hello!

October 19, 2003

Hello Icarus, All your symptoms sound like Reactive Arthritis, we kinda

stopped calling it Rieters syndrome when it was found out Dr. Rieter was a

Nazi. There are many of us that have gone through what is happening to you. Get

the best Rhumey you can and demand to try the antibiotics regime first, it may

be to late for that treatment but that will be between you and your doc.

You may be one of lucky one's that will go into remission soon but you

need to start working with a rheumy and get a game plan going. ReA, Fibro

October 19, 2003

Icarus,

I agree with , your symptoms are very similar to what I and others

in this group have presented at one time or another. I have gone through the

stool thing myself, and I hope I never have to again. I was fortunate to get my

ReA diagnosis in 6 months time, I think the majority of us wait year(s) for

theirs. Be tough! Harv I'm 48/ ReA 24 years

October 20, 2003

Re: Hello!

Hi (Fishrchef),

Thanks for your response (and Hello to all the other members)

I'm seeing the doc' later today and I shall ask him for something like

anti-biotics or a Penicillin jab. (As you say, it could be too late, and I'm

sure that it probably is.)

It's reassuring that you people manage to keep going in spite of adversity

and even hold down jobs as well.

Of course I'm a little saddened that I've probably got 'this thing' in the

first place, and not the " Benign " Fybromyalgia that I was diagnosed with 3

years ago.

And that medical treatment and financial assistance have been non-existent

as a result.

I'm a bit miffed about this because I was treated like a malingerer by my

doctor and by a so called Arthritis 'Specialist' when I first approached

them about the pain.

And since we live in a small town in a rural area, there are few other

choices of doctors and medical assistance...........This is rural Wales, in

the UK..........And with the poor Health system that we have here and the

waiting lists.........Well, don't get sick!

Something I forgot to mention in my first e-mail was that I do not have the

ridged finger-nails or toe-nails that are mentioned in the websites.

The doc' also now thinks that I have ulceration in the bowel area and

perhaps the oesophagus, which doesn't appear to be clearing much. (Hence I

feel permanently unwell.)

I think that that was mistaken for Irritable Bowel Syndrome and no tests

were done.

More recently I was treated with Omeprazole for ulceration and it gave some

relief, but it causes diarrhoea and I was starting to suffer from the

effects of that too.

I wasn't aware that " Herr Reiter " was a Nazi, but (I thought that his forte

was the First World War.) I guess that I'll refer to it as RA from now on,

unless I have to refer to the specific condition of Reiter's.

Anyhow, I have a bad feeling about today but we'll see what the doc' says

later on today! (Monday)

Catch you all later!

Mal. (Icarus)

October 20, 2003

Hi Harv,

Thanks for your response.

Again it's reassuring to hear your comments and that you've had the 'bug'

for 24 years, although I feel sorry for the suffering you've obviously gone

through.

I think that my chief concerns, at the moment are the enteric ulceration and

the myocarditis that my doctor seems to think that I have.

And, I feel that I've just been patiently " sitting on my backside " for 2 or

3 years, waiting for these people to " pull their fingers out " ..........Just

because they didn't believe that anything was wrong with me.

Even so, since my latest attacks started (August 7th), I've already waited

more than 9 weeks to see the original Specialist that diagnosed me with

Fybromyalgia. (I was just " dumped " when they diagnosed it as Fybromyalgia.)

(You will appreciate that I feel quite bitter and angry about that and I'm

aware that 'feeling angry' is counterproductive in itself.)

Anyway, I'm hoping for some better news this afternoon when I see my doc',

although I'm not really expecting anything new.

I shall be in touch later today. (Monday.)

Best regards to all!

Mal.

October 21, 2003

In a message dated 10/19/2003 8:17:40 AM Pacific Standard Time,

malsam.skysurfer@... writes:

I have bouts of tiredness and shortness of breath and sinus inflamation or

flu-like symptoms and these appear to come and go at random. I also get joint

aches, muscle aches and spondylitis aches, sometimes with pains in the lower

lumbar region

This sounds very similar to what Adrienne deals with, minus the shortness of

breath. She does suffer from flu like symptoms, mild feverishness...but

usually when temp is taken, she is sub normal. The various aches and pains you

are

describing.

She hasn't had much of the stomach/intestinal problems for a couple years,

since going on Celebrex. But prior to that... oh my. And while I say she

hasn't had much... she still does have bouts of 'worshiping the throne' from

time

to time.

Since your doctor is so unfamilure with the possible diagnosis of Reactive

Arthritis... is it possible to seek another opinion? Can you be seen by a

rheumatologist? Preferably one that has at least heard of reactive arthritis...

From some of the notes I sometimes wonder... if some of the doctors have not

even heard of it.

Anyway... I would encourage you to get another opinion.

Getting a diagnosis can take years. The fortunate get it sooner.

I was pleased to read that you had been seen by an opthamologist. I would

hope, if you had arthritis in your eyes, that would have shown. I know it did

for Adrienne. She was seen during a flare up with her eye. (the advantage of

having the MD live next door) and then seen at his office AFTER things had

calmed down. But he was able to diagnose the arthritis being present in her eyes

immedately.

I hope you can get answers and then get treatment. Adrienne is living a

wonderful, if sometimes painful life. But because of diagnosis and

treatment...she

is doing very well. I wish the same for you!

K

Adrienne's Mom

Adrienne age 19, University student, 1 credit short of being a

junior...But... now she is carrying 18 credits, Chemistry, Biology, nutrition

jazz dance,

class voice lessons, private voice lessons and concert band, And... currently

playing Chava (3rd daughter) in Fiddler on the Roof at a musical theater nearly

an hour from campus. Oh and she has Undiff Spondy, Hypo Thyroid,

Fibromyalgia, Chronic Fatigue and currently wearing a boot (walking cast) for

inflamed

tendons in her calf/ankle.

October 21, 2003

Hello 'K',

Thanks for your e-mail,

Your daughter Adrienne and I seem to have a few things in common, except for

age.

At time of writing I don't have half of the symptoms that the websites show,

although I can admit to many things that people in this group have

mentioned; as well as some symptoms in common with my friend's wife, who has

Palindromic Arthritis.

At this moment in time my chest feels heavy and tight, and is therefore a

little restrictive of breathing.

And it's hard for me to know whether this is heart related or otherwise,

since few checks have been made in that quarter. (Except for an E.C.G. about

a fortnight ago, which the doc' claimed " was better than he

expected " .........A bit non-commital, I think.)

At yesterday's appointment my doctor didn't seemed concerned and maybe he

had good reason for that; but I have to wonder whether that's just ignorance

or extraordinary knowledge. (Which he isn't sharing.)

You mentioned changing my doctor and I have to tell you that I did change my

doctor, after an apathetic response from my first G.P.

At that time he had told me that he could find nothing wrong with me and

that therefore there was nothing!

(Doctors with that attitude should carry a health warning, as they can be

dangerous!)

After a few visits to him, complaining of the same symptoms he actually told

me that, " there were sick people out there and that I should stop wasting

his time! "

On that note I changed my G.P. (to his partner) and he made arrangements for

me to see a Consultant Rheumatologist. (The 'big-cheese' at the local

hospital.)

It took months to get an appointment and when I did I was sidelined to see

his assistant.

She bent me and twisted me into most of the popular positions that Human

beings can get into (along with a few others that I hadn't heard of), and

she even seemed annoyed to be there at all.

She muttered something about M.E. and was generally quite impolite.

(It took me 5 co-proxomol to get down off the ceiling after

she'd done all of this.)

So, I went back to my G.P. the next day and told him about it; and he

immediately made a request for another appointment to see the

( " big-cheese " ) Consultant Rheumatologist...................Several months

passed.

Finally I received an appointment and turned up, to find the " Big Man "

himself and his " growling lady assistant " with him.

After a fairly lengthy examination and many questions he diagnosed me with

Fybromyalgia and told me that it would go away with some exercise; and that

it was not under his juristiction.

I was none the wiser and thanked him, as I got dressed and limped away with

my new found condition.

That was more than two years ago and other symptoms have reared their heads

since then.

My own G.P. wasn't impressed with the diagnosis, but was 'outranked' so the

condition was treated with gentle exercise, some prednisilone and some

eyedrops for my dry eyes.

After a while the prednisilone was stopped as were the eye-drops.

(*Although some of the dry-eye symptoms remained I put up with them..)

The exercise did some good, although it also caused quite a lot of pain

afterwards and co-proxomol became my 'partner'.

I was living with it and hoping to get into a job where I wouldn't have to

climb under Airport Equipment and handle spanners in cold weather, as I had

been trained to do.

So in the meantime I trained a bit on Computers, Accountancy and Management,

in the hope of getting something in a local office.

I was actually due to start at University about a month ago but this latest

flare-up of what my doc' then thought was full-blown Reiter's Syndrome put

paid to that for this year.

My doc' advised me against it, because of the stress involved and the

auto-immune factors!

And, he still doesn't really know what's wrong with me but I feel that my

condition is slowly worsening, without any real guidance or treatment.

There are few other options for doctors in this area (because of full

surgeries) and they all lead down the same road to the same Rheumatologist a

t Bangor Hospital.

(Since the other major hospitals in our area are at St. Asaph, Aberystwyth

and Wrexham.)

If I went private I could probably go and see this very same Rheumatologist,

quite quickly; and that also bugs me a bit!

On the subject of stomach and intestinal problems, I've only been treated

with the usual anti-ulcer drugs like Omeprazole and these haven't been fully

successful. (I had to stop them about 2 weeks back because they cause

diarrhoea.)

I've never heard of Celebrex, so I'll ask my G.P. when I next see him. (I

assume that Adrienne has the enteric version of Reactive Arthritis and that

this is the marketing name?)

From time to time I feel nausea but I seldom 'worship the throne'.

(I rarely vomit.)

I just feel as though I have a tightness in my throat and 'lump' in my lower

oesophagus with the nausea and sometimes a squeezing and choking feeling at

the 'top end'.

Large or spicy meals have brought discomfort and a hot, feverish feeling.

(So I don't do them anymore.)

In the lower regions (bowel area) I experience a lot of discomfort with

cramps and spasms and I feel particularly unwell when the bowel is either

very full or very empty. (Sorry to be graphic but....I try not to let the

" stuff " down there get too wet or too dry.)

Enough about me.....I am sorry to hear about your problems and your

daughter's problems in this way........Somehow it doesn't seem fair for a 19

year old to have this kind of illness. (It's not fair for anyone really.)

She's certainly very brave doing all of the stuff that you mentioned and I

take my hat off to her.

I certainly never envisaged anything like this when I was 19 and was

probably at greater risk then, than at any other time in my life.

However, I'm still having trouble coming to terms with it all even now, at

my age.

Anyhow, thanks very much for your kind words and reassurance.

This e-mail seems a bit one-sided as I haven't very much knowledge or

experience of this thing to be able to help you 'guys'.

I just hope that they'll make some major breathrough towards a cure or even

a better medication or understanding of what's happening to us

all..........Soon!

And, with a bit of luck my Rheumatologist will get a cancellation sometime

soon and I'll get my invitation to his party.

Thanks again K.

Best regards to all!

Mal.

(Icarus.....The guy who flew too close to the Sun and melted his

wings.....Ha! Ha!.....'Looks as though I've certainly done that!)

October 21, 2003

In a message dated 10/21/2003 8:34:51 PM Pacific Standard Time,

malsam.skysurfer@... writes:

Celebrex,

Do ask about it. It works for some and not for others. For Adrienne, it

works. Celebrex is in my opinion, kind of an expensive ibprophine that is much

more effective and safer on the stomach... at least so far.

It helps with the inflamation. I am sure, with the cost of Celebrex, that

they have a fantastic web site online.

Wow, after reading your note... Wow!

I and many others on this list can relate to the doctors who more or less...

sometimes directly tell the patients that they MUST be imagining all this...

it couldn't Possibly be happening!

Adrienne encountered that...when I was taking her in repeatedly for 'sick

headaches' she was having on a daily basis... The Physicians Assistant who

believed he was next to G-d... very arrogant man... took me aside one day and

told

me... " you are paying too much attention to your daughter, she cannot possibly

be having this many complaints. She must be overly sensitive and you need to

not pay so much mind to it. "

Can we say Furious? Oh I was upset. I Knew she was not making this up. We

Never saw him again! I made sure of that. We also left that entire 'non

health' plan and went to see real doctors.

I agree with you... some should wear a warning sign! Love your humor!!!

Thank you for your letter. This group is about sharing. And.. right now, it

is our turn to try to help help you with suggestions and support and

friendship. We were all 'new' here once.

About Adrienne being 19... in all honesty, I am SO thankful this was

diagnosed when she was 15 and we have had the years to work with it and get

answers

and help and medications that work. This way... she is on our health plan, it

is ok if she needs to go to bed for a week or a month. We can be her safety

net right now.

I figured out how I can continue to have her on my insurance policy until she

is 23...(I will be going to work for the school distrist in another year or

two) and then a cobra policy after that. So... hopefully... all will work

well for her and her future.

Some days I ache for her. But she is so positive...she says... in some ways

this illness has been the best thing. It showed her who her true friends

were. She found many people she thought her friends, were not really and then

others... she found are. She has a Most awesome group of friends!

I will be thinking of you and hoping you can get a diagnosis and some

treatment that helps you feel better and resume activities you enjoy.

K

October 22, 2003

Hi again ,

Thanks for your last e-mail............I've just noticed that you have ReA,

Fibro added to the end of that last mail.

I'm guessing that that means that you have been properly diagnosed (for sometime

now) with Fibromyalgia as well as whatever else you may have?

If that's so, could you tell me whether your Fibromyalgia was/is confined to the

upper body, or does it also affect the lower half, below the waist?

When I was diagnosed with Fibromyalgia, they told me that I couldn't have

Reiter's because the symptoms I had only affected me above the waist.

(I had told the Chief Rheumatologist about some aches in my knees, but I

couldn't be sure whether it was down to earlier injury, or riding motor cycles

for long distances in cold weather, during my younger days.)

Of course quite a few other aches and pains have accumulated since

that diagnosis, 2 to 3 years ago and some of these may also have some

connections with earlier injuries.......So it becomes difficult to be certain

whether all of my aches and pains are ReA or whether they were there all the

time.

(Sometimes I even wonder how much of my problem can be attributed to Repetitive

Strain Injury and an unsatisfactory posture when using the computer?)

Living in a hot, dry climate took a lot of the ache out of these old injuries

but when I returned to the UK (even on holiday), I started to feel my age again.

(Towards the end of my time in the Middle East I sometimes felt that the heat

was starting to get to me at work, but good air conditioning in my appartment

helped me to get good undisturbed sleep at night.

Since then, my tolerance for heat and for living in a hot climate seems to have

been eroded since I returned home, 4 years ago.)

Anyhow , this was just something that I've been wondering about for

sometime now, so I'd be interested to hear your views.

'Hope this e-mail finds you well and pain-free!

Best regards!

Mal (Icarus.)

October 22, 2003

Hi K,

Thanks for that information......I'd never heard of Celebrex, but Ibu profen

is fairly well known so I'll look around for that brand of the drug.

All in all I feel that my (often intermittent) symptoms are probably a lot

less than many in this group experience on a daily basis; and I've certainly

been spared the heel problems and a number of other symptoms so

far..........So, I feel quite lucky.

As I mentioned in an earlier e-mail to the group, my mother has full-blown

Osteo-arthritis and has had it for about 20 years now.

And, I sometimes think that her medical cabinet holds as many pills as some

pharmacies.

Her feet are now quite 'gnarled' as a result of the distortion and resemble

animal's claws; with one almost like a club foot and yet she walks around

the place. (I often wonder how she manages and her life is a constant string

of pain, even with all the pain killers she has.)

I know that her condition is very different in a number of ways, but the

erosion of the joints is common to both of our illnesses.

She claims to notice quite a difference with her diet, and that anything

acidic causes more inflamation and more joint pain.

So, I'm wondering if this may also accelerate inflamation and possibly more

joint erosion in people with ReA?

When I think logically about what acids do to calcium, I start to wonder if

less-acidic diets will help to cut down the joint erosion.

And, that perhaps drinking a mild alkaline like skimmed milk, may even help

to slow down the damage caused and provide a less-friendly environment for

any bacteria to breed in.

(And perhaps providing a little more calcium for the body to work with?)

Could this idea help somebody a little (or even a lot) against joint pain?

I fancy that drinking a large cup or two of luke warm (pre-boiled) water

from the kettle every day helps my digestion and may even help to flush out

and dilute some of the acid in my system. (Again with joints in mind.)

It doesn't taste that good but I think that on certain occasions, it has

given me some relief.......And my mother agrees with this.

I'm sure that having the insurance policy helps a lot and I wish that I had

one.

(I have wondered if I should try to take out a health policy and whether it

would be made void by the fact that I already know that I have some sort of

illness?)

Some years ago, and before I knew anything was wrong, I took out a life

insurance policy, with a short-term health plan attached to it, but I was

forced to cancel it when I became unemployed, because 1) I could no longer

afford it and 2) Because our Unemployment Benefits Agency told me that I'd

have to cancel it and live on the repayment before they'd give me any

benefits.

In retrospect I think I was probably too honest and that perhaps I shouldn't

have told them about it.

But then I couldn't afford to keep the policy running and my ReA condition

hadn't even been thought of at that time.

Even though I now think that some odd symptoms were starting to appear at

that time.

(At that time I classed myself as Unemployed and searching for a new

challenge rather than sick.)

Anyway, enough about me. (I sometimes talk too much.)

I'm certainly very sorry that any of us have this 'damned' thing and I

really hope that somebody will be able to make a medical breakthrough and

cure the suffering, if not the source and cause, sometime soon!

And, I hope that you 'guys' will have a less painful time of it in the

future.

Best regards and take care!

Mal.

October 22, 2003

In a message dated 10/22/2003 9:53:44 PM Pacific Standard Time,

malsam.skysurfer@... writes:

claims to notice quite a difference with her diet

There are several on this list that have had good experiences with diet

changes. Not that it is by any means a cure all, but... it can help.

When Adrienne is in a flare, she first eliminates any wheat from her diet.

Next is 'night shade family' plants... tomatoes, potatoes, and more. She goes

to eating mostly fish and a nearly vegitarian type diet.

There are some books that help with diet and arthritis... hopefully someone

will share some titles they have found helpful.

As for Celebrex, it is similar in some ways, but I am by no means an expert.

I would suggest you talk to either your doctor or a pharmisist and get some

more information.

I am just curious, what country are you in?

K

Adrienne's Mom

October 23, 2003

Hi again K,

I'm actually in the UK so some pharmaceutical marketing names could be

different......But now I know that it's a kind of Ibuprofen, I'll know what kind

of stuff to ask for.

You mentioned " nightshade " plants like Tomatoes and Potatoes.

I have also been warned off eating these things, in any sort of quantity.

Potatoes contain starch and Tomatoes are quite acidic and I'm told can cause

Irritable Bowel Syndrome because of their make up, when eaten in quantity by

people with sensitive digestive systems.

I was also told that the Tomato family is quite a big one too and there are

other vegetable family members that aren't altogether obvious as being a

problem.

(Lactose in dairy products can also cause problems to IBS sufferers.)

One Enterologist Specialist told me (7 years ago) this after I'd had an

endoscopy; and he'd found 4 duodenal ulcers in various stages of inflammation

and healing.)

You mentioned Wheat products with Adrienne and I assume that she has been tested

for Coelic Disease as well?

(Seliac.....The disease caused by of intolerence of Gluten products.)

I'm certainly not wishing Seliac disease on anyone, but you can actually get

hold of Gluten-free bread to try and perhaps this would help her to eat more

normally when the flare-ups happen.

(Or hopefully even eradicate some of her symptoms altogether, if that's a major

part of her discomfort.)

Well, if you'll pardon the pun, " it may be food for thought! "

Anyhow, I don't know if any of this will be of use to you, but I hope that it

may help to alleviate a little of somebody's suffering, if they're unaware of

these things.

'Hoping that your heel pain goes away really soon!

Best regards!

Mal.

October 23, 2003

Here we are talking again, Mom. I see that your daughter and I have some

other things in common with our disease process. I became a vegetarian last

year, about 13 months ago. I can eat small amounts of fish and wild game,

but that's about it. Any thing else makes me sick. It makes me so sick now

that I wonder how I ever made it when I ate all of that stuff.

I am not on a crusade to convert others to my way of eating or anything, I'm

just throwing it out to the group as a sort of reinforcement for anyone who

is thinking of trying it. I had it in the back of my mind for years before I

got with it. Then, I did it cause it was easy--a restaurant in town made a

veggie dish full of antioxidants. Since I moved to MI for health reasons, I

decided it was time to go all out, now or never, on the diet improvements

and trials. The positve result was immediate for me--I didn't even have to

avoid meat wondering if it was deprivation for nothing. Since years ago I

tried a solid protein diet as recommended by a professor in England for AS,

I had tried exactly the opposite and gotten some results. It was a bit weird

that the seemingly exact opposite-from all protein to all veggie( I did eat

dairy and eggs at the start--there's just something about an egg that agrees

with me) might work, but it did.

I guess some of us will try anything to get past this disease process trying

to rule our lives. Wouldn't it be nice to have it fade into the background

for a while, at least now and then?

/MI

October 28, 2003

Hiya, Malcolm!

I was just reading what has happened to your mother and am asking myself if

she might have been 'diagnosed' as I was. Before my AS diagnosis, I was

diagnosed with all sorts of other rheumatoid diseases and conditions as well

as tendonitis, bursitis, and other things involving various joints. Taken

altogether, it's probably all AS, but no one did the leg work medically till

I referred myself to a rheumatologist. I made the appointment for sleep

medication and ended up having a major back 'owie' before I reached the

appointment. It was great timing, if there is such in pain situations as she

saw the agony on my face and got very busy with testing--something the

orthopedic doc had failed to do for many years. I also had had a situation

after a bout of pneumonia which I wonder now if it wasn't reactive

arthritis, since my knees were swollen and red, in addition to the pain.

Since I had been going to an interneist and an orthodoc, they weren't

sharing information and didn't have an opportunity to make a connection

between the two situations. I don't know if they'd have had the knowledge if

they had the information.

So maybe your Mom's closet of pills is somewhat related to her lack of a

diagnosis.

Hope you're well today.

, AS, FMS, and others depending on which doc we're talking to

October 29, 2003

,

I had a similar situation of decades of treatments by orthopedists with no

proper testing, diagnosis or treatment, until I saw a rheumatologist, and to

boot a very good rheumatologist. I think part of it is that rheumatologists

are internists as well (they become internists then become rheumatologists).

My rheumatologist is also a Professor of Internal Medicine. I think it's

that whole body, systemic training as opposed to the mechanical focus of

orthopedists that makes all the difference in our disease. Our disease

looks mechanical, but it isn't, it's immune system. I personally won't go

to orthopedists anymore. They wasted my time for too many years and I have

no respect for them. Just being completely honest.

God Bless,

Janet in SF

ReA since 1973; diagnosed 1997; HLA-B27+

October 29, 2003

Hi, Mark, and welcome to the group.

I like your straight-forward, analytical approach to your case. You seem to

have a positive approach, and that's bound to be helpful. For me it's extremely

difficult not to turn into a scared little girl when doctors start poking around

at my back. (I don't remember a time when I wasn't a scoliosis patient, as the

curvature was diagnosed at birth.)

You're right, the question pretty much boils down to " have surgery or not " , as

well as " If I need it, do I get it now or later? " Do we wait for better

techniques, or try to head off extensive joint damage?

It's also nice to " hear " more male voices here; keeps us from turning into a

complete " hen party " . ;^)

Best of luck in figuring out what to do.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

Hello!

Hi everyone. My name is Mark and I'm grateful you are here!

Hx: Posterior spinal fusion with placement of Harrington rod for

scoliosis in 1981 from T4-L3 at University of Missouri-Columbia -

Gaines, MD.

Current provider: Lawrence G. Lenke, MD- Wash U./-Jewish -

St. Louis, MO

Physical Examination- " flattened lumbar lordosis "

Review of X-Rays/CT scan- " Pseudarthrosis at L2-3, flattened disks

from L3 to the sacrum/probable DDD at L3-4 and possibly 4-5 and 5-1

as well, superior laminar hook at L3 partially dislodged from the

rod, sagittal balance is 2cm in front of sacrum because of a lack of

lumbar lordosis "

Tx Plan- extention of instrumentation and fusion down into lower

lumbar spine, osteotomies to realign spine fusion in kyphosis due to

Harrington rod.

My experience with Dr. Lenke has been mixed. I heard good things

from a patient while in his waiting room. We all kinda formed a

support group right there. I didn't realize I should have packed a

lunch and perhaps supper for that matter. This patient who had good

things to say about the outcome of her surgery walked to use the

restroom and I noticed her spine had curves that made her look like

she had never had surgery. She reported having a second surgery

including cages (which I had never heard of).

My initial impression was that Lenke's bedside manners were something

to be improved upon. From reading the posts, perhaps this is

something he picked up from Bidwell. LOL. On the other hand, it may

have been from my presentation of self. At the time, my short-term

disability with my employer ended, my position had been replaced, my

employer stated they were going to discontinue my health benefits,

and Lenke was saying that he would not fill out any paperwork re: my

application for long-term disability benefits via my employer.

My current situation is that I'm still waiting approval for LTD, have

a Social Security case pending(received initial denial and am waiting

to go to hearing- Missouri is a pilot state that does not require a

second denial prior to going to hearing upon appeal), sold the car to

pay rent, blah, blah, blah, poor pitiful me.

I did get a copy of my medical records and Lenke thoughtfully

stated " He will have to work out his disability issues. He is in a

tough situation and certainly with his current alignment and

predicament he will be unable to hold gainful employment, I believe.

He will probably have to be seen to get some sort of disability

rating along the way as well. We do not provide that service here. "

Based on the waiting room experience, I realize the man just doesn't

have time to concern himself with those issues. He wants to do

follow up and was given a copy of a letter from my employer re: their

termination of my health benefits on 8/31/03.

I found this site yesterday and I'm hooked.

I found messages re: Artificial Disk Clinical Trials. Dr. F.

Gornet is on the panel and is in the St. Louis area so I quickly

fired off a letter requesting an " informational interview " . For

years, I have dreamed of the field evolving to this technology and I

feel I need to check it out. I'm extremely skeptical toward

experimental surgery not yet approved by the FDA. However, I'm also

familiar enough with research methodology to know that each and every

one of us has been experimented on in the past and will continue to

be experimented upon. That's how the field evolves. Every doctor is

encouraged to contribute to his field's knowledge base via research.

I've currently agreed to participate in a 5-yr study with Lenke.

He's making his contribution. I'll see what Gornet has to say and

keep you all informed. To his benefit, he Hopkins trained.

However, not many of these surgeries have been performed and there is

value to waiting to have surgery. It's the dilemma we all seem to

face...To have surgery, or not to have surgery, that is the question.

And if so, what kind, by whom, and an entire list of questions you

have generously provided for me to bring into the interview. I still

have hope that I will see the day when fusion reversals can be

performed by using artificial disks. In the meantime, if I can forgo

having additional vertibrae fused (I don't have many left to work

with), then I certainly have to give the artificial disk option the

consideration it deserves.

Best wishes,

Mark , LCSW

St. , MO

October 29, 2003

Sharon, I am so glad that you are alert to new members whether I am " around " or

not. You and some other members have been very much on the ball, as well as

gracious and thoughtful about welcoming people to the group. Many thanks!

That said: Mark, I want to join Sharon (albeit belatedly) in welcoming you to

the group. Also, I appreciate your detailed and frank comments on some of your

experiences.

Given that you are an LCSW, I expect you do not need any advice on dealing with

bureaucracies such as SSA, although you are clearly not immune to the

frustrations and hassles that seem to make things difficult for so many

applicants. (Incidentally, I know at least one other social worker in this group

who has had to go on disability. As you probably know, " flatbackers " represent a

real cross-section of professions and trades. There are many people at this

group who can empathize with the financial setbacks and hardships you have had

to face.)

I was glad to learn about the pilot program for expediting disability appeals

in your state. On the other hand, I was sorry to learn that an MD can

specialize in the treatment of complex -- and, all too often, totally

disabling -- orthopedic deformities, yet refuse to have anything to do with a

claim for SSDI! This is one important category of information about a specific

physician and his practice which should prove valuable and helpful to people at

a group like this one -- so thanks again for your candor.

Best,