Re:Negative! Negative! Negative!

[Guest guest]

I also am negative everything.  Due to great difficulty walking I saw a

podiatrist (who wanted to do inappropriate surgeries that would have crippled

me) then 2 othopedic surgeons.  The second was a woman, and they just listen

better than men.  She pulled out my MRI from over a year earlier, looked at my

x-rays where the bones had migrated in the feet, and had me in to see a rheumy

within 30 minutes.  The rheumy dx RA, but quit the practice, the 2nd rheumy kept

saying I didn't have it.  Then he sent my DNA testing for HBLA27 (hope I have

those numbers correct). 

 

so, genetic testing can help get you the Dx you need to get the right

treatment.  Currently I'm on mtx injections, sulfasalizne, prednisone,

plaquenil.  Sometimes I'm back in bed by 9:30am.  I'm trying very hard to hang

onto my job.  The overwhelming exhaustion is worse than the pain.  The problems

secondary to RA donj't help (osteoporosis, anemia, exhaustion, flu like

feelings, not sleeping, etc.)

 

also, while I'm at it, here's my response to " we look the same "   I wish I did! 

I look awful, puffy prednisone face, weight gain, huge dark bags under the eyes

(can hardly sleep), red eyes, puffy lids that almost close the eyes, walking

stiifly and gimpy, funky fingers, people look at me and say oh what happened!  I

aged about 20 years in the last 3 years, but part of that is because it took me

almost 3 years to get the proper diagnosis (dx)

 

this list is very helpful, because I learn from what other people suffe...I can

see where my weight gain could equal some people have shared about in just a few

years, and the extra weight stresses the joints), the people on walkers help me

treasure my ability to get around and be glad to pace myself (can't shop & cook

on the same day,etc.)  So much practical  advice... I really appreciate each one

of you

[Guest guest]

,

Plaquenil can cause severe fatigue and weakness. I'm recovering from

being hospitalized because of it. It is not a common side effect but

it does happen. It is the quinine In the Plaquenil

(Hydroxychloroquine) that can cause drug induced Myasthenia Gravice

(check it out).

Peace and gentle hugs,Stella

>

> I also am negative everything.  Due to great difficulty walking I

saw a podiatrist (who wanted to do inappropriate surgeries that would

have crippled me) then 2 othopedic surgeons.  The second was a woman,

and they just listen better than men.  She pulled out my MRI from

over a year earlier, looked at my x-rays where the bones had migrated

in the feet, and had me in to see a rheumy within 30 minutes.  The

rheumy dx RA, but quit the practice, the 2nd rheumy kept saying I

didn't have it.  Then he sent my DNA testing for HBLA27 (hope I have

those numbers correct). 

>  

> so, genetic testing can help get you the Dx you need to get the

right treatment.  Currently I'm on mtx injections, sulfasalizne,

prednisone, plaquenil.  Sometimes I'm back in bed by 9:30am.  I'm

trying very hard to hang onto my job.  The overwhelming exhaustion is

worse than the pain.  The problems secondary to RA donj't help

(osteoporosis, anemia, exhaustion, flu like feelings, not sleeping,

etc.)

>  

> also, while I'm at it, here's my response to " we look the same "   I

wish I did!  I look awful, puffy prednisone face, weight gain, huge

dark bags under the eyes (can hardly sleep), red eyes, puffy lids

that almost close the eyes, walking stiifly and gimpy, funky fingers,

people look at me and say oh what happened!  I aged about 20 years in

the last 3 years, but part of that is because it took me almost 3

years to get the proper diagnosis (dx)

>  

> this list is very helpful, because I learn from what other people

suffe...I can see where my weight gain could equal some people have

shared about in just a few years, and the extra weight stresses the

joints), the people on walkers help me treasure my ability to get

around and be glad to pace myself (can't shop & cook on the same

day,etc.)  So much practical  advice... I really appreciate each one

of you

>

>

>

>

>

[Guest guest]

Thank you all so much for your input! No, I am not seeing a

Rheumatologist because my family doctor wants to explore other possible

reasons for my ails like kidney problems and heart problems. These

things seem much less likely considering my symptoms which are textbook

RA symptoms and my strong family history of RA. But she said since my

ANA and sed rate are negative (and I had pitting edema when I got my

blood drawn) there was no way it could be RA! So she doesn't want to

send me to a Rheumatologist. Will the Rheumy diagnose RA on other

factors?