Re: [SPAM]Re: Hello all

[Guest guest]

Someone else mentioned Lyme to me recently also. I don't know if they've done a Lyme test. I'll check with the rheumatologist. Thanks.

Kim

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

From: Harold Van Tuyl

Rheumatoid Arthritis

Sent: Friday, May 30, 2008 12:43 PM

Subject: RE: [sPAM]Re: Hello all

Kim,

I am fortunate in that my diagnoses were pretty straightforward and treatments have been generally effective. I guess that’s actually fairly common and because most people are fairly well satisfied with their treatment they either don’t come to message boards or don’t stay. I’m retired so message boards are sort of my hobby rather than wanting to do other things with my time. Many people who come to and stay on message boards have experiences roughly like yours. Some of them go to clinics or teaching hospitals like Mayo Clinic, Cleveland Clinic, of s Hopkins where specialists in multiple disciplines examine them and consult to try to determine a diagnosis or at least a path forward toward a diagnosis. Sometimes they wind up with confirmation that they have RA and a new treatment protocol, and sometimes they wind up with a new diagnosis and treatment protocol. Occasionally they are left with uncertainty, but at least they tried. I’ve never needed to go that far but because of your situation you might try to see if you can manage this kind of an examination. Otherwise I don’t see anything really wrong with what you are doing now. I just wish it were more successful. God bless.

PS. I presume you have been tested for Lyme disease by the newer and more sensitive test and also for other things that can often be confused with RA. You should get copies of all your lab work because sometimes you can see things the doctors miss, or recommend tests that were not performed. God bless.

Harold

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Kim onSent: Friday, May 23, 2008 6:22 AMRheumatoid Arthritis Subject: [sPAM]Re: Hello all

Harold & Deborah,

Thank you for taking so much time to explain things to me. I'm just frustrated and confused. I feel half way decent (only pain in hands and feet) one day then miserable, hurting everywhere, the next. Doctors seem to be throwing drugs at me, but aren't sure what is wrong. I have sypmptoms that don't seem to fit anywhere. It might sound strange, but I was so happy when my dr. called me and said that I had ra. Finally I had a diagnosis. Now, I'm just not sure.

It sounds like I may have to find a diagnosis through the treatments rather than the tests. I am amazed at how many people are out there that have experienced the same thing. I guess that's why it is called "practicing" medicine.

I really appreciate all the support and good information.

Kim

__

[Guest guest]

Reni,

So true about ra. I do know that some people don't respond and that the treatments are trial and error...I've been reading a lot. Having ra definitely would not be a blessing, but at least I'd know what I'm dealing with. My mother-in-law is so bad with ra that she can barely walk. Unfortunately treatments came too late for her. I don't want to end up in her situation.

I totally agree about the doctors, but I'm probably more untrusting of them then most people. I had five doctors tell me as a young adult that my chronic pelvic pain was in my head or that I was too young to be sick before I found one to finally treat me and end my struggle. That took six years. My mother had an undiagnosed superior vena cava for eight years. It wasn't because she didn't go to the doctors that she didn't have a diagnosis. I took her from specialist to specialist (probably 15 total) year after year and because it was ruled out early on with an inaccurate test, no one ever checked again. She had all the classic symptoms, but we had never heard of it and most doctors have never seen it before in their practice. It was finally found when she passed out in the hospital cafeteria while at the doctors appointment for a totally unrelated issue. The er did a routine xray and saw something in her neck. A follow-up CT revealed the blockage. Now, four years later she's having mild symptoms again. We went to a specialist who called her sypmtoms "unremarkable", but did a CT scan to humor her and the blockage is back. I don't have a lot of faith in doctors, but I don't have a choice. I'm just glad that there is a place like this to come to get and share information.

Thank you.

Kim

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

From: Reni

Rheumatoid Arthritis

Sent: Friday, May 30, 2008 2:49 PM

Subject: RE: [sPAM]Re: Hello all

Hi Kim,

I have been reading all the feed back you have gotten and think how nice it is we all have one another to rally round and support when we need it here! I am sure the not knowing and trying to find answers is hard on you, but i must confess i am not sure the dx of ra is so wonderful either. Even when you get the dx of ra it seems to me that the rat race begins all over again and may constantly be a struggle. Harold and some of the others are quiet settled in their rx threapies and doing well, but there are many of us who never get the rx cocktail correct for remission o rsubsidance of the progressive disease of rhuematoid. It is the problems of everyone is so differnet and ra strikes in so many differfent fronts and ways in and outs and curve balls. Then you throw the doctors in there too and they all have different approaches and techniques, well we all just have at some time to face the fact that ra is a progressive nasty disease and there is no cure. Sorry to be the bearer of bad tidings just the facts. But there is always hope with new drugs coming out. so hang in there and just keep looking for answers, and build a bridge and get across the symptoms and into the prevention from any more joint deteriation. DeNicola- <stephdenicola > wrote:

Hi Kim,

This is . I'm 30 years old and was dx'd with JRA with adult persitence in 1999 after 2.5 months of symptoms and 13 doctors. I was finally dx'd by a rheumy at a teaching hospital. I have been stable on Remicade, Methotrexate, Folic Acid & Ibuprofen. I've been on this "cocktail" for 8 years and haven't had any side effects. Keep fighting for the best care possible. It can mean a big difference -- I've had really great docs & really awful ones.

Take care,

Steph in Cville, VA

Thank you for taking so much time to explain things to me. I'm just frustrated and confused. I feel half way decent (only pain in hands and feet) one day then miserable, hurting everywhere, the next. Doctors seem to be throwing drugs at me, but aren't sure what is wrong. I have sypmptoms that don't seem to fit anywhere. It might sound strange, but I was so happy when my dr. called me and said that I had ra. Finally I had a diagnosis. Now, I'm just not sure. It sounds like I may have to find a diagnosis through the treatments rather than the tests. I am amazed at how many people are out there that have experienced the same thing. I guess that's why it is called "practicing" medicine. I really appreciate all the support and good information.

Kim

..

[Guest guest]

In my opinion the usual rheumatoid factor

test can be good for diagnosis if it is high but otherwise it is

meaningless. A newer test is the anti-ccp

http://arthritis.about.com/od/radiagnosis/f/anticcp.htm

and again I think of it as a diagnostic

tool if high but meaningless otherwise. Some people say the level of

these tests indicate how severe RA is but others see no correlation with

severity of the disease. Many people test negative by either or both

tests but have other symptoms of RA and respond well to RA treatments.

With the confusion about thyroid tests I

suspect that your thyroid could be a contributor to your problems but is not

the main source of your problems. Of course, I’m not medically

trained and your doctors have to make that judgment for you.

I think Advil makes many products and I’m

not sure what is in all of them. At least some contain Ibuprofen and that

is a pretty good anti-inflammatory for an OTC medication. Apparently that

didn’t help you very much so maybe you don’t have an inflammatory

disease like RA, or perhaps you need a stronger anit-inflammatory. I

think Prednisone is a stronger anti-inflammatory and it might help to see if

that will relieve some of your symptoms. It has many bad side effects,

especially when taken in high doses for long times, but often the benefits far

outweigh the negatives. It is often given as a pack of 21 pills with 6

taken the first day, and reduced by one each day till you run out. If

your symptoms improve early during the six days but get worse toward the end

then it is quite likely you have some inflammatory condition, and it could be

RA of hundreds of other things. It would be nice if you had an accurate

diagnosis but even more important is getting effective treatment. Unfortunately

this often requires trial and error to get your body to tell you whether a

treatment is working or not. God bless.

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

Sent: Thursday, May 22, 2008 5:06

PM

Rheumatoid Arthritis

Subject: [sPAM]Re:

Hello all

Thank you all again for all the advice.

I've had a difficult couple of weeks. Friday I was in

so much pain that nothing was working. I took baths, Advil, used ice, but

nothing was successful. I was up all night and started having chest pain

and dizziness early in the morning. When I started having diarrhea I woke

my husband up and we went to the hospital. My blood pressure was

extremely high, but my heart was okay except for my fast heart rate

(100+) which I've had for almost a year.

The er dr. was concerned about my thyroid and added it to

the bloodwork. My regular dr. called me Monday to say that I had

hyopthyroidism and that I had to start medication. Wednesday I

had my first appointment with the rhematologist. He said that my

symptoms didn't fit hypothyroidism, but they did fit

hyperthyroidism. Also, he wasn't sure about the arthritis because my

bloodwork was borderline and my symptoms were pretty good that day. He

ended up doing a lot of bloodwork. That night, my regular dr. called me

again and said that my thyroid test came back and was at the

other end of the spectrum, but on the lower end of normal.

There was such a discrepancy in the two thyroid test that they didn't know what

was going on. I have no clue what is going on, but I'm still in pain and

am frustrated.

I have had some better days. Usually cool, dry days

are good. Rainy, stormy days are very bad. The day I saw the

rhematologist, I had very little pain and only mild inflamation. I think

he is thinking fybromyalgia instead of ra, but I'm wondering if it could be

both. My fingers, toes, and wrists are so sore.

Does anyone have any ideas on the thyroid? I looked up

the symptoms and I don't fit hypothyroidism, but I was curious, so I looked up

the hyperthyroid sypmtoms. I fit 90% of them. What about the

ra? If my tests are borderline what does that mean?

Thanks.

Kim

,_._,___

[Guest guest]

Kim,

I am fortunate in that my diagnoses were

pretty straightforward and treatments have been generally effective. I

guess that’s actually fairly common and because most people are fairly

well satisfied with their treatment they either don’t come to message

boards or don’t stay. I’m retired so message boards are sort

of my hobby rather than wanting to do other things with my time. Many

people who come to and stay on message boards have experiences roughly like

yours. Some of them go to clinics or teaching hospitals like Mayo Clinic,

Cleveland Clinic, of s Hopkins where specialists in multiple disciplines

examine them and consult to try to determine a diagnosis or at least a path

forward toward a diagnosis. Sometimes they wind up with confirmation that

they have RA and a new treatment protocol, and sometimes they wind up with a

new diagnosis and treatment protocol. Occasionally they are left with

uncertainty, but at least they tried. I’ve never needed to go that

far but because of your situation you might try to see if you can manage this

kind of an examination. Otherwise I don’t see anything really wrong

with what you are doing now. I just wish it were more successful.

God bless.

PS. I presume you have been tested

for Lyme disease by the newer and more sensitive test and also for other things

that can often be confused with RA. You should get copies of all your lab

work because sometimes you can see things the doctors miss, or recommend tests

that were not performed. God bless.

Harold

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

Sent: Friday, May 23, 2008 6:22 AM

Rheumatoid Arthritis

Subject: [sPAM]Re:

Hello all

Harold & Deborah,

Thank you for taking so much time to explain things to

me. I'm just frustrated and confused. I feel half way decent (only

pain in hands and feet) one day then miserable, hurting everywhere, the

next. Doctors seem to be throwing drugs at me, but aren't sure what is

wrong. I have sypmptoms that don't seem to fit anywhere. It might

sound strange, but I was so happy when my dr. called me and said that I had

ra. Finally I had a diagnosis. Now, I'm just not sure.

It sounds like I may have to find a diagnosis through the

treatments rather than the tests. I am amazed at how many people are out

there that have experienced the same thing. I guess that's why it is

called " practicing " medicine.

I really appreciate all the support and good information.

Kim

__

[Guest guest]

Hi Kim,

This is . I'm 30 years old and was dx'd with JRA with adult persitence in 1999 after 2.5 months of symptoms and 13 doctors. I was finally dx'd by a rheumy at a teaching hospital. I have been stable on Remicade, Methotrexate, Folic Acid & Ibuprofen. I've been on this "cocktail" for 8 years and haven't had any side effects. Keep fighting for the best care possible. It can mean a big difference -- I've had really great docs & really awful ones.

Take care,

Steph in Cville, VA

Thank you for taking so much time to explain things to me. I'm just frustrated and confused. I feel half way decent (only pain in hands and feet) one day then miserable, hurting everywhere, the next. Doctors seem to be throwing drugs at me, but aren't sure what is wrong. I have sypmptoms that don't seem to fit anywhere. It might sound strange, but I was so happy when my dr. called me and said that I had ra. Finally I had a diagnosis. Now, I'm just not sure. It sounds like I may have to find a diagnosis through the treatments rather than the tests. I am amazed at how many people are out there that have experienced the same thing. I guess that's why it is called "practicing"

medicine. I really appreciate all the support and good information.

Kim

..

[Guest guest]

Hi Kim, I have been reading all the feed back you have gotten and think how nice it is we all have one another to rally round and support when we need it here! I am sure the not knowing and trying to find answers is hard on you, but i must confess i am not sure the dx of ra is so wonderful either. Even when you get the dx of ra it seems to me that the rat race begins all over again and may constantly be a struggle. Harold and some of the others are quiet settled in their rx threapies and doing well, but there are many of us who never get the rx cocktail correct for remission o rsubsidance of the progressive disease of rhuematoid. It is the problems of everyone is so differnet and ra strikes in so many differfent fronts and ways in and outs and curve balls. Then you throw the doctors in there too and they all have

different approaches and techniques, well we all just have at some time to face the fact that ra is a progressive nasty disease and there is no cure. Sorry to be the bearer of bad tidings just the facts. But there is always hope with new drugs coming out. so hang in there and just keep looking for answers, and build a bridge and get across the symptoms and into the prevention from any more joint deteriation. DeNicola- <stephdenicola@...> wrote: Hi Kim, This is . I'm 30 years old and was dx'd with JRA with adult persitence in 1999 after 2.5 months of symptoms and 13 doctors. I was finally dx'd by a rheumy at a teaching hospital. I have been stable on Remicade, Methotrexate, Folic Acid & Ibuprofen. I've been on this "cocktail" for 8 years and haven't had any side effects. Keep fighting for the best care possible. It can mean a big difference -- I've had really great docs & really awful ones. Take care, Steph in Cville, VA Thank you for taking so much time to explain things to me. I'm just frustrated and confused. I feel half way decent (only pain in hands and feet) one day then miserable, hurting everywhere, the next. Doctors seem to be throwing drugs at me, but aren't sure what is wrong. I have sypmptoms that don't seem to fit anywhere. It might sound strange, but I was so happy when my dr. called me and said that I had ra. Finally I had a diagnosis. Now, I'm just not sure. It sounds like I may have to find a diagnosis through the treatments rather than the tests. I am amazed at how many people are out there that have experienced the same thing. I guess that's why it is called "practicing" medicine. I really appreciate all the support and good information. Kim .