on, to be truthful. My

right

> eye has been spazzing like a twitch but within the eye itself. I

know

> it isn't the eye lid. Now my face is numb on the left side. Anyone

have

> this problem? Thanks for any help.

>

>

>

From Merck..

Amiodarone and interferon- have been reported to induce a wide

variety of functional disorders of the thyroid; discussion is beyond

the scope of this review. However, both drugs can induce thyroiditis

with hyperthyroidism, and patients receiving these drugs should be

closely monitored.

I wonder if you are taking interferon or a form of interferon to

treat your MS..

Do you have your lab results?

With a cyst it is possible for it to what is called a hot nodule and

be the cause of the hyper symptoms or it could be your medication or

the Cyst could ( less than 5 % chance) be the big C and requires

further investigation as to why you are hyper.

Kats3boys

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