Scared

[Guest guest]

I'm trying to remember back 20-odd years...and boy have they been some " odd

years! " seriously, though. My primary doc did some bloodwork, I'm assuming

checking for RA factor, which was positive, and referred me to a rheumy. They

did MORE bloodwork, which was a CBC, sed rate, and some other random stuff. I

also had hand exrays that day. btw, i have familial history of RA back at least

3 generations on both sides of the fam. at any rate, they came up with RA

plus " overlapping diagnoses. " that turned out to be raynauds, and some lupus

overlap, due to some other symptoms I was having. I was dx'ed with fibro back in

the dark ages when most docs thought it was just women needing to be on valium

or something. But bless Dr. Fortner's heart, he knew something was going on when

tough old broads like me started getting it!

I am a single mom and had no support system at the time I got sick, my kids

weren't old enough to really understand all the ramifications. As my real

friends became aware and chose to educate themselves, my true buddies and my

kids turned out to be unfailingly supportive and just a total rock for me to

lean on when I needed it. the friends who didn't understand I considered

expendable, but I'm that " cut to the chase " type.

Sweetie, try not to worry too much, I know it's scary. Not cramming anything

down your throat cuz i don't roll that way, but if I didn't have Jesus to carry

me, I'd pretty much be screwed. Sending good thoughts and hopes for pain free

days your way. You can do this.

Careful hugs from

Jane in dallas

>

> I think I might have RA, I go to the Dr. on Tuesday. I have not wanted to

worry any friends or family (except husband)until I know for sure. I wake up

every morning with my fingers aching and the are stiff through the day. I

noticed small pea sized bumps above my knuckels, which i am guessing are ra

nodules, I have lost about 15 pounds over the last year for no apparent reason.

I might not eat as much, but I am def. not dieting. I have always had trouble

losing weight. My mother has scleroderma, another autoimmune disease. I was

wondering if anyone could tell me what types of test they will run or just any

advice you think would be helpful. Thanks

>

[Guest guest]

Hi,I get my med file so I will try to write smth about tests but first of all,

rheum's decision will be difficult because differential diagnosis of these all

inflamatory arthritis and otoimmune disease is not easy. all test results tell

" there can be overlap with A and B, you might also have C 25% vice versa. I

searched every test and some of them are very useful but not %80 and over.they

all begin with CRP (acute phase reactant, which can be elevated in many

situation

which flared up in your body), RF of course. If your RF is negative, they can

not say you do not have  RA, some of people can be seronegative or in future you

will get RF positive. AntiCCP can be positive much earlier than RF in RA. 

Anti DNA, AntiRNP, Anti SSA, Anti SSB, Scl70, J01 and AntiSm (tests for lupus,

scleroderma and other rheumatoid diaseas can be checked. (I am writing my tests

) )All my tests were negative except  ANA, it insisted to be positive for four

times in five months, the only thing that make my family and doctors be aware

something going on because all my pain and fatigue is for me, there is no

redness, swelling /no objective findings. It is hard to decide for docs to tell

which disease you have, but I believe this will be much easier in future because

ACR (american college of rheumatology) gave them a new algorithm in Oct 2010 (if

I remember correctly), they are now

more free. no need to have certain number of diseased articulation , US /MRI

findings etc. the drugs they gave us are not innocent, it brings them great

responsibility,  so they want to give minimum to put us in remission. when the

test results are not strongly enough, (I mean objectively, pain and fatigue can

be all evaluated like " neurosis " ) , they must decide with their own experience.

so the doc you chose is very important. I am on university hospital now, it is

soooooo crowded, we can not talk for 5 min, but I believe in them. they

unerstand your situation just seeing how you come in the room, how you look at

their face.     It will be long journey if you have some rheum thing. but there

are so great people sharing their experiences with their disease so I am so

hopefull now.

With your bumps on your knuckles, it seems to be easier than me. they may want

to see you hand MRI or US, and maybe your hands x-ray bilaterally as a backup.

good luck. the tests above are all studied in blood, some results can be last

for a month.

google RA and diet. good luck again.

gg 

I was wondering if anyone could tell me what types of test they will run or just

any advice you think would be helpful. Thanks

>

[Guest guest]

I went thru all that too but i put 10 percent permethrin in my coconut oil

about once a week and rub down all over i use just coconut oil everynite it

smothers anything

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- scared

As I read these posts I am more scared than ever. I know everyone is here to

help though. I am just at a loss as to how to proceed. I am doing much better

and rarely have any symptoms anymore since the cold weather began.  I still

have an occasional itch, crawl or pin prick but for the most part everything is

getting better. My dog still shakes his head though. I have not done any

spraying or extra cleaning of the house other than my regular cleaning. I have

an appt. to a LLMD in the next couple weeks. Is that going to be enough? In the

beginning, I was not the only one to have symptoms. My kids both had bites and

rashes/allergic reactions a week after I did. The only difference is that I had

the crawling every night for 3 straight months. I could feel " things " getting in

my eyes, nose, ears, and " other places. " I am terrified of that returning. My

husband has never had any problems so therefore doesn't really understand.   

[Guest guest]

I no longer put anything on my skin and don't do the cleaning. I know it may seem impossible but if I'm better anyone can be. I'm still treating Lyme, bartonella, and babesia but I am recovering.AandrayaOn Nov 18, 2011, at 9:07 AM, Marilyn Bentley <colly_miller@...> wrote:

I went thru all that too but i put 10 percent permethrin in my coconut oil about once a week and rub down all over i use just coconut oil everynite it smothers anything

----------

Sent from AT & T Wireless using

- scared

As I read these posts I am more scared than ever. I know everyone is here to help though. I am just at a loss as to how to proceed. I am doing much better and rarely have any symptoms anymore since the cold weather began. I still have an occasional itch, crawl or pin prick but for the most part everything is getting better. My dog still shakes his head though. I have not done any spraying or extra cleaning of the house other than my regular cleaning. I have an appt. to a LLMD in the next couple weeks. Is that going to be enough? In the beginning, I was not the only one to have symptoms. My kids both had bites and rashes/allergic reactions a week after I did. The only difference is that I had the crawling every night for 3 straight months. I could feel "things" getting in my eyes, nose, ears, and "other places." I am terrified of that returning. My husband has never had any problems so therefore doesn't really understand.

[Guest guest]

Did you have them going in your eyes, nose, etc? Do you think you had bird mites?

From: Aandraya <aandraya@...>"bird mites " <bird mites > Sent: Friday, November 18, 2011 12:22 PMSubject: Re: scared

When you treat the internal infections things do resolve because the bugs will no longer be attracted to you. I know it is scary, I have not had them for over a year but I still get nervous when I am reminded of all I went through. But I am doing really well, one dY at a time.

Aandraya

On Nov 18, 2011, at 8:48 AM, Linds J <lj_mom11@...> wrote:

As I read these posts I am more scared than ever. I know everyone is here to help though. I am just at a loss as to how to proceed. I am doing much better and rarely have any symptoms anymore since the cold weather began. I still have an occasional itch, crawl or pin prick but for the most part everything is getting better. My dog still shakes his head though. I have not done any spraying or extra cleaning of the house other than my regular cleaning. I have an appt. to a LLMD in the next couple weeks. Is that going to be enough? In the beginning, I was not the only one to have symptoms. My kids both had bites and rashes/allergic reactions a week after I did. The only difference is that I had the crawling every night for 3 straight months. I could feel "things" getting in my eyes, nose, ears, and "other places." I am terrified of that returning. My husband has never had any problems so therefore doesn't really understand.