first post

[Guest guest]

Pam,

The amount of pain and the quality of life factor should be ways you can

judge when you should get a hip replacement. I am 56 and have had 4 hip

replacements, all on the left side and am looking at getting the right hip

done someday soon. From my experience I would go for pain management first

as hip replacements don't last all that long and you will be looking at a

revision or 2 in your future. Also, if you are a good candidate for a

resurfacing, go for that because you will lose less bone, making revisions

easier. I have so little bone left in my left side it's scary. When my

surgeon had to revise my hip socket last year he said he wasn't sure we were

going to have enough of my own bone to do the work I needed. By sheer luck

he did, but the downside is that the bone growth he wanted didn't occur and

that makes the next revision even more tenuous.

I don't want to scare you, but I wish someone had told me what I'd be facing

in the future when I had my first hip replacement at the age of 33. The only

thing I can hope for is that they'll come up w/ something that can help me

when my left hip needs done again. Of course you are in your 50s, almost a

full 20 years ahead of the game compared to me.

I had one of those cortisone shots just before Christmas. I was very afraid

of the pain since I'd had a series of them in my left knee and they were

just awful. The hip wasn't quite as bad, but I still wish they'd sedated me.

I am still getting relief from the shot although I am having the referred

pain in my knee and have some major twinges now and then. I'm trying to

gather up some sick days so I can get my hip done, but I think I'll ask for

one more shot before I go in for surgery. My quality of life is down. It's

very hard to do steps (my left leg never got strong . . . my fault because

I'm not good at doing the exercises w/o a PT script) and I have 30 from the

street to my apartment. I used to walk everywhere and now I hate to walk

although I can put in a mile if it is necessary. My poor dog is the one who

really suffers because I can no longer take her to the dog park where she

can run w/ her friends.

Hip replacements are one of the marvels of modern medicine and I'm grateful

they can be done. I'd have been in a wheelchair long ago if they didn't

exist and in incredible pain no doubt. What we really need is a good pain

reliever that is not addictive and that continues to work consistently. The

narcotics I've been given in the past would work for only a few days before

I'd need an increase in dosage or an entire change of drug.

Pat

PS When I asked my doctor when I should get my right hip done he told me

" You'll tell us. " Don't let a doctor push you into it.

> Hi. I am a 52 year old female. I went to my doctor and he said that I

> have arthritis in my hip which I figured out because of the pain. My

> question is how do you know when it's time for a THR or do you let the

> doctor advise by your symptoms?

[Guest guest]

Hi, Pam!

I had a RTKR, not a hip, but the decision to schedule that surgery is

one we've all had to make.

I'm 53, and I didn't want the rest of my life to be spent in pain. I

could even hear the bone on bone grinding of the femur against the

tibia, not to mention feeling the " crunchies " every time I moved the

knee.

First, I was given a steroid injection under the kneecap. A month

later, the pain wasn't as great, but still there and bothersome.

Next I was given a series of 5 weekly injections of Supartz (similar

to Synvisc)which was supposed to get me 6 months of relief. Well, I

didn't feel I got that relief, but 6 months later when I started to

feel " icepicks " in the knee, I knew 1) that I HAD gotten some relief,

and 2)it was time to schedule the surgery. No matter if I was

sitting, standing, walking, lying down, etc., it was always

the " icepicks " .

Sure, I was apprehensive before surgery, and the first 2 weeks were

difficult (and the DH really came through with flying colors). Today,

the pre-surgery pain is totally gone. I'm now 7 weeks post surgery

and life is SO much better. I still have 6 weeks left on PT, and they

tell me I'm progressing well. I was able to resume driving last

week, and it was as if I'd not had 6 weeks away from it.

If my left knee decides to " go south " , I won't hesitate to schedule

surgery for it. Bottom line, if the pain in your hip has you waking

up each morning with dread of facing the pain all day, if the pain is

intruding into each and every minute of your day, it's time to ask

the surgeon to make the arrangements.

Good luck with your hip!

Regards,

Robin in NWFlorida

---

" Pam " <mazzuch> wrote:

>

> Hi. I am a 52 year old female. I went to my doctor and he said

> that I have arthritis in my hip which I figured out because of the

> pain. My question is how do you know when it's time for a THR or

> do you let the doctor advise by your symptoms? <snip>

[Guest guest]

Hi Pat,

I can't agree with you more. When I hear people say they have a hip

designed to last a lifetime I cringe. Do doctors really tell people that?

My decision about my first hip was made on flawed information. The doctor

had said you can get 30 years out of a hip and I was in my 30's at the time.

30 years was a lifetime to me. I took what he said to mean hips lasted 30

years. So I figured next hip I would get I would be in my 60's (one foot in

the grave age) and they will have better processes and materials by then. I

wouldn't need another hip because there was no way I would live to be in my

90's.

After my first hip, at my 12 month check up the Doctor was horrified at the

wear. My hubby and I had always been bushwalkers and I was bushwalking

again. I explained that I didn't do long walks and the longest walk I had

been on was 12 klm. He turned round disgusted at me and said " And we were

hoping you would get 10 years out of this hip, at this rate you will be

lucky to get 5. "

I was gobsmacked! I replied " What ever happened to 30 years? You told me

the hip would last 30 years! "

I'm pretty sure that I would have made the same decision even given a time

span of 10 years. Life was pretty miserable and I was in a wheelchair

before I got the surgery. But sometimes in the wee small hours, when I am

in pain and angry at the world I get angry that I wasn't given a more

realistic time frame.

That is why people like Pat and I sometimes try to tell people before they

have their surgery. It mightn't change a thing, except a mindset afterwards

knowing you made the decision with full knowledge.

Aussie Margaret

RTHR 1990 revised 2004

PS: My hubby still walks at least 20 klm every weekend. I can't walk round

the block without my stick.

Re: First Post

| Pam,

<snipped>

| I don't want to scare you, but I wish someone had told me what I'd be

facing

| in the future when I had my first hip replacement at the age of 33. The

only

| thing I can hope for is that they'll come up w/ something that can help me

| when my left hip needs done again. Of course you are in your 50s, almost a

| full 20 years ahead of the game compared to me.

<snipped>

[Guest guest]

--- Margaret wrote:

> I can't agree with you more. When I hear people say they have a hip

> designed to last a lifetime I cringe. Do doctors really tell people that?

It seems they still do, and it seems it still drives some of us crazy. Me

included! I probably sound like a broken record, every time I pop up and

say " there are no guarantees, and there's more involved than the wear

on the metal bits " .

How long does a hip last is a classic " how long is a piece of string "

question. It lasts as long as it lasts.

Like you, Margaret, I walked my first two hips to pieces... though on mine

the metal parts and the plastic cup liner were still intact, the joins

between body and implant are what failed. An active 20/30/40 year old is

almost certainly going to get through a replacement faster than an active

70/80 year old, because how you define " activity " and " normal " is relative

to age.

The accuracy of the numbers for replacement longevity for younger

patients is improving, as there are more and more of us to count

compare and study. But if anyone tells you you'll get 20 or 30 years, or

" a lifetime " of use from a replacement joint, please take that with a more

than a healthy pinch of salt.

I agree wholeheartedly about making your decisions based on all the

information, not on the shiniest possible version. Know the risks, know the

options, be as honest as possible with yourself about your current state

and quality of life and what you want and expect...

I started the replacement cycle in my mid-twenties, and I was lucky in that

my sugeon then gave me the full info and the full truth about being unable

to predict how long I'd get, though even he was surprised by just how short

each hip's lifespan was (I ended up having three regular THRs on one side

in 11 years. The third one became infected, and two weeks ago I had a

proximal femoral replacement instead, because I lost too much thigh bone

for another THR).

I am pretty sure I'd have made the same decision, even knowing what would

happen over the next 13 years. Though if I could have a clear decade without

surgery, I'd be grateful. But I don't think I'd go back and change my decision

if

I could. Because the years I did get on those hips? They were worth it.

Oh, how every last walking, dancing, travelling mile was worth it.

RTHR: 1994, revised 1999, 2005, 2007

p.s. Margaret, it breaks my heart that you can't go bushwalking any more.

Can you manage at all with a pair of sticks, or is the pain/weakness/frustration

too much to leave any pleasure in the outing? Losing that ability to do the most

cherished things is a beast.

>

> My decision about my first hip was made on flawed information. The doctor

> had said you can get 30 years out of a hip and I was in my 30's at the time.

> 30 years was a lifetime to me. I took what he said to mean hips lasted 30

> years. So I figured next hip I would get I would be in my 60's (one foot in

> the grave age) and they will have better processes and materials by then. I

> wouldn't need another hip because there was no way I would live to be in my

> 90's.

>

> After my first hip, at my 12 month check up the Doctor was horrified at the

> wear. My hubby and I had always been bushwalkers and I was bushwalking

> again. I explained that I didn't do long walks and the longest walk I had

> been on was 12 klm. He turned round disgusted at me and said " And we were

> hoping you would get 10 years out of this hip, at this rate you will be

> lucky to get 5. "

>

> I was gobsmacked! I replied " What ever happened to 30 years? You told me

> the hip would last 30 years! "

>

> I'm pretty sure that I would have made the same decision even given a time

> span of 10 years. Life was pretty miserable and I was in a wheelchair

> before I got the surgery. But sometimes in the wee small hours, when I am

> in pain and angry at the world I get angry that I wasn't given a more

> realistic time frame.

>

> That is why people like Pat and I sometimes try to tell people before they

> have their surgery. It mightn't change a thing, except a mindset afterwards

> knowing you made the decision with full knowledge.

>

> Aussie Margaret

> RTHR 1990 revised 2004

>

> PS: My hubby still walks at least 20 klm every weekend. I can't walk round

> the block without my stick.

[Guest guest]

Pam, as some have said you will " know " when it is time to have the

surgery. If you have just been diagnosed you need time to digest the

information and make decisions. The most important thing for you to

do is what you are already doing. You must become an advocate for

your own body. Research all of your options carefully, prepare

yourself mentally and physically, and then schedule your surgery

date. It was almost three years from the diagnosis until surgery for

me and for the first two years I was still pretty active and pain

free. Then the downward slide began and it was rapid as my surgeon

had told me it would be. After research and careful consideration I

opted for a Conserve Plus hip resurfacing instead of a THR. I had my

surgery in Feb of this year. I am 48 and female. The chances of

having a revision in my lifetime are great and cutting off part of

my femur when I am going to need it later just did not make any

sense to me. No one can tell you what you must do but not being an

educated and informed patient will put you at a disadvantage. Good

luck on your quest.

Deb

>

> Hi. I am a 52 year old female. I went to my doctor and he said

that I

> have arthritis in my hip which I figured out because of the pain.

My

> question is how do you know when it's time for a THR or do you let

the

> doctor advise by your symptoms? I also get bursitis in my good

hip

> that seems to come and go. I had a cortisone shot in it last year

which

> really helped, but it was scary. Right now he has put me on

Daypro and

> told me to take it easy for a few weeks with the exercising

(walking on

> the treadmill). The doctor said there could be a THR in my future

but

> it's hard to tell for sure. He is a rhuemotologist. Do I just

try to

> manage the pain or should I be aggressive and go for one. The

pain

> comes and goes, but something is always there and I can't put my

shoes

> on. I guess my question is what make one decide to go for the

THR. Do

> you have to wait until the pain is simply unbearable? Thanks for

the

> answers. I'm new to all of this. Pam

>

[Guest guest]

, I don't know where you live, but most big cities have County Hospitals and County Health Clinics where anyone can go for medical help. For example, I live near Seattle and Haborview Hospital is where I went for help when I did not have health insurance. Ask around, talk about it to friends and neighbors. C'toma can be fatal if left untreated. Hugs to you, Lori

In a message dated 11/13/2007 6:03:03 P.M. Pacific Standard Time, psmorris@... writes:

Hi Cholesteatoma is not like cancer so there isn't much chance it would spread to other body organs via your blood stream. It doesn't need move very far, it can already do maximum damage located exactly where it is inside your skull. The symptoms you describe are serious and left untreated they will get worse and even more disabling. Not having surgery is not an option because the longer you leave it the greater the risk of potentially lethal cranial complications ie. brain abcess or meningitis. I don't how you go about it without medical insurance but somehow you have to see a ENT consultant as soon as possible.PhilHello my name is . I've had three operations on mycholesteatoma. My mastoid bones were removed when the cholesteatomainfected them. My doctors replaced my mastoid bones with plastic onesbut in the years since they have done this hearing from that ear onlyoccurs spradically. I have not seen the doctor in reference to mycholeteatoma in about two years now due to lack of insurance andfinances. I am positive that it is once again back due to the smellcoming form my ear (smells like road kill), the drainage coming fromit (gray in color), the swelling around my ear, pain in my neck andhead surrounding my ear, and my constant dizziness. I am miserable allof the time and have and am having a hard time with employmentcurrently (lost last job due to days missed due to constant dizzinessand spending days in the bed unable to move around). I do not knowwhat I should do I do not want to be cut on again (having my earcompletely removed from the side of my head has not been the bestexerpiances of my life) but my girlfriend is afraid that if I do notget another surgery that the cholesteatoma could spread to other parsof my body not just my ear. Has anyone else had a case like this?Has anyone been able to overcome the c-toma?

See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi

It sounds like it could be one that you were born with and has been fairly

dormant up until now - that would explain why you haven't had any other kind

of ear infections. Did they say if it might be congential? What kind of

doctors are you seeing and how do they plan on treating you.?

Phil

Hey ya'll my name is and I was diagnosed with a c-toma about

four months ago, I was diagnosed without having any symptoms it was

found by accident while trying to determine the source of my miigranes

and vision loss. The thing I am worried about is that my doctors do

not seem to know how I got the c-toma because i was never sick as a

child and never han an ear infection,which is supposedly how most

people develop them. I am trying to graduate college this spring but

for some reason I keep losing my vision and hearing, only it comes

back in about an hour. The doctors do not seem to think it is realted

and told me there was no need to go the office. Has anyone else had

anything like this happen before and if so what should I do? I think I

am at the point I need personal advice to make me feel more

comfortable with having a c-toma because the docotors talk over my

head and just cause me to worry twice as much. Any opinions or advice

is welcomed I wold really appreciate it.

Thank Ya'll

[Guest guest]

Hi Phil, I am seeing a neurologist and an ENT, they say that we are going to simply do routine mri's and ct's every six months to monitor the growth. They did not say if it was congenital or if I possiably was born with it. That was a great concern for my family because my father suffered from an extremly rare type of brain tumor. The thing i am having the most trouble with is I think i am now starting to have symptoms but everyone thinks that it is just my imagination running wild, and the docotrs are expensive for an imagination and not a real problem. Phil <psmorris@...> wrote: Hi It sounds like it could be one that you were born with and has been fairly dormant up until now - that would explain why you haven't had any other kind of ear infections. Did they say if it might be congential? What kind of doctors are you seeing and how do they plan on treating you.?PhilHey ya'll my name is and I was diagnosed with a c-toma aboutfour months ago, I was diagnosed without having any symptoms it wasfound by accident while trying to determine the source of my miigranesand vision loss. The thing I am worried about is that my doctors donot seem to know how I got the c-toma because i was never sick as achild and never han an ear infection,which is supposedly how mostpeople develop them. I am trying to graduate college this spring butfor some reason I keep losing my

vision and hearing, only it comesback in about an hour. The doctors do not seem to think it is realtedand told me there was no need to go the office. Has anyone else hadanything like this happen before and if so what should I do? I think Iam at the point I need personal advice to make me feel morecomfortable with having a c-toma because the docotors talk over myhead and just cause me to worry twice as much. Any opinions or adviceis welcomed I wold really appreciate it.Thank Ya'll

Never miss a thing. Make your homepage.

[Guest guest]

Hi :

I've never heard of just monitoring a c-toma for growth. Plus, any

surgeon experienced with c-tomas will tell you that MRI's and CT

scans do not reveal the whole truth about what is going on inside.

Surgery is the only way to deal with a c-toma, and every time the

surgeon is not certain what will be needed until they go in via

surgery.

You say you're seeing a neurologist and an ENT, but there is a

specialty that combines the best of both worlds - neurotologist. I

strongly recommend you find a neurotologist to get another opinion.

If you let the group know where you are located, often times someone

can suggest an excellent neurotologist nearby. To keep doing MRI's

and CT scans does sound very expensive to me. I would prefer to just

have someone go in and deal with it directly!

Take care,

Dave

>

> Hi

>

> It sounds like it could be one that you were born with and has been

fairly

> dormant up until now - that would explain why you haven't had any

other kind

> of ear infections. Did they say if it might be congential? What

kind of

> doctors are you seeing and how do they plan on treating you.?

>

> Phil

>

> Hey ya'll my name is and I was diagnosed with a c-toma about

> four months ago, I was diagnosed without having any symptoms it was

> found by accident while trying to determine the source of my

miigranes

> and vision loss. The thing I am worried about is that my doctors do

> not seem to know how I got the c-toma because i was never sick as a

> child and never han an ear infection,which is supposedly how most

> people develop them. I am trying to graduate college this spring but

> for some reason I keep losing my vision and hearing, only it comes

> back in about an hour. The doctors do not seem to think it is

realted

> and told me there was no need to go the office. Has anyone else had

> anything like this happen before and if so what should I do? I

think I

> am at the point I need personal advice to make me feel more

> comfortable with having a c-toma because the docotors talk over my

> head and just cause me to worry twice as much. Any opinions or

advice

> is welcomed I wold really appreciate it.

>

> Thank Ya'll

>

>

>

>

>

>

>

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

> Never miss a thing. Make your homepage.

>

[Guest guest]

I am seeing a neurologist and an ENT, they say that we are going to simply do routine mri's and ct's every six months to monitor the growth. They did not say if it was congenital or if I possiably was born with it. That was a great concern for my family because my father suffered from an extremly rare type of brain tumor. The thing i am having the most trouble with is I think i am now starting to have symptoms but everyone thinks that it is just my imagination running wild, and the docotrs are expensive for an imagination and not a real problem.

Hi

I do have another question if you don't mind. Did your doctors tell you where the cholestoma is located? The reason I'm asking is that most ctomas are acquired and located in the middle ear but occasionally we come across people who have other parts of the temporal bone. Specifically I was thinking of one type which I think is called cerebellopontine angle cholesteatoma. This means it's a little further in than the middle ear, roughly where the auditory and the facial nerve run side by side. A ctoma in a location like that would certainly be congenital, meaning it was formed from skin cells which were trapped in the wrong place while your head was developing in the womb.It would also be sterile ie no bacteria would have infected and therefore you wouldn't have any of the overt problems like ear drainage. However it would certainly cause you to have headaches and possibly visual problems too. If you did have a ctoma in that location it would probably be slow growing and difficult to approach which account for reason your doctors have chosed to monitor it for the time being. Although I'm sure they will have to use surgery sooner or later.That kind of problem is more in the realm of neurotology than otology. Do you have any other symptoms at all? Dizziness for instance.

Phil

[Guest guest]

Hello

Janet and welcome to our forum. I hope you will get all the support you need.

There is plenty to read in the FILES and LINKS on this forum and also on our

web site www.tpa-uk.org.uk but if you

have any questions just shout.

You

will have no doubt noted this forum has some extremely heavy traffic, so if you

opted to receive Individual Emails when you registered, you may wish to

reconsider and change your option to receiving either Daily Digests (where you

get up to 25 messages in one email) or opt for Special Notices where you can

read and write messages from the web site. You can do this from the Home Page

of this forum by clicking 'Edit Membership' above the broad dark green bar near

to the top.

Being

on such a relatively low dose of levothyroxine for so long is probably your

problem. Your September blood tests show that you need this increasing. If your

GP refuses to increase it, then ask for a referral to an endocrinologist. Your

ferritin level is FAR too low. It should be in the region of 70 to 90 for a

woman in a reference range of 14 to 186. You were below the bottom of the

reference range. At 24 it is still far too low and perhaps you might be

better by having iron injections. Your GP simply cannot allow this to go on as she

is probably causing you great harm - and yes, I mean that. Also your thyroxine

cannot be absorbed when your ferritin level is so low. Did your GP test your

B12. If not, it is imperative this is now done. You should also ask to for your

zinc, Vitamin D, magnesium and copper levels to be checked also. You have a

million miles to go before talking about over medication with iron - that is a

whole new ball game. You need to be treated to get you to at least 70.

Damn

and blast the fact that your doctor is happy - she obviously doesn't know what she

is doing and she doesn't care. This is YOUR health and you should change this

idiot to a doctor who does care about their patients and has a little more

knowledge.

Because

the majority of doctors have been badly trained in the diagnosis and treatment

of hypothyroidism, they are happier just going by the results of the thyroid

function blood tests. If these are within the normal range, they tell you there

is no problem and forget completely about your symptoms. However, if your TFT's

still remain within the reference range - never mind whether they are at the

top, middle or the very bottom, and you complain of symptoms, they will give

you prescriptions for each of the symptoms you mention hoping either they, or

you, will go quietly away. This will NOT do.

You

need to write to this GP (always better on paper) asking for a referral to an

endocrinologist. Set out your symptoms, your basal temperature for 4 to 5 days

before you get out of bed. List your medications and supplements and when they

were last increased and whether you had any effect for the better. Tell her you

would like a second opinion so you can get a thorough clinical examination as

you are not prepared to carry on in the way you are being treated, and tell her

that you know of the association between low ferritin and hypothyroidism (here,

go to our web site www.tpa-uk.org.uk -

click on 'Hypothyroidism' then click on 'Associated Conditions' and on the page

that opens, scroll down to 'Haemochromatosis' and on the page that opens, read

about the effect of low and high ferritin - your GP might like a copy). You can

google up 'cholesterol hypothyroidism' to get evidence to show your GP she is

wrong about this too, and this is the reason you need a referral to an endo.

At

the bottom of the letter, ask for it to be placed into your medical notes, and

send a copy to the Head of practice. If you want to know what we recommend

about seeing an endocrinologist for the first time, go to our Files and scroll

down until you see " First Visit to Endocrinologist " . There are lots

of suggestions there for you.

I

would give the endocrinologist a go first, and if you get nowhere, then see Dr

P.

Luv -

Sheila

My question is: what would you recomend I could do as a next step -

ask to be rereferred to an endocrinologist perhaps or see some one

like Dr Peatfield?

Thanks

Janet

[Guest guest]

Hi Sheila, Many thanks for your response, lots to think about and work

through.

Could anyone recommend an endocrinologist (or a GP) who is sympathetic

and knowledgable about treating an underactive thyroid (have already

done the diabetes clinic route)- I live just west of London, though

would be happy to travel.

Thanks

Janet

> I would give the endocrinologist a go first, and if you get nowhere,

then

> see Dr P.

>

>

>

> Luv - Sheila

>

> My question is: what would you recomend I could do as a next step -

> ask to be rereferred to an endocrinologist perhaps or see some one

> like Dr Peatfield?

> Thanks

> Janet

>

[Guest guest]

Hi janet

I have sent you a list of London doctors who have been recommended to me

as being 'good' doctors in that they recognise some people do not do

well on levothyroxione alone and will recommend T4/T3 combination

therapy, either synthetic or natural. I personally believe that any

doctor in this day and age who will do this must have some idea of what

they are doing, rather than slavishly following the doctrines of such

organisations as the British Thyroid Association - who seriously, do NOT

know what they are doing when it comes to diagnosing and treating

hypothyroidism.

However, I know nothing of any of these doctors bed-side manner. Hope

there is one here that will give you the help you need. Let us know if

there is.

Luv - Sheila

> Could anyone recommend an endocrinologist (or a GP) ...I live just

west of London, though

> would be happy to travel.

>

> Thanks

> Janet

[Guest guest]

Here are my favorite established critter groups, with a brief note about each:

finding1cure -- Sharing re morgellons and other critters; very active group

bird mites -- Sharing re bird mites only; very active and popular

critterfiles -- Sharing and extensive library of protocols

BOinfoStg and skinickies -- Sharing, health, spirituality, libraries

invisiblebitingmites -- Sharing and extensive library of protocols

bodybugs -- Sharing and photographs. Notes on groups with libraries: it is useful to join and use all library groups,as each is organized differently and has different sets of protocolsand other information. With love, KJ >> Hi,> > Just joined this group the other day.> > Guess it's nice to share, and have support for this malady.> > If this doesn't drive you crazy, nothing will.> > I'm sorry to say, I've tried everything I can, and still the crawling, itching and biting continues (even as I type these words).> > They multiply so fast, you can't keep up with them.> > If I don't vacuum at least every other day, I find it hard to breathe the air in my apartment. I assume it's their fecal matter infiltrating the environment.> > Spent most of the day cleaning all clothes and linens, vacuuming and spraying borax solution everywhere.> > They get in my mouth when I sleep at night (and I need to take sleeping pills in order to crash for 2-3 hours).> > This is no way to live.> > -D.>

[Guest guest]

Hi Dennis Welcome to our group.It is a difficult way to live and perhaps some of

the suggestions and support of this group will make it easier for You.It has for

me and I've only been here for about 6 months.I can relate to Your discomfort I

take something to sleep also...Anyway see for Yourself I am a newbie pretty

much..true the cleaning can be intensive..alot of these " experienced

members " have alot of kool suggestions...My opionion only but i think this is one

of the best groups for our malady...Anyway I'm glad Your here.Hope you have a

better sleep tonite.Rose

--- cerph1000@... wrote:

From: " Dennis " <cerph1000@...>

bird mites

Subject: First Post

Date: Wed, 05 Aug 2009 02:15:58 -0000

Hi,

Just joined this group the other day.

Guess it's nice to share, and have support for this malady.

If this doesn't drive you crazy, nothing will.

I'm sorry to say, I've tried everything I can, and still the crawling, itching

and biting continues (even as I type these words).

They multiply so fast, you can't keep up with them.

If I don't vacuum at least every other day, I find it hard to breathe the air in

my apartment. I assume it's their fecal matter infiltrating the environment.

Spent most of the day cleaning all clothes and linens, vacuuming and spraying

borax solution everywhere.

They get in my mouth when I sleep at night (and I need to take sleeping pills in

order to crash for 2-3 hours).

This is no way to live.

-D.

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

[Guest guest]

Thanks KJ,

I just signed up with the invisiblebiting mites group.

Any help is appreciated.

-D.

> >

> > Hi,

> >

> > Just joined this group the other day.

> >

> > Guess it's nice to share, and have support for this malady.

> >

> > If this doesn't drive you crazy, nothing will.

> >

> > I'm sorry to say, I've tried everything I can, and still the crawling,

> itching and biting continues (even as I type these words).

> >

> > They multiply so fast, you can't keep up with them.

> >

> > If I don't vacuum at least every other day, I find it hard to breathe

> the air in my apartment. I assume it's their fecal matter infiltrating

> the environment.

> >

> > Spent most of the day cleaning all clothes and linens, vacuuming and

> spraying borax solution everywhere.

> >

> > They get in my mouth when I sleep at night (and I need to take

> sleeping pills in order to crash for 2-3 hours).

> >

> > This is no way to live.

> >

> > -D.

> >

>

[Guest guest]

Thanks KJ,

I just signed up with the invisiblebiting mites group.

Any help is appreciated.

-D.

> >

> > Hi,

> >

> > Just joined this group the other day.

> >

> > Guess it's nice to share, and have support for this malady.

> >

> > If this doesn't drive you crazy, nothing will.

> >

> > I'm sorry to say, I've tried everything I can, and still the crawling,

> itching and biting continues (even as I type these words).

> >

> > They multiply so fast, you can't keep up with them.

> >

> > If I don't vacuum at least every other day, I find it hard to breathe

> the air in my apartment. I assume it's their fecal matter infiltrating

> the environment.

> >

> > Spent most of the day cleaning all clothes and linens, vacuuming and

> spraying borax solution everywhere.

> >

> > They get in my mouth when I sleep at night (and I need to take

> sleeping pills in order to crash for 2-3 hours).

> >

> > This is no way to live.

> >

> > -D.

> >

>

[Guest guest]

Thanks Rose- sorry it's taken me so long to respond- haven't been on this site

for a while.

-D.

>

> From: " Dennis " <cerph1000@...>

> bird mites

> Subject: First Post

> Date: Wed, 05 Aug 2009 02:15:58 -0000

>

> Hi,

>

> Just joined this group the other day.

>

> Guess it's nice to share, and have support for this malady.

>

> If this doesn't drive you crazy, nothing will.

>

> I'm sorry to say, I've tried everything I can, and still the crawling, itching

and biting continues (even as I type these words).

>

> They multiply so fast, you can't keep up with them.

>

> If I don't vacuum at least every other day, I find it hard to breathe the air

in my apartment. I assume it's their fecal matter infiltrating the environment.

>

> Spent most of the day cleaning all clothes and linens, vacuuming and spraying

borax solution everywhere.

>

> They get in my mouth when I sleep at night (and I need to take sleeping pills

in order to crash for 2-3 hours).

>

> This is no way to live.

>

> -D.

>

>

>

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

>

>

[Guest guest]

Also, he has never shown any sort of skin lesions. How common is this? I

personally have some light skin issues (mostly just dry scalp and face). My

daughter who has no Arthritis symptoms has had a bad skin patch at the base

of her skull pretty much since birth (she is now 14).

--

R-)

[Guest guest]

I have had this for over 2 years and never showed any signs of psoriasis until

recently where it has appeared on my head.

Celeste

[Guest guest]

I've never had a skin lesion, except for the psoriasis on my scalp. I just

developed this " severe dry, flaky skin on my scalp, which itched like crazy " at

age 45, with the psoriatic arthritis diagnosis at age 52 (but have probably had

it for much longer.)

Dena

[Guest guest]

Hi,

Really unfortunate for a teenager to have this problem.

Try eliminating inflammatory foods to reduce the deterioration.

regrds,

Padmesh

[Guest guest]

I am wondering how many times people who truly have PsA are not

diagnosed because a scalp rash is not diagnosed correctly.

kristina adams <mac@...>

[Guest guest]

Hi, I to was a teenager to, there were not many options back then. Sorry that

you have to go though this so young.

" patrick. " <knew867@...>

[Guest guest]

Welcome to the group! I have a 13 yr old son with PsA he was diagnosed at age

10. He has been doing well on MTX. We have not been on Enbrel.

From everything I have learned about PsA is that it needs to be treated

aggressively. The MTX should have started working by now. You are right to go

on to the next medication.

Feel free to ask questions!