Re: Test results back

[Guest guest]

of coarse you can stay here. it takes a long time to diagnose. my ra test was

negative too. i was having alot of the same symptoms. at times i could not

even butter a piece of bread. you need to be persistant. if this dr does not

keep trying, find one who will. i hope you have help with both you and your

son sick. i know that one too!! i will keep you in my thoughts. kathy in il

[Guest guest]

Thank you Kathy...I appreciate your thoughtfulness.

Hugs, Mindy

[Guest guest]

Susie,

Thank you for the information...I am going to do that right away. I hope you

are feeling better, I am very so you have been so sick.

Hugs, Mindy

[Guest guest]

thanks for those links, i'll have to check them out. i called my rheumi again

today and they will put me on the cancellation list. i called in for water

therapy too. i am too dizzy to try and drive. kathy in il

[Guest guest]

Thanks ,

No, my Dr. told the nurse I didn't need to make another appointment. Guess

what,I did anyhow, and if I am dismissed tomorrow I will tell her to either

find someone who can help me or I will. I refuse to live like this...I

can't.and not knowing as you already know is maddening. I just want to cry

but that would ruin the makeup I put on...and God knows I don't want to have

to reapply it.

I don't know...I just don't know.

Hugs,

Mindy

[Guest guest]

Kathy,

Why are you dizzy? Is that part of RA? I was just wondering...since I don't

know very much about this. I sure hope you feel better and I am sorry you had

to miss your appointments.

Hugs,

Mindy

[Guest guest]

mindy you need to find a dr that will help you. it can be very discouraging.

but you know it is not in your head. sometimes my rheumi has to tell me that.

it took a long time. just tell them all. sometimes it helps to write down the

symptoms, what you ate etc. that will help them rule out somethings. good

luck, kathy in il

[Guest guest]

Mindy I have been real sick since Christmas, so have only been scanning

the posts. I haven't kept up much. But yours caught my eye today.

If you are having Arthritis Symptoms, and are RA Neg. Then go to a

SEARCH pattern and type in " seronegative spondyloarthropathies " ...

you will get a world of info.

Susie

mindy77_2000 wrote:

> Hi everyone,

> My test results were negative for RA and a thyroid disorder.

> This is good, but the problems are getting worse. The tips of my

> fingers are increasing in being very cold...the muscles of my arms

> and legs, especially my arms feel like they are on fire. I feel

> numbness and tingleing in my arms and hands...alotI still have the

> joint pain...I went to the store 2 days ago and the side of my foot

> up to my big toe was excruitiating...that night I found a lump...very

> painful with red streak on it...no bruising...the red is gone but it

> is still tender to touch my legs and arms just feel very weak. I

> don't know were to go from here. I keep telling myself it is all in

> my head..but then my fingers start swelling and are stiff and painful

> and my toes hurt..etc...and I know it isn't.I have a lump I am

> swollen on my wrist bone...

> The worst still is my son has pnuemonia.: ( He is pretty sick...it is

> in his left lung but since he has a breathing machine at home they

> didn't put him in the hospital...his temps have been 103 steady since

> Monday.Poor guy.

> I feel dicouraged and I have no clue what is wrong with me...I guess

> I will just keep saying it is all in my head and get on with it.

> What does it mean if when I take a hot shower my arms and legs feel

> even worse...weak...like I can't even wash my hair?

> I hope everyone is having the best day they can.. : )

> Hugs, Mindy

> P.S...Can I stay here even though I am Ra negative? I would miss all

> of you and the eternal optimism you all have...: (

>

>

>

[Guest guest]

Mindy,

Of course you can stay! We don't care what your test results are. How

you are feeling is what matters. And please don't believe that your

problem is in your head just because you don't have lab values to

explain what is going on with your body. Second-guessing yourself or

wondering if you could be imagining things is a natural reaction, but it

would be a big mistake to let those feelings linger since laboratory

validation is not always possible, especially in the beginning stages of

many illnesses, especially rheumatic diseases.

Trust your instincts. You know your body. If you believe something is

wrong, there most likely is. If your doctor dismisses your symptoms as

being " all in your head, " leave that doctor and find another who is more

compassionate, more curious, and has better problem-solving skills.

I know that when labs come back without yielding clues, it's extremely

frustrating. That's one reason why I was trying to caution you before

your appointment. The diagnostic tests that are currently available for

rheumatic diseases, including RA, are LAME. Doctors know this, and many

are frustrated by the lack of good diagnostic tools, too - it makes

their job very difficult sometimes. Most rheumatic disease diagnoses are

arrived at chiefly through careful clinical observation and

interpretation of the patient's history, not lab test results. Blood

tests and x-rays and other tests can provide important hints or solidify

a diagnosis, but they rarely make the diagnosis. The estimates are that,

in the case of rheumatoid arthritis, between 25 - 30% of patients don't

ever test positive for rheumatoid factor (RF). There is no one test or

combination of tests that can either rule in or rule out RA.

Frustrating, but true.

Remember, too, that lab values can change over time. You are still in

the early stages of your problem, whatever it is.

It might be a good idea to go see a rheumatologist and, possibly, a

neurologist for another opinion.

I've found it helpful to keep a diary of symptoms and developments.

There is no need to write every day or even every month. But when

something new happens, make a note of it. This may help you or your

physician spot an important trend or association.

Most importantly, don't lose hope. You're in good company here. We do

understand. Not feeling good and not having a diagnosis to explain it is

a maddening situation to find yourself in. Hang in there, and, with any

luck, you'll get a diagnosis sooner rather than later. In the meanwhile,

did your physician have any ideas about how to treat your symptoms and

help make you comfortable?

Sorry also to hear about your son's pneumonia. Hope he can recover very

soon.

[ ] Test results back

> Hi everyone,

> My test results were negative for RA and a thyroid disorder.

> This is good, but the problems are getting worse. The tips of my

> fingers are increasing in being very cold...the muscles of my arms

> and legs, especially my arms feel like they are on fire. I feel

> numbness and tingleing in my arms and hands...alotI still have the

> joint pain...I went to the store 2 days ago and the side of my foot

> up to my big toe was excruitiating...that night I found a lump...very

> painful with red streak on it...no bruising...the red is gone but it

> is still tender to touch my legs and arms just feel very weak. I

> don't know were to go from here. I keep telling myself it is all in

> my head..but then my fingers start swelling and are stiff and painful

> and my toes hurt..etc...and I know it isn't.I have a lump I am

> swollen on my wrist bone...

> The worst still is my son has pnuemonia.: ( He is pretty sick...it is

> in his left lung but since he has a breathing machine at home they

> didn't put him in the hospital...his temps have been 103 steady since

> Monday.Poor guy.

> I feel dicouraged and I have no clue what is wrong with me...I guess

> I will just keep saying it is all in my head and get on with it.

> What does it mean if when I take a hot shower my arms and legs feel

> even worse...weak...like I can't even wash my hair?

> I hope everyone is having the best day they can.. : )

> Hugs, Mindy

> P.S...Can I stay here even though I am Ra negative? I would miss all

> of you and the eternal optimism you all have...: (

[Guest guest]

Suzanne,

I don't have a lot of faith in Dr's anyhow...I think they tell you what they

think...not what is seen in reports or labs or x-rays sometimes...meaning if

they think you are fine then to hell with the report. My son was a very sick

kid...I had been to every Dr. imaginable fighting for him until one sinus Dr.

said it sounds like an immune problem...he was 7 or 6 I think at the time so

we went to an immunologist at the childrens hospital, whom thought my child

looked great...yea..I pushed the vitimins...hovered...prayed...cried and was

at the Dr's 1 or 2 times a week for the previous 4 years...not kidding...to

try to get him help...any how he decided to go ahead and run the test to

check his immune system...He called me up and told me everything was

fine....ok...good...so on to the next Dr....an allergist...another one since

he had seen several...all Dr;s seem to stop taking our insurance it is HMO

and any ways...(remember how I can drag out a story...lol) this was about 6

months later

the allergist ran all the test....he has very sensitive skin...there is a

technical name for it but he said " writing on the skin " like one touch he

turns red...you could write out a message on him...he couldn't tell since his

skin was so sensitive. He thought he had an immune problem...I said NO he

already was tested for it...that DR said I want those test in my

hands..now...YOU know what...that special Dr. from the childrens hospital

flat out lied....flat out...that (excuse me) basterd! The allergist retested

to make sure they were right...they were, no we had to find out if it was a

" cell " memory problem, which could be fixed by vaccines or if he was going to

be basically the boy in the bubble...thank God it was a cell memory problem.

I went back to the chilrdrens hospital, with my son, I went hunting that Dr.

down...found him in some office(mind you with out an appt.) and ask him why

he lied to me. He said I thought the test were wrong...your son looks to

healthy and if the test were right he is a very sick little boy...DUH...that

is what I had been trying to say. I told him they had been run again and they

were right...he just stood there staring at my son...I didn't take any steps

to get that DR. in trouble but I sure hope he listens and pays attention to

the next person he thinks that way about. That hospital also lied to me when

my son was 3 and he had ITP..bleeding..everywhere. He had a brain hemmorage

in his brain stem and they told me he didn't...how did I find out...when he

was admitted the next year, they said it says here he had a brain stem

hemmorage...my husband and I just looked at each other....MY point is I do

not trust them. When it comes to my son, I ask to see the results now...I

only wish I could do it for myself.

Sorry it was so long but that ticks me off to this day and my son is almost

12.

Thanks for listening to that story...I think there is a moral in there some

where...lol

Hugs, Mindy

[Guest guest]

Hi Mindy,

Remember me, newly diagnosed with RA (since Jan)? All my initial test

results were negative. Negative for RF, hand x-rays interpreted as normal

even though there was obvious swelling. I suffered a lot of pain NEEDLESSLY

for a year and a half because I wasn't more insistent! I too thought it

must be in my head (how stupid, in retrospect), that I must be exaggerating

without realizing it; it is very hard for me to assess my pain, either on a

level of 0-10, or against someone else's pain. I can tell you I was in alot

of pain, and somehow managed. The whole experience was stupid and needless.

Ask for a referral from you doctor to a rheumatologist. If she won't make

one, do it on your own. Try to find out who the good ones are in your area.

Rheumatologists look at things very differently from gps and internists.

They are specialists! All the advice of writing down how you feel, what

bothers you, what your symptoms are, is great advice. If you are like me,

I'm struck dumb the minute I walk into a doctor's office. A good

rheumatologist will manipulate every joint in your body during an initial

exam. My internist never did this the first time. They have different

training. What makes no sense to an internist often makes perfect sense to a

specialist.

Don't give up!! Something is wrong, you need to find out what it is.

Interpretation of xrays and bone scans are also very subjective. A good

physician will ask to see the original films and make his/her own decisions

based on what they see. My first set of w-rays were so poor, you could not

see any definition of the bones where they meet at the joints. This lousy

x-ray was interepreted as " normal " . My internist read the report and passed

along that there was nothing wrong with my hand. HELLO! According to the

report of my bone scan, I had some inflammation in my hands and feet. When

the rheumatologist and I looked at the scan, there was also inflammation in

my knees, ankles, wrists and shoulders! Did they just not notice, get

distracted and forget to mention it, or did they decide it just wasn't

important?

Gotta run,

Keep looking for answers Mindy!

Suzanne

[ ] Test results back

> Hi everyone,

> My test results were negative for RA and a thyroid disorder.

> This is good, but the problems are getting worse. The tips of my

> fingers are increasing in being very cold...the muscles of my arms

> and legs, especially my arms feel like they are on fire. I feel

> numbness and tingleing in my arms and hands...alotI still have the

> joint pain...I went to the store 2 days ago and the side of my foot

> up to my big toe was excruitiating...that night I found a lump...very

> painful with red streak on it...no bruising...the red is gone but it

> is still tender to touch my legs and arms just feel very weak. I

> don't know were to go from here. I keep telling myself it is all in

> my head..but then my fingers start swelling and are stiff and painful

> and my toes hurt..etc...and I know it isn't.I have a lump I am

> swollen on my wrist bone...

> The worst still is my son has pnuemonia.: ( He is pretty sick...it is

> in his left lung but since he has a breathing machine at home they

> didn't put him in the hospital...his temps have been 103 steady since

> Monday.Poor guy.

> I feel dicouraged and I have no clue what is wrong with me...I guess

> I will just keep saying it is all in my head and get on with it.

> What does it mean if when I take a hot shower my arms and legs feel

> even worse...weak...like I can't even wash my hair?

> I hope everyone is having the best day they can.. : )

> Hugs, Mindy

> P.S...Can I stay here even though I am Ra negative? I would miss all

> of you and the eternal optimism you all have...: (

>

>

>

>

[Guest guest]

i am feeling a little better, i cleaned today. so now i will probably be sore

for the rest of the day. tomorrow i will put this all together in my head

before my appt monday morning. thanks for asking!!! kathy in il

[Guest guest]

Kathy,

Glad to hear you are a little better. You know my son has had pneumonia, he

finally got out of bed and I cleaned his entire room this morning..while,

get this...singing and dancing..!!!!

Hugs, Mindy

[Guest guest]

i'm glad you feel better today mindy, but don't overdo it like i did!!! kathy

in il

[Guest guest]

Kathy,

I am checking in on you and want to know how you are?

I hope things are at least a little better..

Let me know, please

Hugs,

Mindy

> of coarse you can stay here. it takes a long time to diagnose. my

ra test was

> negative too. i was having alot of the same symptoms. at times i

could not

> even butter a piece of bread. you need to be persistant. if this dr

does not

> keep trying, find one who will. i hope you have help with both you

and your

> son sick. i know that one too!! i will keep you in my thoughts.

kathy in il

[Guest guest]

Kathy,

I see what your saying....I just finished soaking in a bubble bath..my legs

are screaming!!!!! I guess I need to pay attention to what " those that have

gone before me " are saying, LOL

Are you feeling ok...you still sound or seem down..: (

Hugs, Mindy

[Guest guest]

i guess i am just tired of doing it all alone. my son is gone about 13 hours

a day. kathy in il

[Guest guest]

Kathy,

I assume you aren't married? How old is your son? I wish there were something

I could say or do..How long have you had this? You know, I don't know what

you think of anti-depressants but if I were you..and if I have to deal with

this for any amount of time...I will definatley seek them if I can't make

it. I was telling my husband that I hope and pray this is a virus, but having

had what is probably a small taste in comparison of what may be to come and

what people are suffering now it just seems to be an unimaginable frustrating

disease, and to think you have to do this for the rest of your life...who

wouldn't be down, right...right. It seems that perhaps you have been dealt

more than a single blow in your life and this is just the icing on the

cake...am I wrong? Here I am sounding like Miss Cleo..lol.... really if you

need or want to talk you can e-mail me at BYORKFAMILY @aol.com.

[Guest guest]

hey mindy, i am a widow. my son is 18. we have been alone 9 years now. i have

been sick about 5 years now. i'm sure my illness was brought on by stress,

plus my grandpa was crippled. i am on buspar, prednisone, nexium, tylenol 3's

when needed. they just gave me xanaflex but haven't tried it. kathy in il

[Guest guest]

> Hi, my childrens dr. called today and told my husband that their

> mercury test came back normal...said " there was an undectable amount " .

> So this means to me that they were not affected by mercury, am i

> right? any comments? I'm not sure how long after exposure it would

> show up in hair. Thanks in advance!

>

>

Dear ,

THANK YOU FOR ASKING, and NO IT DOES NOT MEAN THAT YOUR KIDS

ARE NOT AFFECTED BY MERCURY POISONING. It means we don't know

yet one way or the other.

Please read the " introduction " section here:

/files/Counting%2BRules

If that seems unclear, then you can also read here:

/files/ANDY_INDEX

Look for the section called (something like) " determining mercury

toxicity-- hair tests " .

Please post again with any questions about this.

best wishes,

Moria

[Guest guest]

Thanks Moria, still a little confused as all of this

is new to me. I read all of the links and am i right

in understanding maybe try chelation then repeat

testing? I will have to find a dr. in my area that has

knowledge of this, mine doesn't know didly. Thanks for

your help!

--- moriamerri <moriam@...> wrote:

>

> > Hi, my childrens dr. called today and told my

> husband that their

> > mercury test came back normal...said " there was an

> undectable amount " .

> > So this means to me that they were not affected by

> mercury, am i

> > right? any comments? I'm not sure how long after

> exposure it would

> > show up in hair. Thanks in advance!

> >

> >

>

> Dear ,

>

> THANK YOU FOR ASKING, and NO IT DOES NOT MEAN THAT

> YOUR KIDS

> ARE NOT AFFECTED BY MERCURY POISONING. It means we

> don't know

> yet one way or the other.

>

> Please read the " introduction " section here:

>

/files/Counting%2BRules

>

> If that seems unclear, then you can also read here:

>

/files/ANDY_INDEX

>

> Look for the section called (something like)

> " determining mercury

> toxicity-- hair tests " .

>

> Please post again with any questions about this.

>

> best wishes,

> Moria

>

>

>

>

__________________________________________________

[Guest guest]

>Thanks Moria, still a little confused as all of this

>is new to me. I read all of the links and am i right

>in understanding maybe try chelation then repeat

>testing? I will have to find a dr. in my area that has

>knowledge of this, mine doesn't know didly. Thanks for

>your help!

>

>

Hi ,

Well, I know it is VERY confusing for a while--- but hang

in with this--- after about 100 repetitions it gets to seem

pretty boring Actually if you are only A LITTLE confused

that is pretty good. I do not mean to sound " harsh " but

I would really suggest that you should expect to be confused and

boggled -- and, if possible, decide to be willing to have

that happen. The learning curve on mercury/metals can be

unpleasant.

My main points (gee, do I remember?) were:

* low hair mercury level proves nothing

* hair levels of elements can be used (counting rules)

You might find that reading ANDY_INDEX would help a lot.

You can just go in there and " wander around " and read the

topics that are interesting to you on a particular day.

/files/ANDY_INDEX

Since you posted about mercury level in a hair test, I would

suggest that you start by reading some of the matrerial in

ANDY_INDEX that is in the sections on " determining mercury

toxicity " .

I believe most doctors " know didly " on this subject. Some

also know just enough to be dangerous. Some know enough to

be helpful.

Keep reading and keep posting questions. Both.

best wishes,

Moria