Re: Appt. with Rheum.

[Guest guest]

Dear - I had so many wrong diagnosis from so called experts. You are in terrible pain and your rationality goes out the window. Your quality of life is effected. If your RA factor is positive and your sed rate is above normal then you have RA. Its only takes a simple blood test. I am going to send you an article about RA and nodules. I am on my 23rd RD. Yes you heard me correctly. I even had one RD give up on me saying there way nothing else he could do 1 year into my Diagnosis. Get a 3rd and a 4th and a 5th opinion. Your diagnosis is confirmed regardless of your current medical diagnosis. You have been on RA meds all along. Get ALL your records. Call the Drs offices of your past RD's and request them. Once collected, take them to a lawyer who specializes in Disability cases. Someone should be able to read your old RD's notes. You have to sue for your benefits but they count the time since your first actual diagnosis so the process can be much quicker since you have had this for several years. This is why I constantly tell people while you can work and your disease is under control, get long term disability. Its worth its weight in gold when you have a waiting period. The medications you have been on have failed obviously so push for another biologic. There is rituxan if a TNF blocking agent wont work. I have been on Remicade since 2000 with great results. In the meantime, since you have in such intense pain let me suggest something that might help. I was off Remicade due to an abscess for 6 months. I was on and off anti-biotic for it and only after being off it for a week my RA returned overnight. I have to say that the Anti-biotic therapy worked well for me. I was taking augmentin 875mg twice a day. I also can advocate for Colloidal Silver. I would get the strongest solution of 250ppm or higher which they use in hospitals. Your body thinks YOU are the infection so using anti biotic therapy does make sense. I have a very aggressive form of the disease so when I go from no visible swollen joints to severe swelling and pain everywhere in just a few days, I know the nightmare you are in. Pain does things to your mind. Get to another RD to get validation and a new biologic. If there is anything I can do on this end, please let me know. You are in my thoughts and prayers. Deborah

On Wed, May 28, 2008 at 10:46 PM, <catdelouise@...> wrote:

Please see below for background:

So, my Rheum. says he does not think all of the pain in my hands is RA, it is tendonitis, as

the nodules are around my tendons and not my joints. The disturbing things are I don't do

anything repetitive to have tendonitis and I am in a great deal of pain. My rheum. did not

seem to think this is a big deal.

I was so frustrated I yelled, " This is not a big deal? Today I took 30 mg. of Opana and one

Perc (325/10) (and it's only 10:30) and I am still in pain! I can't take care of my child, I

cannot dress or diaper my child! I cannot work! I am exhausted! "

So, now he wants me to see a hand specialist and get the nodules biopsied, which sounds

really scary but at this point I would cut one of my hands off if I could get the proper

treatment so I could get on with my life! He also ordered all new BW for everything under

the sun.

I have no choice but to apply for SSDI. I cannot work and I don't know when I will be able

to. I am just in too much pain and too exhausted and undependable. But of course, that

takes forever, and now that this Rheum. thinks I don't have RA, I am going to have a hard

time without a diagnosis, I would think. My original RA diagnois dates back to 2003 but

that Rheum. has died and no one can supposedly read his notes, and this Rheum. has not

seen me when I had very clear RA symptoms!

Sigh. I have a 3rd opinion set for July 3rd but will go ahead with the biopsy which sounds

logical.

Your thoughts and opinions, please?

Thanks so much,

>

> Hi All,

>

> I just had MRIs done of the right and left hand and I could really use your help in

> translating:

>

> Left Hand:

>

> " ....However, at the level of the fourth metacarpal head in the anterior soft tissues

anterior

> to the flexor tendon, there 7 mm nodule within the subcutaneous fat which is

> hypointense on Tq, hyperintense on T2...this abuts the flexor tendon.

>

> ...There is some enhancement of the soft tissues of the distal aspect of the thumb and

> fifth digit more so than the other fingers and I am not certain whether this is real or

> artifactual. There is an additional enhancing nodule approx. 6 mm in size on the volar

> surface of the hand at the level of the fifth metacarpal head, within the subcutaneous

fat. "

>

> Right Hand:

>

> " ...At the distal hypothenar eminence anteriorly, within the subcutaneous tissue, there is

> increased T2 and STIR signal present in an amorphous, ill defined region which

measures

> approximately 2 cm transverslely X 3 mm deep...Similarly, at the distal left fifth digit, at

> the site of a vitamin E marker, there is an area of increased T2 signal seen within the

soft

> tissue surrounding the bone...Findings are nonspecific and could certainly be due to

areas

> of focal soft tissue inflammation or infection. Correlation with clinical symptoms is

> suggested as well as physical exam. A low-grade vascular malformation can appear

> similar. These do not appear to be related to the joint space. Histologic evaluation may

> ultimately be warranted. "

>

> Google is not helping me, I need a layman's interpretation. Please help me if you can!

>

> Thank you,

>

>

>

[Guest guest]

The quote below is from http://en.wikipedia.org/wiki/Rheumatoid_arthritis

“The

American College of Rheumatology

has defined (1987)

the following criteria for the classification of rheumatoid arthritis:[9]

Morning stiffness of >1 hour most

mornings for at least 6 weeks.

Arthritis and soft-tissue swelling of

>3 of 14 joints/joint groups, present for at least 6 weeks

Arthritis of hand joints, present for at

least 6 weeks

Symmetric arthritis, present for at least

6 weeks

Subcutaneous nodules in specific places

Rheumatoid factor at a level above the 95th

percentile

Radiological changes suggestive of joint

erosion

“At

least four criteria have to be met for classification as RA.”

Sometimes RA is hard to diagnose and there

are many things that can be confused with RA so it is important to see a

well-qualified, board-certified rheumatologist.

If you are not satisfied with your

diagnosis and/or treatment, please get a second opinion (or third, fourth,

etc.) From my experience and what I have read an RA nodule can originate

in the joint, travel down the tendon sheath, and show up at some distance from

the joint. I think they come from the joint, but do not necessarily

appear right at the joint. Perhaps you can call the office about your

July 3 appointment to see if they have a cancellation so you can get in

earlier. It sounds to me like you are not getting effective treatment for

your problems and maybe your current doctor is not that well qualified.

Other than pain medication I don’t

know what you are taking or have tried for RA. Often patients that might

have RA or a related disease are given Prednisone because that is a strong

anti-inflammatory that usually gives prompt relief from symptoms if a person

has inflammation. If symptoms are not eased then the doctor must look

more carefully at other possible diagnoses. Relief of symptoms does not

confirm RA but it is consistent with RA or many other inflammatory

diseases. In addition to Prednisone most doctors start on some DMARD

(Disease-Modifying Anti-Rheumatic Drug) at the same time because if RA is not

treated early and aggressively it usually leads to permanent joint

damage. DMARDs are intended to slow or stop this joint damage.

Methotrexate is probably the most common DMARD because a lot is known about it,

it is used at higher concentrations as a chemotherapy drug, and it is

relatively inexpensive compared to many other RA treatments. I didn’t

read all of the Wikipedia article I cited but it probably has a lot of

information about medications for RA. I hope you get effective treatment

for whatever it is that you have. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of

Sent: Wednesday, May 28, 2008 6:47

PM

Rheumatoid Arthritis

Subject:

Appt. with Rheum.

Please see below for background:

So, my Rheum. says he does not think all of the pain in my hands is RA, it is

tendonitis, as

the nodules are around my tendons and not my joints. The disturbing things are

I don't do

anything repetitive to have tendonitis and I am in a great deal of pain. My

rheum. did not

seem to think this is a big deal.

I was so frustrated I yelled, " This is not a big deal? Today I took 30 mg.

of Opana and one

Perc (325/10) (and it's only 10:30) and I am still in pain! I can't take care

of my child, I

cannot dress or diaper my child! I cannot work! I am exhausted! "

So, now he wants me to see a hand specialist and get the nodules biopsied,

which sounds

really scary but at this point I would cut one of my hands off if I could get the

proper

treatment so I could get on with my life! He also ordered all new BW for

everything under

the sun.

I have no choice but to apply for SSDI. I cannot work and I don't know when I

will be able

to. I am just in too much pain and too exhausted and undependable. But of

course, that

takes forever, and now that this Rheum. thinks I don't have RA, I am going to

have a hard

time without a diagnosis, I would think. My original RA diagnois dates back to

2003 but

that Rheum. has died and no one can supposedly read his notes, and this Rheum.

has not

seen me when I had very clear RA symptoms!

Sigh. I have a 3rd opinion set for July 3rd but will go ahead with the biopsy

which sounds

logical.

Your thoughts and opinions, please?

Thanks so much,

>

> Hi All,

>

> I just had MRIs done of the right and left hand and I could really use

your help in

> translating:

>

> Left Hand:

>

> " ....However, at the level of the fourth metacarpal head in the

anterior soft tissues

anterior

> to the flexor tendon, there 7 mm nodule within the subcutaneous fat which

is

> hypointense on Tq, hyperintense on T2...this abuts the flexor tendon.

>

> ...There is some enhancement of the soft tissues of the distal aspect of

the thumb and

> fifth digit more so than the other fingers and I am not certain whether

this is real or

> artifactual. There is an additional enhancing nodule approx. 6 mm in size

on the volar

> surface of the hand at the level of the fifth metacarpal head, within the

subcutaneous

fat. "

>

> Right Hand:

>

> " ...At the distal hypothenar eminence anteriorly, within the

subcutaneous tissue, there is

> increased T2 and STIR signal present in an amorphous, ill defined region

which

measures

> approximately 2 cm transverslely X 3 mm deep...Similarly, at the distal

left fifth digit, at

> the site of a vitamin E marker, there is an area of increased T2 signal

seen within the

soft

> tissue surrounding the bone...Findings are nonspecific and could certainly

be due to

areas

> of focal soft tissue inflammation or infection. Correlation with clinical

symptoms is

> suggested as well as physical exam. A low-grade vascular malformation can

appear

> similar. These do not appear to be related to the joint space. Histologic

evaluation may

> ultimately be warranted. "

>

> Google is not helping me, I need a layman's interpretation. Please help me

if you can!

>

> Thank you,

>

>

>

[Guest guest]

Thanks, Harold.

My latest problems began in October when my Humira began to fail me. At first

the

morning stiffness came back, I didn't think much of it, by Thanksgiving I was

going to a

liquor store so I could get through the day, how depressing is that?

I have been on Enbrel which did not work good enough and Humira which as I said

worked

for 4 years. If I didn't have RA why was I pretty much flare free for all that

time?

The problem is this Rhem. has never seen me in full flare. Never seen me when

my feet

were so swollen I was icing them 5 to 6 times a day including overnight just to

survive.

Thankfully, I have a wonderful PCP who is doing PM on me, although I still have

pain, but

not like I would if I wasn't on something. I wouldn't want to know that person!

You must remember me, Harold. I had a baby boy in September of 2006 and you

were the

one who originally introduced me to But You Don't Look Sick over 4 years ago!

Love,

> >

> > Hi All,

> >

> > I just had MRIs done of the right and left hand and I could really use

> your help in

> > translating:

> >

> > Left Hand:

> >

> > " ....However, at the level of the fourth metacarpal head in the anterior

> soft tissues

> anterior

> > to the flexor tendon, there 7 mm nodule within the subcutaneous fat which

> is

> > hypointense on Tq, hyperintense on T2...this abuts the flexor tendon.

> >

> > ...There is some enhancement of the soft tissues of the distal aspect of

> the thumb and

> > fifth digit more so than the other fingers and I am not certain whether

> this is real or

> > artifactual. There is an additional enhancing nodule approx. 6 mm in size

> on the volar

> > surface of the hand at the level of the fifth metacarpal head, within the

> subcutaneous

> fat. "

> >

> > Right Hand:

> >

> > " ...At the distal hypothenar eminence anteriorly, within the subcutaneous

> tissue, there is

> > increased T2 and STIR signal present in an amorphous, ill defined region

> which

> measures

> > approximately 2 cm transverslely X 3 mm deep...Similarly, at the distal

> left fifth digit, at

> > the site of a vitamin E marker, there is an area of increased T2 signal

> seen within the

> soft

> > tissue surrounding the bone...Findings are nonspecific and could certainly

> be due to

> areas

> > of focal soft tissue inflammation or infection. Correlation with clinical

> symptoms is

> > suggested as well as physical exam. A low-grade vascular malformation can

> appear

> > similar. These do not appear to be related to the joint space. Histologic

> evaluation may

> > ultimately be warranted. "

> >

> > Google is not helping me, I need a layman's interpretation. Please help me

> if you can!

> >

> > Thank you,

> >

> >

> >

>

[Guest guest]

Hi, .

I don’t think the problem is that

your current rheumatologist hasn’t seen you in full flare. The

problem I see is that he doesn’t believe that the Humira really worked

for you and that it finally stopped working. Of course, we are not

limited to having only one thing wrong with us so maybe you do have some tendonitis

along with other things. However, that doesn’t explain why the

Humira worked for you. If the doctor won’t believe you and doesn’t

give a good reason for not believing you I think you should move on. You

already have plans to do that and I agree completely.

Please stay away from the liquor store as

much as you can. Both RA and the treatments for it can be hard on the

liver and that is only made worse with alcohol. You don’t want to

add liver problems to your other troubles if you can help it. I think

Prednisone can be hard on your body, but not as hard as liquor can be.

Maybe that will help to reduce some of the symptoms till you can meet with a

rheumatologist who will believe you.

It has been a while since our last

contacts and I’m sorry to hear that your RA is not doing so well for

you. I hope you can find a doctor who you can believe and who can believe

you. God bless.

Harold

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of

Sent: Thursday, May 29, 2008 11:52

AM

Rheumatoid Arthritis

Subject: Re:

Appt. with Rheum.

Thanks, Harold.

My latest problems began in October when my Humira began to fail me. At first

the

morning stiffness came back, I didn't think much of it, by Thanksgiving I was

going to a

liquor store so I could get through the day, how depressing is that?

I have been on Enbrel which did not work good enough and Humira which as I said

worked

for 4 years. If I didn't have RA why was I pretty much flare free for all that

time?

The problem is this Rhem. has never seen me in full flare. Never seen me when

my feet

were so swollen I was icing them 5 to 6 times a day including overnight just to

survive.

Thankfully, I have a wonderful PCP who is doing PM on me, although I still have

pain, but

not like I would if I wasn't on something. I wouldn't want to know that person!

You must remember me, Harold. I had a baby boy in September of 2006 and you

were the

one who originally introduced me to But You Don't Look Sick over 4 years ago!

Love,

[Guest guest]

Dear - http://arthritis.about.com/od/nodules/Rheumatoid_Nodules.htm On Thu, May 29, 2008 at 7:50 PM, Harold Van Tuyl <hvantuyl@...> wrote:

Hi, .

I don't think the problem is that

your current rheumatologist hasn't seen you in full flare. The

problem I see is that he doesn't believe that the Humira really worked

for you and that it finally stopped working. Of course, we are not

limited to having only one thing wrong with us so maybe you do have some tendonitis

along with other things. However, that doesn't explain why the

Humira worked for you. If the doctor won't believe you and doesn't

give a good reason for not believing you I think you should move on. You

already have plans to do that and I agree completely.

Please stay away from the liquor store as

much as you can. Both RA and the treatments for it can be hard on the

liver and that is only made worse with alcohol. You don't want to

add liver problems to your other troubles if you can help it. I think

Prednisone can be hard on your body, but not as hard as liquor can be.

Maybe that will help to reduce some of the symptoms till you can meet with a

rheumatologist who will believe you.

It has been a while since our last

contacts and I'm sorry to hear that your RA is not doing so well for

you. I hope you can find a doctor who you can believe and who can believe

you. God bless.

Harold

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of

Sent: Thursday, May 29, 2008 11:52

AM

Rheumatoid Arthritis

Subject: Re:

Appt. with Rheum.

Thanks, Harold.

My latest problems began in October when my Humira began to fail me. At first

the

morning stiffness came back, I didn't think much of it, by Thanksgiving I was

going to a

liquor store so I could get through the day, how depressing is that?

I have been on Enbrel which did not work good enough and Humira which as I said

worked

for 4 years. If I didn't have RA why was I pretty much flare free for all that

time?

The problem is this Rhem. has never seen me in full flare. Never seen me when

my feet

were so swollen I was icing them 5 to 6 times a day including overnight just to

survive.

Thankfully, I have a wonderful PCP who is doing PM on me, although I still have

pain, but

not like I would if I wasn't on something. I wouldn't want to know that person!

You must remember me, Harold. I had a baby boy in September of 2006 and you

were the

one who originally introduced me to But You Don't Look Sick over 4 years ago!

Love,

[Guest guest]

Hi Harold,

Just wanted to assure you that the liquor store option only took place before I

got proper

pain meds!

Now that I am on Opana, drinking is absolutely forbidden, I think it can kill

you. It actually

says on the bottle that if you chew or crush it because it is time release, that

it can kill

you!

So, don't worry, I have had no alcohol since being on this med! I was a rare

social drinker

and I missed not being able to have a daquiri (sp?) with my friends this past

holiday

weekend, but I would rather be on Opana!

Thanks for being concerned.

--- In Rheumatoid Arthritis , " Harold Van Tuyl " <hvantuyl@...>

wrote:

>

> Hi, .

>

>

>

> I don't think the problem is that your current rheumatologist hasn't seen

> you in full flare. The problem I see is that he doesn't believe that the

> Humira really worked for you and that it finally stopped working. Of

> course, we are not limited to having only one thing wrong with us so maybe

> you do have some tendonitis along with other things. However, that doesn't

> explain why the Humira worked for you. If the doctor won't believe you and

> doesn't give a good reason for not believing you I think you should move on.

> You already have plans to do that and I agree completely.

>

>

>

> Please stay away from the liquor store as much as you can. Both RA and the

> treatments for it can be hard on the liver and that is only made worse with

> alcohol. You don't want to add liver problems to your other troubles if you

> can help it. I think Prednisone can be hard on your body, but not as hard

> as liquor can be. Maybe that will help to reduce some of the symptoms till

> you can meet with a rheumatologist who will believe you.

>

>

>

> It has been a while since our last contacts and I'm sorry to hear that your

> RA is not doing so well for you. I hope you can find a doctor who you can

> believe and who can believe you. God bless.

>

>

>

> Harold

>

>

>

> _____

>

> From: Rheumatoid Arthritis

> [mailto:Rheumatoid Arthritis ] On Behalf Of

> Sent: Thursday, May 29, 2008 11:52 AM

> Rheumatoid Arthritis

> Subject: Re: Appt. with Rheum.

>

>

>

> Thanks, Harold.

>

> My latest problems began in October when my Humira began to fail me. At

> first the

> morning stiffness came back, I didn't think much of it, by Thanksgiving I

> was going to a

> liquor store so I could get through the day, how depressing is that?

>

> I have been on Enbrel which did not work good enough and Humira which as I

> said worked

> for 4 years. If I didn't have RA why was I pretty much flare free for all

> that time?

>

> The problem is this Rhem. has never seen me in full flare. Never seen me

> when my feet

> were so swollen I was icing them 5 to 6 times a day including overnight just

> to survive.

>

> Thankfully, I have a wonderful PCP who is doing PM on me, although I still

> have pain, but

> not like I would if I wasn't on something. I wouldn't want to know that

> person!

>

> You must remember me, Harold. I had a baby boy in September of 2006 and you

> were the

> one who originally introduced me to But You Don't Look Sick over 4 years

> ago!

>

> Love,

>

>

>