Re: Newbie

[Guest guest]

Hi, my name is ann and I'm 39. For the last eight months I've had the

most horrible vaginal itchy/burny thing going on here. After exhausting tons

of stuff, I had a biopsy done last week. Dr. just called and said it was

chronic dermatitis. While I'm glad it's not cancerous, I know dermatitis can

be a vague, distressing thing that really has no answers. I'm so stressed.

Can anybody direct me to any good info. on this or have any of you had this

too? I had a hyster. 3 years ago.

ann

[Guest guest]

I just want to welcome you to the list Gregg. I'm still rather a newbie

myself, having been here for a couple of months (maybe).

There are lots of informed people on this list that can supply more

information than my brain will process. From the list of your symptoms, it

sounds like this may very well be the right location for you.

I belonged to the list a month or more before I got my Chiari dx, and am

still awaiting the " final verdict " from a Chiari doctor in North Carolina.

I found lots of really good advice from the first--especially concerning the

" doctor search. " Since I've suffered with symptoms for years and seen three

neurologists (on multiple occasions) and a neurosurgeon and was never dxd or

even heard the word " Chiari, " I had mixed feelings upon discovering the

list.

I was told by more than one person on the list that sometimes it's a good

thing to skip the neurologist and go for the neurosurgeon--if you can get to

one without a referral. My rheumatologist referred me since he is aware of

my neurological symptoms and has referred me numerous times to neurology

with no results. Will he ever be surprised with the report he receives from

Dr. Rosner!

I don't know a lot, but I have picked up a few things here. One of them is

there are so many neurologists who are not aware of Chiari or don't know how

to dx it and then there are differences among the neurosurgeons, of course.

It has been mentioned on the list that a doctor education program would be a

wonderful thing. I'm just saying to don't waste your time going to a doctor

who isn't familiar with Chiari.

I don't know how many list members we have from Australia, but maybe some of

them can refer you. The Australian referral list may assist you also, but I

also felt better by having personal referrals from list members.

Although it's not the greatest thing in the world to be dxd with Chiari, in

some ways it does bring a little ray of light to think there could be some

improvement in some of our lifestyles--those of us with Chronic Fatigue

Syndrome/Fibromyalgia, never-ending pain and a variety of symptoms as you

can find on some of the Chiari sites.

Well, wrote too much as usual ... but certainly hoping and praying that you

will find the right doctor. Having Chiari ruled in/out is definitely the

most important thing for you right now. I do hope some Australia residents

can recommend someone for you.

Blessings,

JC (Just Crystal)

[Guest guest]

Cyn,

Welcome to the group! I'm new to and understand what your feeling with having family so far away and kinda feeling down on oneself.. :c( Even the decision to join a group and reach was really hard but I am now sooooooo glad I took the plunge and just did it. This group has been fantastic and although my hubby is trying like anything to understand (I think he is so understanding because he is a cancer survivor when he was a child and has been through painful experiences) its still nice to be able to say "Ohh My Gosh, I just had the most horribly painful day" and then be able to list everything that is bothering you and every single person here will totally understand and be there for you. It is a very empowering feeling and even though my last few days have been painful I have felt sooo much better with each one! There really are people who understand and know I'm not crazy!! LOL

The loss of mobility is something I'm just starting to except. I have been telling myself that I'm just out of shape, or I have not been wearing my braces at night on my hands...but I was lying and kept making myself promise's I just could not do. Like "Tomorrow I will finish spackling and get that whole room painted, it will only take me about 5 hours"....ahhh..okay...right....I'm totally on it....LOL...

I'm glad your here and can't wait to learn more about you!!!! :c)

April

Hello all, my name is Cyndi. I am 29 years old and I just found out 3 months ago that I have Fibro. I am glad I have found a supportive group. No one really understands. I am definitely taken a downward spiral. I went from coaching kids baseball, and playing basketball on a daily basis, to walking with a cane and having trouble even working. I guess I am at the poor me stage. But I am trying to fight it, and to not let it control me but its hard. My partner is having trouble understanding and my family is 2000 miles away. I hope I don't sound too pathetic to you all. Just in need of some good friends!Thanks for listeningCyn

[Guest guest]

Welcome Cyndi,

Sad that you have reason to join us but I know you will find this a very supportive group where Everyone understands what you are going through. You definitely don't sound pathetic to us.. just a "normal" Fibromite!

Hugs

Penny UKOn 10/09/2004 08:09:02, fibromyalgia_support_group wrote:> Hello all, my name is Cyndi. I am 29 years old and I just found out 3> months> ago that I have Fibro. I am glad I have found a supportive group..... No one> really understands. > My partner is having trouble understanding and my family is 2000 miles> away.> I hope I> don't sound too pathetic to you all. Just in need of some good friends!> Thanks for listening> > Cyn> >

[Guest guest]

Does anyone know of any good articles to print for people who don't have it?? Ones that talk in very plain non medical terminology?? :c)

Thanks

April

Hi Cyndi, I understand how you feel. I have had fibro since 1989. I use to jog everyday for at least five miles and loved it. When I realized I had to quit jogging and being as active as I once was, I went into denial. It took me a number of years and a lot of medication to accept my condition. Also, my family did not understand what had happened to me, especially my children. They now understand but it took some time. I would like to suggest that whenever you can get some information on fibromyalgia in the form of a pamphlet or article ask your husband to read it. Do this until you feel he has an understanding. I had to do this with my children who are now adults. Keep the faith and hang in there; better days will come. Gail in SC

[Guest guest]

Hi Bonnie,

Before you make a decision for a Da Vinci or any removal of the

prostate, please investigate all your options. Please show this

to your husband:

I am sorry to hear about your diagnosis. ABOVE ALL DO NOT

PANIC AND RUSH INTO TREATMENT. Your cancer has

probably been growing in your body for several years. It will not kill

you any time soon. Take the time to learn all the options

I had my prostate removed in 1992- but we did not have as many

options at that time. I would not choose surgery today. I believe

that brachytherapy, (seed implants or HDR), is a much better option.

No matter what therapy one chooses, there are always some side

effects, No matter who does it or how it is done, removal of the

prostate has side effects, some more pronounced and unpleasant

than others.

You are wise to do a lot of research. One reason not to have surgery

is because sex will never be the same after the prostate is removed.

It and the seminal vesicles manufacture almost all of the ejaculate.

During orgasm, the prostate squeezes down and forces the semen

out. This is a part of the pleasure of an orgasm. You may still be

able to have an orgasm, but it may take a lot more stimulation.

Many men who have surgery are impotent afterwards. There are

nerves on each side of the prostate that control erectile function.

These nerves are difficult to see and quite often they are severed

or severely damaged.

Another side effect of RP is that many men lose some length and

girth afterwards. Several studies have been done on this subject.

Go to www.google.com and search for Loss of Penile Length and

Radical Prostatectomy. Before my surgery, I had 7 1/4 inches. Now

I can barely manage 6 inches when using my Vacuum Erection Device

(VED)

Many men are also incontinent afterwards because the primary

bladder valve is intimately connected to the prostate. It is very

often damaged and some men are completely incontinent. Some

of these men have to have an Artificial Urinary Sphincter implanted

in order to control their urinary output. Some men learn to use

the secondary valve below the prostate by doing Kegel exercises.

But even if they do learn to control normal urinary functions with this

valve, when they try to have an erection or sex, this valve will open

and they will have leakage. This valve has always opened during

sexual activities and no amount of Kegel exercises will cause it

do otherwise. Since the primary valve is not involved in brachytherapy,

there is little or no incontinence.

The impotence rate is also very low. Some men will still have an

ejaculate, though it may be less in volume. Some men are

even able to father children after brachytherapy. After a RP, one may

be able to have sperm aspirated from the testes and used to

impregnate a woman. But it is a difficult procedure, is expensive and

may not always be successful. If a man thinks he may want to father

children after a RP, he should consider banking some of his sperm.

One of the best brachytherapists is Dr. Dattoli who is in

Florida. Go to Google and search on his name and you will see

lots of information and directions to his clinic.

I wish you all the bestAubrey Pilgrim, DC (Ret.)Author of A Revolutionary Approach to Prostate Cancer-Read the original book for free at: www.prostatepointers.org/prostate/lay/apilgrimRead the new edition for free at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision

Greetings I am new on this list, so bear with my dumb questions that you have undoubtedly hashed out many times. My husband will be 55 next week and recently diagnosed with prostate cancer. We have just begun the walk thru cancer. [Gleason score is 6. TNM stage score is T2b. ABCD stage score is B1]

First we had to find out where the prostate was located, so we could expain it to our adult children. Now we learn lots of new terminology and have many decisions to make- and yet the feel the pressure of hurry up, hurry up. Our Doctor gave us a book to read that is nothing but grim news all the way through. I take it this will not be a "cake walk".

We desire a second opinion and have taken some steps towards getting that.

We also are interested in having the DaVinci procedure done (Robotic) - but not sure where or how to get that referral yet. We live in FL.

Any of you had the DaVinci? Were you pleased?

Of course the side effects of all of this is not pleasant. He already has had substanial bleeding from just the biopsy two weeks ago. He is also a heart patient, having had three heart attacks already. So this indeed will not be a cake walk, but we will walk it together.

Bonnie in FL

[Guest guest]

Dear Bonnie.

The first thing you and your husband need to do is slow down and not let anyone hurry you to an uninformed decision. Get educated first and then make your decision based on what is right for you. Get a book called "A Primer on Prostate Cancer" The empowered patient's guide by Dr. Strum and Donna Pogliano. At good bookstores everywhere. Read it thoroughly and make yourself aware of your options.

Do not panic. There is time. Make sure his pathology is read by an expert in Prostate Cancer. Get a second opinion if it makes you more comfortable but get educated. Ask questions of this list. It is a wellspring of knowledge about PCa.

Welcome to the club no one wants to join. I wish you good fortune on the coming journey.

"il faut d'abord durer" Hemingway

newbie

Greetings I am new on this list, so bear with my dumb questions that you have undoubtedly hashed out many times. My husband will be 55 next week and recently diagnosed with prostate cancer. We have just begun the walk thru cancer. [Gleason score is 6. TNM stage score is T2b. ABCD stage score is B1]

First we had to find out where the prostate was located, so we could expain it to our adult children. Now we learn lots of new terminology and have many decisions to make- and yet the feel the pressure of hurry up, hurry up. Our Doctor gave us a book to read that is nothing but grim news all the way through. I take it this will not be a "cake walk".

We desire a second opinion and have taken some steps towards getting that.

We also are interested in having the DaVinci procedure done (Robotic) - but not sure where or how to get that referral yet. We live in FL.

Any of you had the DaVinci? Were you pleased?

Of course the side effects of all of this is not pleasant. He already has had substanial bleeding from just the biopsy two weeks ago. He is also a heart patient, having had three heart attacks already. So this indeed will not be a cake walk, but we will walk it together.

Bonnie in FL

((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((

[Guest guest]

Bonnie,

I have no doubt that your have been

inundated with advice and e-mails, so I’ll keep this brief. Some years

after I was diagnosed in 1996 I set up a website aimed at helping newly

diagnosed people understand the basics. It is written in plain and simple

language and I called it YANA- You Are Not Alone Now. It can be found at http://www.yananow.net

Part of the site is reserved for men to

give an account of their experiences with all the treatment options. The

stories of men who have had laparoscopic surgery can be found at http://www.yananow.net/Experiences.html#lrrp

If you got there you will see that many of tghem have given their e-mail

addresses so that you can communicate directly with them if you have any

specific questions to ask them.

Good luck to you and your husband and

remember there are NO dumb questions. We al had a steep learning curve to face

when we were first diagnosed.

All the best

Terry Herbert

in Melbourne Australia

Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason

3+3=6: No treatment. June '04: TURP. Mar '06 PSA 17.40 fPSA 23%

My site is at www.prostatecancerwatchfulwaiting.co.za

It is a tragedy of the world that no one

knows what he doesn’t know, and the less a man knows, the more sure he is

that he knows everything. Joyce Carey

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ]

On Behalf Of Bonnie

Sent: 26 March 2006 12:43 AM

To: egroup_prostate cancer

Subject: newbie

Greetings I am new on this list, so bear with my

dumb questions that you have undoubtedly hashed out many times. My

husband will be 55 next week and recently diagnosed with prostate cancer. We

have just begun the walk thru cancer. [Gleason score is 6.

TNM stage score is T2b.

ABCD stage score is B1]

First we had to find out where the prostate was

located, so we could expain it to our adult children. Now we learn lots of new

terminology and have many decisions to make- and yet the feel the pressure of

hurry up, hurry up. Our Doctor gave us a book to read that is nothing but grim

news all the way through. I take it this will not be a " cake

walk " .

We desire a second opinion and have taken some steps

towards getting that.

We also are interested in having the DaVinci

procedure done (Robotic) - but not sure where or how to get that referral

yet. We live in FL.

Any of you had the DaVinci? Were you pleased?

Of course the side effects of all of this is not

pleasant. He already has had substanial bleeding from just the biopsy two

weeks ago. He is also a heart patient, having had three heart attacks

already. So this indeed will not be a cake walk, but we will walk it

together.

Bonnie in FL

((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((

[Guest guest]

Hi Malissa,

My name is Kim I also had spinal fusion in my neck I actually had two surgeries

in my neck, the last one was a year ago and the pain is still so severe I was

wondering how long ago your surgery was? Welcome to the group I don't speak out

much but I read all the posts and it comforts me to know there are alot of

people that can understand what we are going through.

Subject: Newbie

To: Hugs-N-Pain

Date: Tuesday, June 9, 2009, 10:53 AM

Hi, I'm new here. Thought I'd chime in. I don't get much aleep either.

I've had spinal fusion from C5 to C7 with a plate and screws. I now have

stenosis as well.  I take tizanidine(best muscle relaxer on earth in my

opinion), 4 mg. 1/2 a pill during the day, a whole one at night. For pain I have

a 50 mg Fentanyl patch and take Vicodin for bleed-through pain. I'm on 15 mg of

Prednisone for breathing problems and the anti-inflammatory properties help--I

know because the lower the dose gets, the more I hurt.  My name's Malissa, and

I'm pleased to meet you all. Thanks for letting me join.

[Guest guest]

Hi and Welcome.....Do you know how Fentanel compares to Methadone? Like you are

on 50 mg. of Fendenal, what mg. (about) would you need n Methadone to be abel

the same. I am asking because I am on Methadone and wondering how they stand up

to one another in case I ever decide I need to switch????

Also Sharleen, I think it was, who was writing about needing a disgnosis.....did

anyone ever mention Rheumatoid Arthritis to you? Just wondered by a few things

you said. I am sure they have tried most things, but I thought I would ask????

Thanks, Diane

EMAILING FOR THE GREATER GOOD

Join me

To: Hugs-N-Pain

From: titchsmom@...

Date: Tue, 9 Jun 2009 07:53:10 -0700

Subject: Newbie

Hi, I'm new here. Thought I'd chime in. I don't get much aleep either.

I've had spinal fusion from C5 to C7 with a plate and screws. I now have

stenosis as well. I take tizanidine(best muscle relaxer on earth in my

opinion), 4 mg. 1/2 a pill during the day, a whole one at night. For pain I have

a 50 mg Fentanyl patch and take Vicodin for bleed-through pain. I'm on 15 mg of

Prednisone for breathing problems and the anti-inflammatory properties help--I

know because the lower the dose gets, the more I hurt. My name's Malissa, and

I'm pleased to meet you all. Thanks for letting me join.

[Guest guest]

Welcome to our group Malissa. You will find every one is sweet, comforting and

caring here. So, jump right in and make yourself at home.

Gentle Hugs,

Subject: Newbie

To: Hugs-N-Pain

Date: Tuesday, June 9, 2009, 9:53 AM

Hi, I'm new here. Thought I'd chime in. I don't get much aleep either. I've had

spinal fusion from C5 to C7 with a plate and screws. I now have stenosis as

well.  I take tizanidine(best muscle relaxer on earth in my opinion), 4 mg. 1/2

a pill during the day, a whole one at night. For pain I have a 50 mg Fentanyl

patch and take Vicodin for bleed-through pain. I'm on 15 mg of Prednisone for

breathing problems and the anti-inflammatory properties help--I know because the

lower the dose gets, the more I hurt.  My name's Malissa, and I'm pleased to

meet you all. Thanks for letting me join.

     

[Guest guest]

Diane,

The ratio is 1 to 20, but switching like that can be more complicated than it

seems. The best thing is to ask an experienced pain doctor and follow their

advice. The methadone is in a fast acting form, whereas the fentanyl is

designed to last 3 days (although it only lasts me 2 days). Anyway switching

can be tricky and everyone responds differently.

Hope that helps.

Alanna

Sent from my Verizon Wireless BlackBerry

Newbie

Hi, I'm new here. Thought I'd chime in. I don't get much aleep either.

I've had spinal fusion from C5 to C7 with a plate and screws. I now have

stenosis as well. I take tizanidine(best muscle relaxer on earth in my

opinion), 4 mg. 1/2 a pill during the day, a whole one at night. For pain I have

a 50 mg Fentanyl patch and take Vicodin for bleed-through pain. I'm on 15 mg of

Prednisone for breathing problems and the anti-inflammatory properties help--I

know because the lower the dose gets, the more I hurt. My name's Malissa, and

I'm pleased to meet you all. Thanks for letting me join.

[Guest guest]

Alanna,

Thank you for your advice. It's nice knowing the group has a pharmacist. I swear

pharmacist know more than Drs. sometimes.

Hope you enjoyed the Hawaii pics?

 

Gentle Hugs,

Subject: Re: Newbie

To: Hugs-N-Pain

Date: Tuesday, June 9, 2009, 10:46 AM

Diane,

The ratio is 1 to 20, but switching like that can be more complicated than it

seems.  The best thing is to ask an experienced pain doctor and follow their

advice.  The methadone is in a fast acting form, whereas the fentanyl is

designed to last 3 days (although it only lasts me 2 days).  Anyway switching

can be tricky and everyone responds differently.

Hope that helps.

Alanna 

Sent from my Verizon Wireless BlackBerry

Newbie

   

           

           

     

      Hi, I'm new here. Thought I'd chime in. I don't get much aleep either.

I've had spinal fusion from C5 to C7 with a plate and screws. I now have

stenosis as well.  I take tizanidine(best muscle relaxer on earth in my

opinion), 4 mg. 1/2 a pill during the day, a whole one at night. For pain I have

a 50 mg Fentanyl patch and take Vicodin for bleed-through pain. I'm on 15 mg of

Prednisone for breathing problems and the anti-inflammatory properties help--I

know because the lower the dose gets, the more I hurt.  My name's Malissa, and

I'm pleased to meet you all. Thanks for letting me join.

[Guest guest]

,

I have a lot of respect for doctors. I always liked it when they would call and

ask questions @ meds instead of trying to guess.

Thank you for the pics. I haven't looked at them yet because the file was too

big for my phone. I will look at them when I feel better.

I hope your pain is less today.

Alanna

Sent from my Verizon Wireless BlackBerry

Newbie

   

           

           

     

      Hi, I'm new here. Thought I'd chime in. I don't get much aleep either.

I've had spinal fusion from C5 to C7 with a plate and screws. I now have

stenosis as well.  I take tizanidine(best muscle relaxer on earth in my

opinion), 4 mg. 1/2 a pill during the day, a whole one at night. For pain I have

a 50 mg Fentanyl patch and take Vicodin for bleed-through pain. I'm on 15 mg of

Prednisone for breathing problems and the anti-inflammatory properties help--I

know because the lower the dose gets, the more I hurt.  My name's Malissa, and

I'm pleased to meet you all. Thanks for letting me join.

[Guest guest]

hi alanna the fentenyl patch is it like a pain pill donnie

Subject: Re: Newbie

To: Hugs-N-Pain

Date: Tuesday, June 9, 2009, 8:46 PM

Diane,

The ratio is 1 to 20, but switching like that can be more complicated than it

seems. The best thing is to ask an experienced pain doctor and follow their

advice. The methadone is in a fast acting form, whereas the fentanyl is designed

to last 3 days (although it only lasts me 2 days). Anyway switching can be

tricky and everyone responds differently.

Hope that helps.

Alanna

Sent from my Verizon Wireless BlackBerry

Newbie

Hi, I'm new here. Thought I'd chime in. I don't get much aleep either. I've had

spinal fusion from C5 to C7 with a plate and screws. I now have stenosis as

well. I take tizanidine(best muscle relaxer on earth in my opinion), 4 mg. 1/2 a

pill during the day, a whole one at night. For pain I have a 50 mg Fentanyl

patch and take Vicodin for bleed-through pain. I'm on 15 mg of Prednisone for

breathing problems and the anti-inflammatory properties help--I know because the

lower the dose gets, the more I hurt. My name's Malissa, and I'm pleased to meet

you all. Thanks for letting me join.