New to the group

November 12, 2010

I stopped taking Nasonex a month or 2 ago as i ran out and had to wait ages on an ENT appointment, eventually after a few days my nose was not much different although i´ve been taking some low doses of betamethazone tablets with lortadine. Helps a little but still not much smell but way cheaper than buying Nasonex every month. Actually saying that I stopped taking inhalers a long time ago as well but i think the tablets help there as well. Diet helps like staying off coke, Chinese food, dairy products and avoid crisps and dodgy junk food full of mysteries colours and drugs. From: samters [mailto:samters ] On Behalf Of rainchicka22Sent: Tuesday, November 09, 2010 11:46 PMsamters Subject: New to the group Hello All,I am new to this group and boy was I thrilled to find you! I have had Samter's for the last five years and like many of you sometimes I feel like my little bucket of hope has a big hole in the bottom of it. I do not have medical insurance so trying to find something that works has become rather expensive. I have tried everything from alternative therapies to drugs to diet only to continue with the same old problems. It is wonderful to hear about the things that are working for some of you. I'm wondering if it might also be good to post all the things that haven't worked so we can save others from spending unnecessary time and money on those products. I also have two questions: I ran out of Nasonex while on vacation last March and for about a week I actually started feeling better. All of a sudden I could smell and I sounded less stuffy. My mom even commented about it while talking to me on the phone. Then I started getting stuffy again and tried going back on it. Ever since then I seem to become MORE congested when I use it than when I don't. Has anyone else ever become allergic to their nasal spray? I've tried using several other brands with no relief. Also, in the course of the last two years I have gained 40 lbs from all of the steroids I've been on. My face has become very puffy. When I mentioned this to my doctor he didn't seem too alarmed by it. He just told me to start exercising more. Well, I am a runner and I try to exercise between 30 min to 1.5 hrs/day and am still unable to lose weight. Has anyone ever heard of steroid toxicity and how it is treated?Sorry for the long post.Janae

November 12, 2010

Interesting enough most have the polyps removed then desense so whats that all about. Doctors are dodgy car salesmen but sell drugs for pharmaceutical companies, nothing more. From: samters [mailto:samters ] On Behalf Of BannisterSent: Friday, November 12, 2010 10:27 AMsamters Subject: Re: New to the group That is a dreadful excuse for your Dr to give you for not doing desens!!!!!!!!!!!!!!! Your polyps do not have to be bad....your asthma will greatly benefit from desens, and my experience with hives - they were awful pre-desensitisation and have been almost non-existant since. The hives were a really horrible isssue for me, and I was told it was nothing to do with AERD/Samters triad..yet they started when the asthma started and disappeared with desensitisation. I'm sure others have a similar story, so you need to be armed with this info and try again to push for desens. Good luck,Becky From: " aio_cps@... " <aio_cps@...> " samters " <samters >Sent: Fri, 12 November, 2010 13:14:57Subject: Re: New to the group HiI can totally relate!! Have gained from substantial weight as wellWent to dr today to see about desensitizationHe said my polyps aren't bad enough, my asthma not controlled enough and my chronic hives would get worseAlso when I asked him about perhaps needing a low salicylate diet he actually laughed said not aware of such a thing I'm bummed way out!!Sent from my iPhoneOn Nov 9, 2010, at 8:46 PM, " rainchicka22 " <janaeh@...> wrote: Hello All,I am new to this group and boy was I thrilled to find you! I have had Samter's for the last five years and like many of you sometimes I feel like my little bucket of hope has a big hole in the bottom of it. I do not have medical insurance so trying to find something that works has become rather expensive. I have tried everything from alternative therapies to drugs to diet only to continue with the same old problems. It is wonderful to hear about the things that are working for some of you. I'm wondering if it might also be good to post all the things that haven't worked so we can save others from spending unnecessary time and money on those products. I also have two questions: I ran out of Nasonex while on vacation last March and for about a week I actually started feeling better. All of a sudden I could smell and I sounded less stuffy. My mom even commented about it while talking to me on the phone. Then I started getting stuffy again and tried going back on it. Ever since then I seem to become MORE congested when I use it than when I don't. Has anyone else ever become allergic to their nasal spray? I've tried using several other brands with no relief. Also, in the course of the last two years I have gained 40 lbs from all of the steroids I've been on. My face has become very puffy. When I mentioned this to my doctor he didn't seem too alarmed by it. He just told me to start exercising more. Well, I am a runner and I try to exercise between 30 min to 1.5 hrs/day and am still unable to lose weight. Has anyone ever heard of steroid toxicity and how it is treated?Sorry for the long post.Janae

November 12, 2010

Remember doctors can get struck off if they donÂ´t provide you with the proper Â¨drugsÂ¨ from their little books or surgery. From: samters [mailto:samters ] On Behalf Of elizabeth lSent: Friday, November 12, 2010 10:31 AMsamters Subject: Re: New to the group Its funny how we think Doctors can cure and know everything. There was a comment the other day how a doctor was saying the person was self diagnosed . Hello Doctors of this century we are very well informed , thank you internet, perhaps more than they are just because we have the time.Lets remember these are human beings just like we are only they have a chip on their shoulder. Makes me so angry that you would see a doctor and be well informed and that doctor would just laugh not even considering the idea, Sorry just venting From: " aio_cps@... " <aio_cps@...> " samters " <samters >Sent: Fri, November 12, 2010 8:14:57 AMSubject: Re: New to the group HiI can totally relate!! Have gained from substantial weight as wellWent to dr today to see about desensitizationHe said my polyps aren't bad enough, my asthma not controlled enough and my chronic hives would get worseAlso when I asked him about perhaps needing a low salicylate diet he actually laughed said not aware of such a thing I'm bummed way out!!Sent from my iPhoneOn Nov 9, 2010, at 8:46 PM, " rainchicka22 " <janaeh@...> wrote: Hello All,I am new to this group and boy was I thrilled to find you! I have had Samter's for the last five years and like many of you sometimes I feel like my little bucket of hope has a big hole in the bottom of it. I do not have medical insurance so trying to find something that works has become rather expensive. I have tried everything from alternative therapies to drugs to diet only to continue with the same old problems. It is wonderful to hear about the things that are working for some of you. I'm wondering if it might also be good to post all the things that haven't worked so we can save others from spending unnecessary time and money on those products. I also have two questions: I ran out of Nasonex while on vacation last March and for about a week I actually started feeling better. All of a sudden I could smell and I sounded less stuffy. My mom even commented about it while talking to me on the phone. Then I started getting stuffy again and tried going back on it. Ever since then I seem to become MORE congested when I use it than when I don't. Has anyone else ever become allergic to their nasal spray? I've tried using several other brands with no relief. Also, in the course of the last two years I have gained 40 lbs from all of the steroids I've been on. My face has become very puffy. When I mentioned this to my doctor he didn't seem too alarmed by it. He just told me to start exercising more. Well, I am a runner and I try to exercise between 30 min to 1.5 hrs/day and am still unable to lose weight. Has anyone ever heard of steroid toxicity and how it is treated?Sorry for the long post.Janae

November 15, 2010

You need a new doctor - the nasals should be free of polyps (or as clear as

possible) prior to aspirin desens.

I would drop your doctor like a hot potato.

>

> Hello All,

>

> I am new to this group and boy was I thrilled to find you! I have had Samter's

for the last five years and like many of you sometimes I feel like my little

bucket of hope has a big hole in the bottom of it. I do not have medical

insurance so trying to find something that works has become rather expensive. I

have tried everything from alternative therapies to drugs to diet only to

continue with the same old problems. It is wonderful to hear about the things

that are working for some of you. I'm wondering if it might also be good to post

all the things that haven't worked so we can save others from spending

unnecessary time and money on those products.

>

> I also have two questions: I ran out of Nasonex while on vacation last March

and for about a week I actually started feeling better. All of a sudden I could

smell and I sounded less stuffy. My mom even commented about it while talking to

me on the phone. Then I started getting stuffy again and tried going back on it.

Ever since then I seem to become MORE congested when I use it than when I don't.

Has anyone else ever become allergic to their nasal spray? I've tried using

several other brands with no relief.

>

> Also, in the course of the last two years I have gained 40 lbs from all of the

steroids I've been on. My face has become very puffy. When I mentioned this to

my doctor he didn't seem too alarmed by it. He just told me to start exercising

more. Well, I am a runner and I try to exercise between 30 min to 1.5 hrs/day

and am still unable to lose weight. Has anyone ever heard of steroid toxicity

and how it is treated?

>

> Sorry for the long post.

>

> Janae

>

> <http://www.bandoo.com/wp/ie.php?plg=ie & ad2=0 & subs= & elm=sign>

>

November 15, 2010

I was desensitized in San diego the problem was that i developed severe gastritis and that was the end of that the doctor in nyack ny is very good actually he was my allergist and is very well informedFrom: lynn b <itsrosie30@...>samters Sent: Mon, November 15, 2010 8:45:33 AMSubject: Re: New to the group

You need a new doctor - the nasals should be free of polyps (or as clear as possible) prior to aspirin desens.

I would drop your doctor like a hot potato.

>

> Hello All,

>

> I am new to this group and boy was I thrilled to find you! I have had Samter's for the last five years and like many of you sometimes I feel like my little bucket of hope has a big hole in the bottom of it. I do not have medical insurance so trying to find something that works has become rather expensive. I have tried everything from alternative therapies to drugs to diet only to continue with the same old problems. It is wonderful to hear about the things that are working for some of you. I'm wondering if it might also be good to post all the things that haven't worked so we can save others from spending unnecessary time and money on those products.

>

> I also have two questions: I ran out of Nasonex while on vacation last March and for about a week I actually started feeling better. All of a sudden I could smell and I sounded less stuffy. My mom even commented about it while talking to me on the phone. Then I started getting stuffy again and tried going back on it. Ever since then I seem to become MORE congested when I use it than when I don't. Has anyone else ever become allergic to their nasal spray? I've tried using several other brands with no relief.

>

> Also, in the course of the last two years I have gained 40 lbs from all of the steroids I've been on. My face has become very puffy. When I mentioned this to my doctor he didn't seem too alarmed by it. He just told me to start exercising more. Well, I am a runner and I try to exercise between 30 min to 1.5 hrs/day and am still unable to lose weight. Has anyone ever heard of steroid toxicity and how it is treated?

>

> Sorry for the long post.

>

> Janae

>

> <http://www.bandoo.com/wp/ie.php?plg=ie & ad2=0 & subs= & elm=sign>

>

February 8, 2011

Hi Judy,

I would first recommend you find a scoliosis specialist. I have some

websites that would be good for you to check out. Some of them list doctors in

your area that specialize.

http://www.scoliosis-assoc.org/

http://www.spinemd.com/about-us/

http://www.srs.org/

http://www.fixscoliosis.com/forum.php

http://www.scoliosis-support.org/

http://www.scoliosissystems.com/?gclid=CLfv_5z1l6YCFY9x5QodXUwFmw

http://www.spineuniverse.com/

http://www.bonati.com/discussion/

http://www.scoliosis.org/forum/

http://www.sdscoliosis.com/

http://www.iscoliosis.com/

http://www.scoliosisjournal.com/

http://livingtwisted.wordpress.com/

http://www.brainandspine.org.uk/helpline/neurology_in_the_news/chronic_back.html

http://www.mypainspecialist.com/index.html

I bet you didn't know there were so many sites. I was amazed when I started

researching. I was diagnosed in 1965. I've had over 10 operations and in 1999

I had to retire due to the back pain. There is no more surgical intervention at

this time but I did find a pain management doctor and start a series of

injections tomorrow.

I understand your frustration with dealing with pain. I've used a Duragesic

(Fentanyl) patch and started a new oral med called Nuycynta.

I wish you the best of luck and if you ever need to chat or something let me

know.

Janie

>

> I just found out friday I have scoliosis of the spine. I knew I had osterposis

I thought that way why i humped over. Plus I fell about 14 months ago and

fractured my back. The fracture is healing but arthritis set in.

>

> I am in pain all the time. I can take the strongest pain meds I will hurt in

about four hours. I don't know much about the disease. I am 51 does it get

worse? Is there anything good for comfort?

>

> any suggestions about the disease would be appreciated.

>

> Judy

>

June 4, 2011

Hi Doug:

Menieres finally finished off my hearing in 2003. Hearing aids had stopped

helping so I got a cochlear implant as fast as I could--I didn't like

communicating by notepad. It was a miracle to be able to have a conversation

with my wife and kids again.

For me it's like hearing through a microphone, but it's hearing. I haven't

worked at trying to make music sound musical and it doesn't sound like it did

when hearing aids where helping me. The decision for me was easy because both

ears had become useless.

Left me know if you have other questions.

Hal

New to the Group

Hello, All.

I lost the remainder of my hearing a few weeks ago (Meniere's). I read the

Wikipedia article on implants, but I don't think it's a reliable source. I'm

trying to decide if they're for me. How should I go about making the decision?

What does the world sound like through implants?

Regards,

Doug

June 5, 2011

Doug - Meniere's got most of my hearing too. My left ear has been completely

deaf for 4 years and the right ear has a little bit of hearing, but is very

poor. The only way I can understand anyone is if they are within 5 feet or so

and I can see their face.

I got a CI (activated May 16, 2011) and it is making a huge difference in my

life. Being deaf meant becoming invisible for me. I was getting left out of

most of my family life because it was very difficult to communicate me and much

easier to ignore me. I've only been activated for 20 days and the sound is

faint and robotic, but ti's already making a huge difference in being able to

comprehend what is being said.

I would think it would at least be worth a look.

Bob W

>

> Hello, All.

>

> I lost the remainder of my hearing a few weeks ago (Meniere's). I read the

Wikipedia article on implants, but I don't think it's a reliable source. I'm

trying to decide if they're for me. How should I go about making the decision?

What does the world sound like through implants?

>

> Regards,

> Doug

>

June 6, 2011

Doug,

I lost most of my right ear to Meniere's over 20 years ago but my left was 100%.

When my left ear went about 2-3 years ago it was very bad. I managed to cope

with some new high tech HA's which cost me $8000. Although I had residual

hearing in both ears, the left kept getting worse. a neighbor with a CI told me

I should get tested. Although all of the hearing professionals on my 'team' had

told me only bad things about CI's, she told me her they were completely wrong.

The short story is I was implanted about 6 months later in my left ear. It has

been nothing short of remarkable. I can hardly wait to get my right ear done as

well. My surgeon tells me that in the field of medical implants the CI is the

most successful of all.

My only advice to you would be to do your own research. Don't believe a word you

hear from all the professionals who neither wear a CI or work with CI patients.

I was amazed to find out a rare it is to have a CI. The only reason I can find

relates to the huge cost of the device. After 30+ years of CI's it is hard to

understand how they are still so expensive. There is no justification for the

processor to cost much more than a good digital HA. I cannot imagine why the

actual implant should cost $25-35,000.

If the price was much lower, the numbers would increase dramatically, just like

all other high tech devices. They need more competition.

Good luck.

Lawrence Levin

June 6, 2011

Many thanks to all who have taken to helping me out.Â I truly appreciate it.Â

I had no idea so many folks have Meniere's.Â I was given to understand that it

was kind of a rare thing.

Â

Would you say that the sound quality of a CI is like that of an AM transistor

radio?

Â

Of what does the screening process consist?

Â

What is the recovery time like? Painful?

Â

Thanks, again, for all your help.

Â

Doug

From: Lawrence Levin <lawrencerlevin@...>

Subject: Re: New to the Group

" CI Hear " < >

Date: Monday, June 6, 2011, 10:44 AM