Re: Lurker Would Like Opinions (long /cross-post)

[Guest guest]

----- Original Message -----

From: Diane Flemings

> He simply diagnosed polyarthralgia (pain in more than one

joint), did not change or add any meds, and told me to have my PCP monitor

blood tests periodically. He would see me again if needed.

You definitely need to find another rheumatologist. He doesn't sound to me like

he has a clue what he's talking about.

> Sed and C-Reactive Protein were elevated, but not outrageous.

Sed Rate does not have to be outrageous. If it's elevated at all, it shows

there's an inflammation in your body somewhere. The prednisone alone is enough

to bring down some of the inflammation so it stands to reason the labs would

change. Heck, prednisone has brought my liver enzyme levels down to the high

end of normal after six years of being very high (also autoimmune).

> PCP repeated all labs, and based on increased levels and

increasing pain in my shoulders, neck, upper back, and feet, she diagnosed

rheumatoid arthritis. I also saw a podiatrist around that time that

confirmed arthritis in my feet

Sounds like a better doc than the rheumy.

>Based on the exam and lab

work (which was done while on prednisone), he said he was not sure that RA

was a correct diagnosis, nor did he feel that I had fibromyalgia. He sent

me for a nuclear bone scan and more blood tests. At my second visit, he

told me that the bone scan only showed some degeneration of the elbows, and

changes in the lower jaw.

Did he do an exam for fibro? Maybe he's one of those docs that don't believe it

exists. I sure wouldn't put a lot of store in what this doctor said. Just

because he graduated from medical school, it does NOT mean he was at the top of

his class. :-)

> The blood work ruled out Lyme disease, Lupus, and

any type of muscle wasting disease process.

If you've been on any antibiotics, that could give you a false negative for

Lyme. You do NOT have to have a positive ANA to have Lupus. People can have it

for a long time with negative blood test results.

I would definitely get a second rheumy's opinions about all of this.

Nina

[Guest guest]

----- Original Message -----

From: Diane Flemings

> He simply diagnosed polyarthralgia (pain in more than one

joint), did not change or add any meds, and told me to have my PCP monitor

blood tests periodically. He would see me again if needed.

You definitely need to find another rheumatologist. He doesn't sound to me like

he has a clue what he's talking about.

> Sed and C-Reactive Protein were elevated, but not outrageous.

Sed Rate does not have to be outrageous. If it's elevated at all, it shows

there's an inflammation in your body somewhere. The prednisone alone is enough

to bring down some of the inflammation so it stands to reason the labs would

change. Heck, prednisone has brought my liver enzyme levels down to the high

end of normal after six years of being very high (also autoimmune).

> PCP repeated all labs, and based on increased levels and

increasing pain in my shoulders, neck, upper back, and feet, she diagnosed

rheumatoid arthritis. I also saw a podiatrist around that time that

confirmed arthritis in my feet

Sounds like a better doc than the rheumy.

>Based on the exam and lab

work (which was done while on prednisone), he said he was not sure that RA

was a correct diagnosis, nor did he feel that I had fibromyalgia. He sent

me for a nuclear bone scan and more blood tests. At my second visit, he

told me that the bone scan only showed some degeneration of the elbows, and

changes in the lower jaw.

Did he do an exam for fibro? Maybe he's one of those docs that don't believe it

exists. I sure wouldn't put a lot of store in what this doctor said. Just

because he graduated from medical school, it does NOT mean he was at the top of

his class. :-)

> The blood work ruled out Lyme disease, Lupus, and

any type of muscle wasting disease process.

If you've been on any antibiotics, that could give you a false negative for

Lyme. You do NOT have to have a positive ANA to have Lupus. People can have it

for a long time with negative blood test results.

I would definitely get a second rheumy's opinions about all of this.

Nina

[Guest guest]

I'd get a second opinion if I were you. Also, are you in an HMO? I went

through something similar with an HMO rheumatologist who could not diagnose me

based on labs or patient report. He said he had to observe directly extreme

symmetrical joint swelling for six months, which meant taking off work every

time I had swelling and letting him look at my hands. After I went in the first

time and he told me it wasn't enough swelling...I quit going to him. I was in

an HMO and had no other choice of rheumatologist.

Diane Flemings <momof3girls@...> wrote:

First of all, sorry for the cross-posting, but I would like as much input as

possible.

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

Messenger

Show us what our next emoticon should look like. Join the fun.

[Guest guest]

I'd get a second opinion if I were you. Also, are you in an HMO? I went

through something similar with an HMO rheumatologist who could not diagnose me

based on labs or patient report. He said he had to observe directly extreme

symmetrical joint swelling for six months, which meant taking off work every

time I had swelling and letting him look at my hands. After I went in the first

time and he told me it wasn't enough swelling...I quit going to him. I was in

an HMO and had no other choice of rheumatologist.

Diane Flemings <momof3girls@...> wrote:

First of all, sorry for the cross-posting, but I would like as much input as

possible.

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

Messenger

Show us what our next emoticon should look like. Join the fun.

[Guest guest]

Defintly get a second oppinion from a diffrent Rheum. I'm no expert but a second

op never hurts.

Jen in FL

In Order To Live Life, You Must Enjoy Life.

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

Messenger

Show us what our next emoticon should look like. Join the fun.

[Guest guest]

Defintly get a second oppinion from a diffrent Rheum. I'm no expert but a second

op never hurts.

Jen in FL

In Order To Live Life, You Must Enjoy Life.

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

Messenger

Show us what our next emoticon should look like. Join the fun.

[Guest guest]

, is this that doctor from H*ll that you've told us about

before? Six months of extreme symmetrical joint swelling means six

months of almost unbearable pain.

When my RA started, it was not symmetrical. It jumped around from joint

to joint. One place would hurt for a few days, then another. It sounded

like a crazy disease, even to me. I remember when I had only one finger

swollen, and I went to my PCP for shingles and showed her the finger.

She asked if I had RA in my family. It took the rheumatologist longer

than that to diagnose me because he thought at first that it was

something to do with diabetes.

Sue

On Friday, April 1, 2005, at 12:53 AM, wrote:

>

> I'd get a second opinion if I were you. Also, are you in an HMO? I

> went through something similar with an HMO rheumatologist who could

> not diagnose me based on labs or patient report. He said he had to

> observe directly extreme symmetrical joint swelling for six months,

> which meant taking off work every time I had swelling and letting him

> look at my hands. After I went in the first time and he told me it

> wasn't enough swelling...I quit going to him. I was in an HMO and had

> no other choice of rheumatologist.

[Guest guest]

, is this that doctor from H*ll that you've told us about

before? Six months of extreme symmetrical joint swelling means six

months of almost unbearable pain.

When my RA started, it was not symmetrical. It jumped around from joint

to joint. One place would hurt for a few days, then another. It sounded

like a crazy disease, even to me. I remember when I had only one finger

swollen, and I went to my PCP for shingles and showed her the finger.

She asked if I had RA in my family. It took the rheumatologist longer

than that to diagnose me because he thought at first that it was

something to do with diabetes.

Sue

On Friday, April 1, 2005, at 12:53 AM, wrote:

>

> I'd get a second opinion if I were you. Also, are you in an HMO? I

> went through something similar with an HMO rheumatologist who could

> not diagnose me based on labs or patient report. He said he had to

> observe directly extreme symmetrical joint swelling for six months,

> which meant taking off work every time I had swelling and letting him

> look at my hands. After I went in the first time and he told me it

> wasn't enough swelling...I quit going to him. I was in an HMO and had

> no other choice of rheumatologist.

[Guest guest]

Yes, this is the rheumatologist from H*ll that I talked about before. I have an

appointment with a new one on Monday. I have been afraid to go back to any

since the bad one, plus I was getting good control with diet/lifestyle

management and Celebrex. That's just not working anymore.

Sue <marysue@...> wrote:, is this that doctor from H*ll

that you've told us about

before? Six months of extreme symmetrical joint swelling means six

months of almost unbearable pain.

When my RA started, it was not symmetrical. It jumped around from joint

to joint. One place would hurt for a few days, then another. It sounded

like a crazy disease, even to me. I remember when I had only one finger

swollen, and I went to my PCP for shingles and showed her the finger.

She asked if I had RA in my family. It took the rheumatologist longer

than that to diagnose me because he thought at first that it was

something to do with diabetes.

Sue

On Friday, April 1, 2005, at 12:53 AM, wrote:

>

> I'd get a second opinion if I were you. Also, are you in an HMO? I

> went through something similar with an HMO rheumatologist who could

> not diagnose me based on labs or patient report. He said he had to

> observe directly extreme symmetrical joint swelling for six months,

> which meant taking off work every time I had swelling and letting him

> look at my hands. After I went in the first time and he told me it

> wasn't enough swelling...I quit going to him. I was in an HMO and had

> no other choice of rheumatologist.

[Guest guest]

Yes, this is the rheumatologist from H*ll that I talked about before. I have an

appointment with a new one on Monday. I have been afraid to go back to any

since the bad one, plus I was getting good control with diet/lifestyle

management and Celebrex. That's just not working anymore.

Sue <marysue@...> wrote:, is this that doctor from H*ll

that you've told us about

before? Six months of extreme symmetrical joint swelling means six

months of almost unbearable pain.

When my RA started, it was not symmetrical. It jumped around from joint

to joint. One place would hurt for a few days, then another. It sounded

like a crazy disease, even to me. I remember when I had only one finger

swollen, and I went to my PCP for shingles and showed her the finger.

She asked if I had RA in my family. It took the rheumatologist longer

than that to diagnose me because he thought at first that it was

something to do with diabetes.

Sue

On Friday, April 1, 2005, at 12:53 AM, wrote:

>

> I'd get a second opinion if I were you. Also, are you in an HMO? I

> went through something similar with an HMO rheumatologist who could

> not diagnose me based on labs or patient report. He said he had to

> observe directly extreme symmetrical joint swelling for six months,

> which meant taking off work every time I had swelling and letting him

> look at my hands. After I went in the first time and he told me it

> wasn't enough swelling...I quit going to him. I was in an HMO and had

> no other choice of rheumatologist.

[Guest guest]

Thank you to all that responded. I will definately be seeking a second

(and third if needed) opinion. It's so great to be able get input from

people who understand the frustration. My family tries to understand, and

help as much as possible, but it's just not the same

Diane - in NJ

[Guest guest]

Thank you to all that responded. I will definately be seeking a second

(and third if needed) opinion. It's so great to be able get input from

people who understand the frustration. My family tries to understand, and

help as much as possible, but it's just not the same

Diane - in NJ

[Guest guest]

Welcome, Diane! I would seek another opinion if I were you. I believe that

sometimes you can have RA but not test positive for it, especially in the

beginning

stages. I went to a wonderful Rheumy who has sadly retired but he believed in

treating people like they had RA if they had most of the symptoms. There are

still so

many different types of " -itises " that doctors don't understand and no about

yet.

Good luck, and I am sure you will find lots of support here!

--- In Rheumatoid Arthritis , " Diane Flemings " <momof3girls@s...>

wrote:

> First of all, sorry for the cross-posting, but I would like as much input as

> possible.

>

> Second, I'll introduce myself, and give some background since I am an active

> lurker, lol. I am Diane, 38 yr old SAHM to 3 girls, in Bellmawr New Jersey.

> I have had intermittent pain in various joints for as long as I can remember

> - as a child, my mother was always told it was " growing pains " Around the

> end of 2002, the pain in my shoulders and upper back became much worse, so I

> mentioned it to my then PCP. He wrote it off as stress, and did nothing. I

> changed PCP's in June of 2003 - mentioned the pain to the new doc - she sent

> me for lab work - CBC, Sed rate, RF, ANA, C-Reactive Protein, etc. Sed and

> C-Reactive Protein were elevated, but not outrageous. Dr started me on

> ibuprofen and prednisone. Both gave some relief. Two months later, pain

> was all over, and bad enough to send me to the ER, where they gave me a shot

> of Demerol. PCP repeated all labs, and based on increased levels and

> increasing pain in my shoulders, neck, upper back, and feet, she diagnosed

> rheumatoid arthritis. I also saw a podiatrist around that time that

> confirmed arthritis in my feet along with bone spurs and plantar fasciitis

> in both feet. Over the past 2 yrs, my pain and fatigue have continued to

> increase, and meds have been changed at times hoping to find something that

> works. I finally asked my PCP to send me to a rheumatologist.

>

> Now here's where I'd like some opinions. - I saw the rheumy this past

> month - 2 visits 3 weeks apart. During the first visit, he reviewed recent

> lab work, asked about my pain, and examined me. Based on the exam and lab

> work (which was done while on prednisone), he said he was not sure that RA

> was a correct diagnosis, nor did he feel that I had fibromyalgia. He sent

> me for a nuclear bone scan and more blood tests. At my second visit, he

> told me that the bone scan only showed some degeneration of the elbows, and

> changes in the lower jaw. The blood work ruled out Lyme disease, Lupus, and

> any type of muscle wasting disease process. Basically, he said he did not

> know what was wrong, but did not want to diagnose RA because according to

> him I don't meet the criteria, and some of my pain is intermittent. My RF

> is negative, but my sed rate and C-reactive protein continue to be elevated,

> but not enough. He simply diagnosed polyarthralgia (pain in more than one

> joint), did not change or add any meds, and told me to have my PCP monitor

> blood tests periodically. He would see me again if needed. I received a

> copy of the rheumy's report, and in it he states - shoulder crepitus and

> soreness, tennis elbow, early osteoarthritic changes in the finger joints,

> bursitis in the hips - especially the right, and an uncomfortable feeling

> with palpation in the occipital area and both second ribs, but not true

> fibromyalgia tender points.

>

> I am stiff for at least 2 hours when I first wake up in the morning, I have

> constant pain in my back and shoulders which is worse after activity, pain

> in both feet daily, and pain in my knees and hands that comes and goes

> depending on my activity level. I can't sit for more than 20 minutes or so

> without pain and stiffness, but I can't stand for too long either due to the

> pain in my feet. My PCP is great, and is really trying to help my pain.

> Should I ask her to send me to a different rheumy, or to someone else -

> maybe an orthopedist? I feel like I'm at the end of my rope, and my body is

> falling apart on me. What should I do?

>

> Thanks in advance for any input, and thanks for reading,

>

> Diane - in NJ

[Guest guest]

I don't know where this has been but it just came to me today. I vote for seeing a different rheumatologist. Lab work is only one of the seven criteria for diagnosing RA, and damage seen on x-rays is another one. The other five are from examination and patient history. Any four are sufficient to diagnose RA and I think you are likely to have at least four. Some doctors might consider calling it Palindromic Arthritis because some of your pain comes and goes. Whatever it is called, you need treatment for it and relief from your pain. Once you get that you also need to get off Prednisone. Many people are helped by Methotrexate and I'm surprised you have not been given that (but if you get it, also take Folic Acid and/or Leucovorin).

I think you might not be too far from s Hopkins and going to a major clinic like that or the Mayo Clinic could also be very helpful. You know that you are ill and need a specialist. I think it should be a rheumatologist but I could be wrong on that. Whatever you decide I hope you get proper treatment soon. God bless.

----- Original Message -----

From: Diane Flemings

arthritis ; Rheumatoid_Arthritis ; Fibromyalgia_Support_Group ; Fibro CFS

Sent: Thursday, March 31, 2005 10:15 PM

Subject: Lurker Would Like Opinions (long /cross-post)

First of all, sorry for the cross-posting, but I would like as much input as possible.

Second, I'll introduce myself, and give some background since I am an active lurker, lol. I am Diane, 38 yr old SAHM to 3 girls, in Bellmawr New Jersey. I have had intermittent pain in various joints for as long as I can remember - as a child, my mother was always told it was "growing pains" Around the end of 2002, the pain in my shoulders and upper back became much worse, so I mentioned it to my then PCP. He wrote it off as stress, and did nothing. I changed PCP's in June of 2003 - mentioned the pain to the new doc - she sent me for lab work - CBC, Sed rate, RF, ANA, C-Reactive Protein, etc. Sed and C-Reactive Protein were elevated, but not outrageous. Dr started me on ibuprofen and prednisone. Both gave some relief. Two months later, pain was all over, and bad enough to send me to the ER, where they gave me a shot of Demerol. PCP repeated all labs, and based on increased levels and increasing pain in my shoulders, neck, upper back, and feet, she diagnosed rheumatoid arthritis. I also saw a podiatrist around that time that confirmed arthritis in my feet along with bone spurs and plantar fasciitis in both feet. Over the past 2 yrs, my pain and fatigue have continued to increase, and meds have been changed at times hoping to find something that works. I finally asked my PCP to send me to a rheumatologist.

Now here's where I'd like some opinions. - I saw the rheumy this past month - 2 visits 3 weeks apart. During the first visit, he reviewed recent lab work, asked about my pain, and examined me. Based on the exam and lab work (which was done while on prednisone), he said he was not sure that RA was a correct diagnosis, nor did he feel that I had fibromyalgia. He sent me for a nuclear bone scan and more blood tests. At my second visit, he told me that the bone scan only showed some degeneration of the elbows, and changes in the lower jaw. The blood work ruled out Lyme disease, Lupus, and any type of muscle wasting disease process. Basically, he said he did not know what was wrong, but did not want to diagnose RA because according to him I don't meet the criteria, and some of my pain is intermittent. My RF is negative, but my sed rate and C-reactive protein continue to be elevated, but not enough. He simply diagnosed polyarthralgia (pain in more than one joint), did not change or add any meds, and told me to have my PCP monitor blood tests periodically. He would see me again if needed. I received a copy of the rheumy's report, and in it he states - shoulder crepitus and soreness, tennis elbow, early osteoarthritic changes in the finger joints, bursitis in the hips - especially the right, and an uncomfortable feeling with palpation in the occipital area and both second ribs, but not true fibromyalgia tender points.

I am stiff for at least 2 hours when I first wake up in the morning, I have constant pain in my back and shoulders which is worse after activity, pain in both feet daily, and pain in my knees and hands that comes and goes depending on my activity level. I can't sit for more than 20 minutes or so without pain and stiffness, but I can't stand for too long either due to the pain in my feet. My PCP is great, and is really trying to help my pain. Should I ask her to send me to a different rheumy, or to someone else - maybe an orthopedist? I feel like I'm at the end of my rope, and my body is falling apart on me. What should I do?

Thanks in advance for any input, and thanks for reading,

Diane - in NJ