Re: Enlightening

[Guest guest]

In a message dated 2/25/03 6:06:18 AM Central Standard Time,

tatersmom73@... writes:

> Everyone I've talked to seems to think you have

> to have a raging case of psoriasis to have PA. Is this true? From

> what I've seen here, it doesn't seem to be, but I don't know.

Absolutely not. As Ron mentioned in a previous post often the nail pitting is

often the determining factor in diagnosing as PA. If no plaques can be found

on the skin and the nails arent affected your condition will likely be

specified as sero-negative RA. I also follow the Rheumatic board on and

there are many people on that board who have described what certainly sounds

like psoriasis to me, yet they have been diagnosed with RA? As far as

treatment goes it doesnt make much difference but I wonder how misdiagnosis

affects the allocation of research funding. How many drugs were studied and

approved for treating RA that will work for PA if used off label and

uncovered by insurance as result? What % of people diagnosed with S-RA

actually have PA? Do Rhuematologists even ask whether you have psor, your

siblings, parents, kids have psor? Orin

[Guest guest]

>Everyone I've talked to seems to think you have

>to have a raging case of psoriasis to have PA.

My rheumatologist told me that there is absolutely no correlation between

the severity of psoriasis and getting PA. My psoriasis was relatively mild

and well-controlled when I got it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit my personal web site at

http://members.shaw.ca/tljohnson/

[Guest guest]

> This message line has been most enlightening! My sister and I

> both have p, but hers is much worse. My joints ache but hers

> don't, but our Dad,although, not diagnosed, suffered terribly

> from both, the patches and the PA. Everyone I've talked to

> seems to think you have to have a raging case of psoriasis to

> have PA. Is this true? From what I've seen here, it doesn't

> seem to be, but I don't know. Thanks again for the support!!

my doctor had to search high and low to find a spot of psoriasis

(which she did eventually find in my ear canal). other members

of my family did have severe cases of psoriasis so it was an

indication for her to really search for it...needless to say i was

very surprised when she diagnosed pa but feel better to at least

know that its just not a few aches and pains but something far

more serious and painful

[Guest guest]

Sometimes...with PA it's always sometimes...it's the kind of P. If you have toe

and finger nails that are pitted, you may be a good candidate to get PA. Who

knows.

<tljohnson@...> wrote:

>Everyone I've talked to seems to think you have

>to have a raging case of psoriasis to have PA.

My rheumatologist told me that there is absolutely no correlation between

the severity of psoriasis and getting PA. My psoriasis was relatively mild

and well-controlled when I got it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit my personal web site at

http://members.shaw.ca/tljohnson/

[Guest guest]

And I did not even know I had P until I was diagnosed with PA. I have had one

small spot of P on a leg, a bit in my hair that I just thought was a bad case of

dandruff.

[Guest guest]

Hello Lynne,

That is so interesting about your participation in the Civil War

Reenactments. . My husband is a Civil war buff too and we often go to

Gettysburg PA. A few years ago he stood out in 100 degree heat to watch

the reenactments. I wasn't that much of a die hard, I was feeling faint

in that grueling heat. so my sister and I went back to the air

conditioned hotel. Good move on my part I think. Although I was

disappointed to have missed the battle. : )

Those reenactments can put a strain on you for sure. But Reenacting

history is a fascinating hobby I think. That is probably what my husband

will be doing in his retirement. I am from New York and that's where we

live now but he is a Southerner by birthright. He is thinking of buying a

Confederate officers uniform next time we go to Gettysburg. He has a

muzzle loader too and goes target shooting every weekend.

I don't blame you for not jumping into surgery. I have exhausted all my

options so at this point I am seriously entertaining the thought of

making the dreaded call for revision surgery. I think I may be a little

further down the road than you at this point. My pain levels are becoming

high and my quality of life is nill at the moment. . I have been a

hold out for about 5 years since I was diagnosed with flatback. I had

finally broke down and got a handicap sticker for my car about 4 years

ago, it still took me a whole year just to get used to the idea of

actually using it. Now I thank God I have it and I use it regularly. It

is very hard sometimes to adjust to all the changes we have to go

through. Everyone is different so the pace of these changed are different

for everyone too. Alot of different factors go into it.

I tried some of those cloth stretch braces for a while. You you can get

from Chiropractors offices and even over the counter at some drug stores.

Maybe even on-line now for all I know. They do help a little. At least

for doing housework, carrying groceries and such. A few years ago I even

went to a sports store (namely Models), with my husband and bought one of

those stretchy spandex type -lumbar wrap around belts. This type of belt

is really meant for weight lifting. That is why my husband was getting

one. When I saw it there it looked perfect for lumbar support so I

bought a " His and Hers " version of it. It is more figure conforming

than the slightly more cumbersome " white cloth back brace " . You can fit

it under your clothes easier without any bulge. I liked it because no

one could even tell that you are wearing it. It actually helped me for a

little while. Last year I finally threw in the towel and bought myself

what I consider to be a really cool walking cane. It is a metal " fold

up " cane from the local drug store. It is very helpful to me. It is no

bigger than a fold up umbrella. It snaps into place just that quickly

too. Amazing I thought. It folds up small enough to put in your purse.

You can pull it out when you really need it and put it away just as

easily so it is not cumbersome at all. I never thought I would eventually

need a cane. But here I am at that point. It really helps a lot. I even

use it when I walk my dog around the block. It is so convenient to be

able to fold it up again if you are at the movies or sporting event and

such. Good Luck with everything. Hope this helped a bit.

Carol

...........................................................

>Hello,

>I have just signed on to this group a few days ago. I

>need to know if what I am experiencing is typical or

>not? I am going to a Dr Cohen of s Hopkins

>Hospital of Baltimore land on Tuesday. Does

>anyone have any information on him? Does anyone have

>any information on any Baltimore/Washington doctors?

>I appreciate all the imput on what to ask & when. I

>may be looking throught the rose colored glasses, but

>I am hoping for a brace of some sort to help my back

>take the load when I am doing something that I KNOW

>will cause pain, spasms, etc. I have been involved in

>American Civil War re-enacting for about 14 years and

>have worn a corset a LOT. It was a challange to get a

>corset that fit me properly, but I found a seamstress

>that is excellent. With her expertice & my knowledge

>of my body we were able to come up with a corset that

>is not only comfortable to wear, but supports my back.

>I am more comfortable than most who wear a corset in

>the hobby. Sometimes I wonder if it isn't beacause I

>wore the Milwalkee brace for so many years. I am NO

>WAY jumping into surgery until I exhaust all other

>avenues. I also have another MAJOR hurdle, I am on

>prednisone for lupus, so I have osteoporosis. I broke

>the bone behind my baby toe the beginnign of April

>2005 & it has hardley healed at all. They actually

>want to start me in an daily injectable drug for

>osteoporosis. I am holding off on that too. I am

>rambling. What other options have been offered to

>help support the back to decrease the muscle strain?

>Has anyone been braced post harrington or in adult

>stage of life for any of there problems? If so, did

>this help. There is probably an archive on this, so I

>am off searching.

>Thanks,

>Lynne

[Guest guest]

Hi, Lynne -- I hope you can find the information that you need on bracing. And I hope that, as you are hoping, orthotics will be sufficient to keep you comfortable. Although I do not know anything about Dr. Cohen specifically, I tend to think anyone affiliated with s Hopkins and its spinal deformity correction group is likely to be pretty topnotch. As you probably know, Dr. Kostuik was their "grand old man of flatback syndrome revision" for many years after relocating from Canada to the US and Baltimore. I take it he is retired now, or should be retiring soon, and I would not necessarily recommend him at this stage of his career (but only on the basis of hearsay, I hasten to add). Any trainee or fellow of his would almost surely be an excellent choice for you, however. I can't tell from your post whether you have any symptoms of flatback or other post-scoliosis-surgery complications, or even

whether you have undergone any such surgery in the past or acqured that old bugaboo, the now-infamous Harrington rod. As you might assume, the Hopkins group is likely to be weighted a bit toward surgery. (In the case of iatrogenic flatback syndrome, their longtime specialty, there is essentially no other choice, at least when the flatback condition progresses, causing untenable deformity and disability.) The question seems to be WHY you need bracing, and whether this is the best long-term alternative for keeping you mobile and relatively pain free. I hope you can get a satisfactory answer from Dr. Cohen, and I trust that you will seek a second or third opinion regardless.. s Hopkins, incidentally, has also been at the forefront of research into the genetics of scoliosis. Now Medtronic (among other donors?) has funded some large-scale genetic research which will make use of the Mormon

archives in Salt Lake; but for years s Hopkins stood alone in this area. I can certainly empathize with your desire to avoid surgery. Sometimes it is really the only option that offers any hope, but you are wise not to leap into it or accept a surgical recommendation (should you get one) without seeking further opinions and alternatives. These fusions and revisions are MUCH easier than they used to be (when I had my first one in 1962!), but they are still a VERY big deal. I am so sorry to learn that you have lupus. I do not know if this means that your osteoporosis is more severe than it might otherwise be? Just anecdotally, many of us in groups like this one seem to have developed the condition -- and I don't mean early osteopenia, but full-blown osteoporosis -- relatively early in life. By the time I learned of my own osteoporosis in my early fifties, I had already lost significant bone mass. I

seem to be holding steady on the weekly oral 70-mg dose of Fosamax but am hoping to learn more about that new monthly drug. Daily injections sound kind of extreme, and I wonder why they would be recommended for you. No doubt the picture is very complex in your case. Just thinking about the autoimmune basis of systemic lupus, the immunosupppressive effects of prednisone . . . well, I trust you are in the hands of some very expert specialists you can trust. It's awesome that, with all these medical challenges, you remain active in Civil War re-enactments -- you definitely qualify for "Feisty" membership, possibly with a medal thrown in. Please, will you keep us posted on your research and your experiences at Hopkins? Thanks so much for writing.. Best, , Lynne Gaither <cordedpetticoats@...> wrote: Hello,I have just signed on to this group a few days ago. Ineed to knwo if what I am experiencing is typical ornot? I am going to a Dr Cohen of s HopkinsHospital of Baltimore land on Tuesday. Doesanyone have any information on him? Does anyone haveany information on any Baltimore/Washington doctors? I appreciate all the imput on what to ask & when. Imay be looking throught the rose colored glasses, butI am hoping for a brace of some sort to help my backtake the load when I am doing something that I KNOWwill cause pain, spasms, etc. I have been involved inAmerican Civil War re-enacting for about 14 years andhave worn a corset a LOT. It was a challange to get acorset that fit me properly, but I found a seamstressthat is excellent. With her expertice & my knowledgeof my body

we were able to come up with a corset thatis not only comfortable to wear, but supports my back.I am more comfortable than most who wear a corset inthe hobby. Sometimes I wonder if it isn't beacause Iwore the Milwalkee brace for so many years. I am NOWAY jumping into surgery until I exhaust all otheravenues. I also have another MAJOR hurdle, I am onprednisone for lupus, so I have osteoporosis. I brokethe bone behind my baby toe the beginnign of April2005 & it has hardley healed at all. They actuallywant to start me in an daily injectable drug forosteoporosis. I am holding off on that too. I amrambling. What other options have been offered tohelp support the back to decrease the muscle strain? Has anyone been braced post harrington or in adultstage of life for any of there problems? If so, didthis help. There is probably an archive on this, so Iam off searching.Thanks,Lynne

__________________________________________ DSL – Something to write home about. Just $16.99/mo. or less. dsl.

[Guest guest]

Hi ,

Yes, that heat was so bad that the bottled water we bought would be hot to the touch if you didn't drink it within 15 minutes or so. I swear that water could've come to a boil if we left it much longer. Yes, Gettysburg is a deeply moving place. I would like to even take one of those night "Ghost Walks" next time I go there. Yikes! : ) Anytime we head south for a vacation, my husband always says...can we go visit Gettysburg? He just loves it there. We even visited there before they blew up the Tower. My family got to go to the top of that observation tower. They said it was great. I had to stay behind to watch my dog, that we foolishly brought along with us on vacation. Next time we went...no dog, but they blew up the Tower, right while we were visiting. We were watching it on the hotel news station on TV and looking out our window -seeing it in person at the same time. It was an awesome site. I think they dynamited it. That made me sad though. The Gettysburg Tower was an icon there for such a long time. Very sad.

I am glad you are giving us some idea about revision surgery. It is comforting when you say how much better a job they are doing with it now, and the fact that getting through it and getting past the "dread" is the best part. It looks to me that even if there are more surgeries to "revise" the revision up the road for us then at least the hardest part will be over with. It is good to have a light at the end of the tunnel. This damn thing has consumed me for almost 6 years now. But I swore that I would have to go kicking and screaming before they get me on a gurney again after all the hell I went through 32 years ago. I had my Harrington Rod/fusion surgery done in the worst place possible. The Hospital for Joint disease in Harlem NYC. ( It was the first one, it's tore down now, thank God) The pain levels, the treatment of patients, the Hospital, the procedures, and even the area itself were horrendous. The trauma is still fresh in my mind. But from what I hear now, pain control and surgeries are so much better these days. I am holding on to that thought.! And I am looking forward to getting my 17 year old butt back when they carve me out a lordosis again. LOL

I will definitely let you know when I do this. I am still working on "getting my mind right" to undergo this rigorous surgery. Take care

Carol

............................................................

On Sat, 7 Jan 2006 12:15:55 -0800 (PST) Rasche <feistyfounder@...> writes:

Dear Carol,

Just a note to say that oh, yes, I know about that summer heat at Gettysburg! My brother is a huge Civil War buff, although not a reenactor. He goes back to Gettysburg again and again and stays for several days at a time. The year we took a family trip to Myrtle Beach, all of us in my brother's car, his only request was that we all spend half a day at Gettsburg en route. For him this was almost nothing, but I think I came close to some kind of heat prostration -- must have been 102 that day. I know this is a deeply moving site, and I get choked up just thinking about the battle and President Lincoln's address, but still, an endless walking tour of this and that milestone or stretch of grass was just a little much for me in that kind of weather!

Best,

-unsubscribe

[Guest guest]

I'd take the surgery just to have my 17 year old butt back! What factors determine if they will move forward with surgery? Do you have to be to the point your using a cane or handicap parking? I'm certainly not at that point. However, I'm at least 50% less active than I use to be. Today I've been cleaning my kitchen and have had to take a break every 1/2 hour or rest/elevate my foot on a chair to take off the pressure while I'm washing off dishes (from all the dust I'm accumulated). I thought I woke up with a 5 level pain today. . . however, after grocery shopping I was back to an 8 with intermittent pain in my buttock. I know now that I've stopped and sat down, when I get up again I'll be leaning over and have to lay down for the night. I hate that...Irish539@... wrote: Hi

, Yes, that heat was so bad that the bottled water we bought would be hot to the touch if you didn't drink it within 15 minutes or so. I swear that water could've come to a boil if we left it much longer. Yes, Gettysburg is a deeply moving place. I would like to even take one of those night "Ghost Walks" next time I go there. Yikes! : ) Anytime we head south for a vacation, my husband always says...can we go visit Gettysburg? He just loves it there. We even visited there before they blew up the Tower. My family got to go to the top of that observation tower. They said it was great. I had to stay behind to watch my dog, that we foolishly brought along with us on vacation. Next time we went...no dog, but they blew up the Tower, right while we were visiting. We were watching it on the hotel news station on TV and looking out our window -seeing it in person at the same time. It was an awesome site. I think they

dynamited it. That made me sad though. The Gettysburg Tower was an icon there for such a long time. Very sad. I am glad you are giving us some idea about revision surgery. It is comforting when you say how much better a job they are doing with it now, and the fact that getting through it and getting past the "dread" is the best part. It looks to me that even if there are more surgeries to "revise" the revision up the road for us then at least the hardest part will be over with. It is good to have a light at the end of the tunnel. This damn thing has consumed me for almost 6 years now. But I swore that I would have to go kicking and screaming before they get me on a gurney again after all the hell I went through 32 years ago. I had my Harrington Rod/fusion surgery done in the worst place possible. The Hospital for Joint disease in Harlem NYC. ( It was the first one, it's tore down now, thank God) The pain levels, the

treatment of patients, the Hospital, the procedures, and even the area itself were horrendous. The trauma is still fresh in my mind. But from what I hear now, pain control and surgeries are so much better these days. I am holding on to that thought.! And I am looking forward to getting my 17 year old butt back when they carve me out a lordosis again. LOL I will definitely let you know when I do this. I am still working on "getting my mind right" to undergo this rigorous surgery. Take care Carol ........................................................... On Sat, 7 Jan 2006 12:15:55 -0800 (PST) Rasche <feistyfounder@...> writes: Dear Carol, Just a note to say that oh, yes, I know about that summer heat at Gettysburg! My brother is a huge Civil War buff, although not a reenactor. He goes back to Gettysburg again and again and stays for several days at a time. The year we took a family trip to Myrtle Beach, all of us in my brother's car, his only request was that we all spend half a day at Gettsburg en route. For him this was almost nothing, but I think I came close to some kind of heat prostration -- must have been 102 that day. I know this is a deeply moving site, and I get choked up just thinking about the battle and President Lincoln's address, but still, an endless walking tour of this and that milestone or stretch of grass was just a little much for me in that kind of weather! Best, -unsubscribe

[Guest guest]

Hopkins usually have their interns come to GMC IN

Danville PA where I attend my appts. If you would like

call Doctor Parenti www.geisinger.org for more

information.

--- Lynne Gaither <cordedpetticoats@...> wrote:

> Hello,

> I have just signed on to this group a few days ago.

> I

> need to knwo if what I am experiencing is typical or

> not? I am going to a Dr Cohen of s

> Hopkins

> Hospital of Baltimore land on Tuesday. Does

> anyone have any information on him? Does anyone

> have

> any information on any Baltimore/Washington doctors?

>

> I appreciate all the imput on what to ask & when. I

> may be looking throught the rose colored glasses,

> but

> I am hoping for a brace of some sort to help my back

> take the load when I am doing something that I KNOW

> will cause pain, spasms, etc. I have been involved

> in

> American Civil War re-enacting for about 14 years

> and

> have worn a corset a LOT. It was a challange to get

> a

> corset that fit me properly, but I found a

> seamstress

> that is excellent. With her expertice & my knowledge

> of my body we were able to come up with a corset

> that

> is not only comfortable to wear, but supports my

> back.

> I am more comfortable than most who wear a corset

> in

> the hobby. Sometimes I wonder if it isn't beacause I

> wore the Milwalkee brace for so many years. I am NO

> WAY jumping into surgery until I exhaust all other

> avenues. I also have another MAJOR hurdle, I am on

> prednisone for lupus, so I have osteoporosis. I

> broke

> the bone behind my baby toe the beginnign of April

> 2005 & it has hardley healed at all. They actually

> want to start me in an daily injectable drug for

> osteoporosis. I am holding off on that too. I am

> rambling. What other options have been offered to

> help support the back to decrease the muscle strain?

>

> Has anyone been braced post harrington or in adult

> stage of life for any of there problems? If so, did

> this help. There is probably an archive on this, so

> I

> am off searching.

> Thanks,

> Lynne

>

>

>

> __________________________________________

> DSL ? Something to write home about.

> Just $16.99/mo. or less.

> dsl.

>

>

>

>

>

>