Re: Question about diagnosis - lupus

June 29, 2006

Jodi

Typical diagnoses for any autoimmume is about 7 years. It take a while and they

will want to rule out everything else in the world.

With me, I was having issues, like I couldn't get down the stairs in the morning

because my ankles wouldn't bend, so I took them like a 100 yr old lady, one step

at a time. I was having trouble sleeping because my shoulders hurt so much. I

thought we just needed a new bed. Then about 4 yrs ago, I went to a water park

and hit the little bone on the inside of my elbow as I went down a slide. It

hurt a little bit, but I didn't think anything of it. Then 2 days later I

couldn't bend the elbow (like when you eat or go to answer the phone) and I

couldn't extend it all the way straight. I thought I had chipped a bone so I

went to my GP. Told him to hurry and fix it, I had a craft show to do that

weekend! lol I never went to the dr.......maybe once every 2 yrs for a check

up or if I got pheumonia. I told him that there were other things that were

bothering me but we would discuss them next time I came in...haha. He said no,

tell me what is up. I told him and he said, it, combined with the swollen

synovium (what was wrong with my elbow) was all classic RA, Lupus. We did blood

work (+ANA) and then check xray, urine, and EKG. I go to a rheumy but am going

to stop and either just see my GP or a pain specialist. My rheumy doesn't think

this is RA since my SED rate is only 11 but heck he doesn't even examine me! I

am going to go back to my neurologist and relook at the MS issue.......

One of the best things you can do for you, is to keep a diary of your health.

When I see a new dr. I take a paper that has listed chronologically everything

that has happened medically, any flares, how long they went on, what joint they

affected and even barometric pressures. I also always get a copy of any tests

performed and keep those including xray reports, anything that you think is

important. The drs will really appreciate it! When you start seeing more than

one dr, you lose some of your continuation of care so you have to make sure that

every one of them know what the other is doing, including meds.

HTH

Hugs

July 7, 2006

Hi ,

I didn't receive an e-mail with your response. I am sorry I missed

it. Thank you very much for the feedback. It is a good idea to keep a

diary. I also have diabetes, so that may come in handy.

My sed rate has fluctuated each time the doctor has checked it over

the past year. It has been elevated twice.

Do your symptoms flare up on different days or are they constant?

Jodi

--- In , " Bickford " <Bickfordla@...>

wrote:

>

> Jodi

> Typical diagnoses for any autoimmume is about 7 years. It take a

while and they will want to rule out everything else in the world.

> With me, I was having issues, like I couldn't get down the stairs

in the morning because my ankles wouldn't bend, so I took them like a

100 yr old lady, one step at a time. I was having trouble sleeping

because my shoulders hurt so much. I thought we just needed a new

bed. Then about 4 yrs ago, I went to a water park and hit the little

bone on the inside of my elbow as I went down a slide. It hurt a

little bit, but I didn't think anything of it. Then 2 days later I

couldn't bend the elbow (like when you eat or go to answer the phone)

and I couldn't extend it all the way straight. I thought I had

chipped a bone so I went to my GP. Told him to hurry and fix it, I

had a craft show to do that weekend! lol I never went to the

dr.......maybe once every 2 yrs for a check up or if I got

pheumonia. I told him that there were other things that were

bothering me but we would discuss them next time I came in...haha.

He said no, tell me what is up. I told him and he said, it, combined

with the swollen synovium (what was wrong with my elbow) was all

classic RA, Lupus. We did blood work (+ANA) and then check xray,

urine, and EKG. I go to a rheumy but am going to stop and either

just see my GP or a pain specialist. My rheumy doesn't think this is

RA since my SED rate is only 11 but heck he doesn't even examine me!

I am going to go back to my neurologist and relook at the MS

issue.......

> One of the best things you can do for you, is to keep a diary of

your health. When I see a new dr. I take a paper that has listed

chronologically everything that has happened medically, any flares,

how long they went on, what joint they affected and even barometric

pressures. I also always get a copy of any tests performed and keep

those including xray reports, anything that you think is important.

The drs will really appreciate it! When you start seeing more than

one dr, you lose some of your continuation of care so you have to

make sure that every one of them know what the other is doing,

including meds.

> HTH

> Hugs

>

July 7, 2006

Jodi

I definately flare! I can always tell when the barometric pressure changes as I

really hurt then. When we had the hurricanes a few years ago, I was MISERABLE!

lol Just remember to take one day at a time.

One of the reasons to keep a diary is that when you flare, by the time you get

into a dr or specialist, often times, the flare is gone and since they can't see

anything.........this just gives them an idea of what is going on, how long the

flares are lasting, etc.

HTH

Hugs

July 7, 2006

Thank you for the advice, . I live in Florida and walking in

the heat creates some interesting swelling. I was starting to wonder

if it is all in my head.

Jodi

>

> Jodi

> I definately flare! I can always tell when the barometric

pressure changes as I really hurt then. When we had the hurricanes

a few years ago, I was MISERABLE! lol Just remember to take one

day at a time.

> One of the reasons to keep a diary is that when you flare, by the

time you get into a dr or specialist, often times, the flare is gone

and since they can't see anything.........this just gives them an

idea of what is going on, how long the flares are lasting, etc.

> HTH

> Hugs

>

July 8, 2006

Jodi, I too (like Jill) was diagnosed with sero-negative RA. I thought it was a

crock, until I started to feel better on the meds. Now the symptoms are more

identifiable, (not just felling poorly all the way around) I can actually

identify when a particular joint is bothering me. It took them about 6+ months

to come up with the diagnosis. I started with the antibiotic therapy thinking

it was the safest. I started to feel just a smidge better, then I got greedy, I

wanted to feel considerably better, so we moved on to Plaquinel then Arava, now

both. The side effects are scary, but if you can get some relief it is worth

it. They really are minimal in the grand scheme of things.

Hang in there, stay with the rheumy, he does know what he is doing, and your

test results will tell him more than an exam. the pain of RA is so subjective

and changes from day to day that exams don't really tell them much. My sed rate

went from 45 down to 22 with the plaquinel, now we are just trying to get the

C-Reactive protein down. That is double the norm too.

We are all here for you to share your frustration, it really helps to read the

posts on this board. You realize that you are not alone and that there is a

light at the end of the tunnel. Now if we could all just get the people around

us to wake up, this would be so much easier.

Lynn

lnburrell@...

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