Re: No Diagnosis

[Guest guest]

You need more than TSH. You need FREE T3, FREE T4. What was your TSH? A

" normal " TSH with your temperatures could be indicative of a pituitary

problem.

My 22 yo DD was just diagnosed with PCOS. Let us know how you do.

Val in Boulder, CO

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

From: Maybe ? [mailto:siriuslyv@...]

My TSH levels were normal and I am now having an ultrasound to check

for Polycystic Ovarian Syndrome...

I can't help but wonder why my regular temperature is 97.1

[Guest guest]

HI Kirsten,

Lyme Arthritis is now a primary diagnosis with the Arthritis Foundaiton.

There have been studies how antibiotics help arthritis.........but

rheumatologists don't listen. Arm yourself with as much information as you

can. Lyme is a Clinical Diagnosis. Request a copy of your Western Blot.

Even one bad is positive for lyme. The CDC criteria is only for

surviellance. You need to find a LLMD...

a lyme literate doctor.

good luck,

connie, michigan

[ ] no diagnosis

> Hi,

> I've been fighting arthritis like symptoms (severe joint pain, swelling

> and

> damage in feet and hands) and all over muscle pain for over two years.

> Initially, a diagnosis of rheumatoid arthritis and fibro was given and I

> spent a

> year on methotrexate, prednisone, enbrel and then humira-- no improvement.

> Requested minocin and started that.

>

> Five years ago I had a severe case of Lyme (blood test diagnosed, western

> blot) and had 21 days of tetracycline.

>

> Just went to a new doc who suspected chronic, late Lyme. The blood test

> (western blot) is negative, just got the results.

>

> I'm freaked; frankly, I want a diagnosis so I can pursue getting better. I

> did start ceftin and plaquinel and am continuing minocin after the blood

> was

> drawn.

>

> I am seeing the doc next week and want to be prepared with intelligent

> questions. I have read much about the meds I have taken affecting an

> accurate Lyme

> test. Sounds like its possible I won't get an accurate test because of the

> drugs I have been taking for a year.

>

> I know many of you have been through this. What shall I ask the doctor,

> and

> are there other roads to pursue?

>

> Kirsten, MN

>

>

>

[Guest guest]

That answer from your doctor is not acceptable, in my opinion. What are her

plans for you, to wait until the symptoms are more pronounced? I doubt if

it takes a worsening of 'whatever' to determine what you've got. I was

watching Larry King Live where the actress, Teri Garr, was being interviewed

about her diagnosis (a few years ago now) of multiple sclerosis. She must

have had it for several years before the light finally went on in the right

doctor's brain. My daughter was diagnosed with M.S. back in early '91 with

a simple spinal tap followed by an MRI. Apparently, Teri Garr didn't see

the right doctor who would have put her through the necessary battery of

tests.

I say - pressure your doctor about this. If she doesn't know what to do,

find another doctor! Good luck.

What are your symptoms, by the way?

Ellen

rheumatic No Diagnosis

> After seeing my doc again, I still have no diagnosis. She says this

> is a good thing. It means I may have a 'milder' form of 'whatever' I

> have. I'm a little frustrated b/c I feel like I'm in the dark about

> what's happening to me and I can't stop it. Did it take years for any

> of you to be diagnosed? It's been only 11 months since 'it' started.

> Any input?

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

Hi, dsaamcbee:

Ankylosing Spondylitis sometimes takes DECADES to diagnose, especially in

WOMEN because many doctors still have the wrong impression that women don't

get this disease.

I have AS and also had initial false positive hepB test, later confirmed

negative; I'm in ultra-low risk group for this, also.

The main differences between AS and RA: AS is asymmetrical and affects the

1) pelvis with sciatica (men mostly-- " lumbago, " also), spine, hips, knees,

feet, eyes (iritis), ribcage (costochondritis).

Suggest that you are tested for the antigen (HLA B27) and have both CRP and

ESR tests run.

DIET is very important: Getting enough EFA from fish oils and totally

ELIMINATING STARCHES, especially all produces containing refined (flour) and

soluble (potatoes); even supplements that use starchy fillers. Check out

the Mercola regimen or visit the NSD forum at www.kickas.org --JUST the NSD

forum except to look at the TRAINWRECK that other people are involved in who

ignore the diet!! Our lifesytle choices, especially FOOD choices, can

greatly increase our bacterial production and with this comes fungi,

protista, viruses, and every other unwanted visitors that can cause myriad

problems.

You may not have AS, but this and many other types of arthritis have their

start in DIET and LGS (leaky gut syndrome). The Zampieron, et al book

(Arthritis: An Alternative Medicine Definitive Guide) is excellent. If you

have AS THEE single MUST READ is available via amazon-UK--Carol Sinclair's

" The New IBS Low-Starch Diet. " Understand that some of the drugs used to

" treat " AS and RA only treat symptoms and can make the disease much worse

due to increased LGS--these drugs are the NSAIDs. AVOID AVOID AVOID!

For ANY CHRONIC condition, a RADICAL CHANGE in SOMETHING should be

done--start with DIET; it can be done today and the best cleansing regimen

is the Edgar Cayce Three Day Apple Diet.

Good luck and I hope that you DON'T have AS, but some much easier to treat

condition (albeit that does not let us off the hook in the diet department),

rheumatic No Diagnosis

After seeing my doc again, I still have no diagnosis. She says this

is a good thing. It means I may have a 'milder' form of 'whatever' I

have. I'm a little frustrated b/c I feel like I'm in the dark about

what's happening to me and I can't stop it. Did it take years for any

of you to be diagnosed? It's been only 11 months since 'it' started.

Any input?

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

It's taken me six years, and I still don't have a definitive diagnosis. I

will be seeing a new rheumatologist on December 1. I am convinced that I

have polymyalgia rheumatica (PMR), a disease associated with joint and

muscle pain which mimics many of the symptoms of RA and fibromyalgia but is

different from them.

One of the factors which makes naming a rheumatic disease difficult is that

many have overlapping symptoms, such as joint pain, tendon pain, muscle

pain, morning stiffness and tiredness. A problem that I ran into with my

recent rheumatologist is that he did not listen. During any consultation, I

was only able to bring up the most urgent matters, then time was up. He

jumped to the wrong conclusions. One of the problems is that a doctor can

easily make a wrong diagnosis and then embark on a treatment program that

is not effective.

You definitely need to see a different doctor. If your disease is still a

" milder form, " now is the time to treat it. I suggest that you write up a

detailed report of your disease history for your next doctor. You may want

to share it with this group.

Sincerely, Harald

At 02:09 PM 11/19/2005 +0000, you wrote:

>After seeing my doc again, I still have no diagnosis. She says this is a

>good thing. It means I may have a 'milder' form of 'whatever' I

>have. I'm a little frustrated b/c I feel like I'm in the dark about

>what's happening to me and I can't stop it. Did it take years for any of

>you to be iagnosed? It's been only 11 months since 'it' started.

>Any input?

[Guest guest]

Hi,

I started feeling something was " wrong " shortly after I turned 30. I live in

the Chicago area and went to an array of Dr.'s who did put me through just

about every test imaginable...still nothing. One Dr. at Univ. of Chicago

even asked me if I was getting enough attention from my husband! It took 18

months for my ANA to show a positive result for Scleroderma and even then it

was barely positive. However I was listening to my body and knew it was not

a false positive.

Long story short is that I found Dr. Mercola and after doing IVs and Minocin

and drastically changing my diet/supplements am feeling great and have cut

the medicine down to a very low maintenance dose. (At it's highest my ANA

was 380)

My advice to you is to continue to listen to your body. It is my

understanding that very subtle symptoms can be present and bloodwork looks

normal. Dr. Mercola told me I was very lucky that I did catch this at such

an early stage. Perhaps this is true for you also. In the meantime you can

still adjust your diet etc. I found that for myself getting adequate sleep

was very important.

Good luck!

Kris

rheumatic No Diagnosis

> After seeing my doc again, I still have no diagnosis. She says this

> is a good thing. It means I may have a 'milder' form of 'whatever' I

> have. I'm a little frustrated b/c I feel like I'm in the dark about

> what's happening to me and I can't stop it. Did it take years for any

> of you to be diagnosed? It's been only 11 months since 'it' started.

> Any input?

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

Lazsas, I wish I could answer your questions.

In terms of your episode ten years ago: many things can cause temporary liver

number elevation. As you say, your current problem and the one ten years ago

might be unrelated. Most of us with AIH don't see our numbers return to normal

without the intervention of medication -- if then.

It sounds as if you're seeing a hepatologist who talks well with you. Is that

the case? You might want to get a second opinion, as you're in a puzzling

situation. My hep is at UCSF; she seems to relish puzzling situtions!

I hope you're able to get a clear diagnosis soon. Until then, I suggest you

avoid alcohol completely and that you inform your hep before you take any

medication at all, even simple things like OTC cold remedies. Also get clearance

before using any unusual herbal teas. You might want to ask at your next appt

what your hep suggests you use for minor pain relief, should you need it. For

example, my hep tells me to avoid aspirin and okays reasonable amounts of

Tylenol. This advice wouldn't fit everyone.

Have you had Hep A and B vaccines? If not, you might want to do so. My doctors

strongly recommended it; they advised it for my husband as well, to give me

further protection.

Be sure to keep current on all vaccines -- depending on your age and health,

that might include flu shots, pneumovax, tetanus, and shingles (herpes zoster)

in addition to Hep A & B. I mention shingles because those of us who take

immunosuppressants for AIH are particularly vulnerable to shingles, yet the

vaccine's use is questionable once we begin taking those immunosuppressants.

Not everyone with liver disease develops cirrhosis; I'm glad to hear that you

have not.

Many of us like Dr. Palmer's book, " Guide to Liver Disease " . It's a

mainstream publication directed toward people new to liver disease. If you can't

find it locally, Amazon has it for under $20.

Best wishes.

Harper

AIH dx 2000

CD dx 2002

female, 67, northern CA like you - SF and Sea Ranch

[ ] No diagnosis

Hello Everyone. I am new to this board. I wanted to learn more about AIH

and other liver diseases and hopefully receive feedback from others

based on their experiences.

At this point it is unclear what I have. Since mid Sep 2010 I had

significantly elevated liver function tests (LFTs) (ALT peaked at

1,800), with jaundice, tiredness, digestion problems. By most measures

it was a pretty severe acute hepatitis. By November the ALT had fallen

to 260 and I have been asymptomatic, but in December the LFTs went back

up again (ALT=750). I am still feeling normal. Hep A, B, C, E, or G

viruses were all negative, and a rather large list of autoimmune

antibody tests also came up negative. Liver biopsy showed fair damage to

liver, but no cirrhosis (yet), and was otherwise inconclusive in

identifying the cause. So were the ultrasound and CT scans earlier. My

liver specialist initially thought I may have an " uncommon form of AIH "

and wanted to put me on Imuran, but later ruled out AIH due to lack of

specific autoimmune indicators. He also ruled out other autoimmune

diseases like PBC, and ruled out tumors. At this point, he is unable to

diagnose. Interestingly, I had a more mild elevated ALT episode 10 years

ago also (ALT peaked at 400), which returned to normal after about four

months. At that time, all hep virus and a various antibody tests were

also negative. Since then my LFTs have been all w/in normal range.

So a few months ago my liver got nailed with something that caused

significant liver inflammation and short-term jaundice (but no liver

enlargement or pain at all). From what little I know, I think I may have

AIH simply because of what happened 10 years ago, although it is unclear

whether the two events are really related.

I would greatly appreciate any feedback or observations you may have on

what I wrote above. Does AIH manifests itself with periodic flare-ups

that get worse with each flare-up? And in-between flare-ups, do the LFTs

return to normal or do they chronically remain elevated?

Thank you.

Lazsas

(male, 47, in N. Cal.)

[Guest guest]

Hello Lazsas, welcome to this mailing list.

Diagnoses aren't always clear-cut. Last August I tested positive for AMA

antibodies (indicating PBC) and also positive for SMA (indicating AIH). To

rule out PBC/AIH overlap, my Kaiser gastroenterologist sent my liver biopsy

specimen to experts at UCSF, who determined I had PBC only. Your liver

specialist may need to forward your biopsy slides to some experts. UC

also has excellent liver disease specialists. I gather you live near

Sacramento.

in Napa California, age 69, PBC stage 4 dx 9/2010; also IBS,

hypertension, Sjogren’s

[Guest guest]

Hello Harper,

Thank you very much for your reply. Yes, my liver specialist is at the UCSF

liver clinic. He is very busy (he apparently does everything from consultations

to liver transplants) but he tries to answer all my questions, whether in person

or via email. So I am gald to be in his care and am happy that he is so

approachable.

So the LFTs don't necessarily return to normal, even with meds. I didn't realize

that. Does this mean immunosuppressants for life? Are there still flare-ups even

with meds? How often are the LFTs generally monitored (monthly, quartely, etc.)

and are there large and quick swings seen in LFTs, or things pretty much level

out once on immunosuppressants?

Thank you for your advice on vaccines. Yes, the combo Hep A+B vaccine is on

list; we're just waigtng until either the LFTs return to normal or we figure out

what is going on with my liver.

And yes, I have already obtained Dr. palmer's book (I saw it recommended in this

blog). The book was very informative and I learned a lot from it. However, as I

am still new to this health problem and continue to learn about it, I always

have a lot of new questions.

Thanks again.

Lazsas

>

>

> Lazsas, I wish I could answer your questions.

>

> In terms of your episode ten years ago: many things can cause temporary liver

number elevation. As you say, your current problem and the one ten years ago

might be unrelated. Most of us with AIH don't see our numbers return to normal

without the intervention of medication -- if then.

>

> It sounds as if you're seeing a hepatologist who talks well with you. Is that

the case? You might want to get a second opinion, as you're in a puzzling

situation. My hep is at UCSF; she seems to relish puzzling situtions!

>

> I hope you're able to get a clear diagnosis soon. Until then, I suggest you

avoid alcohol completely and that you inform your hep before you take any

medication at all, even simple things like OTC cold remedies. Also get clearance

before using any unusual herbal teas. You might want to ask at your next appt

what your hep suggests you use for minor pain relief, should you need it. For

example, my hep tells me to avoid aspirin and okays reasonable amounts of

Tylenol. This advice wouldn't fit everyone.

>

> Have you had Hep A and B vaccines? If not, you might want to do so. My doctors

strongly recommended it; they advised it for my husband as well, to give me

further protection.

>

> Be sure to keep current on all vaccines -- depending on your age and health,

that might include flu shots, pneumovax, tetanus, and shingles (herpes zoster)

in addition to Hep A & B. I mention shingles because those of us who take

immunosuppressants for AIH are particularly vulnerable to shingles, yet the

vaccine's use is questionable once we begin taking those immunosuppressants.

>

> Not everyone with liver disease develops cirrhosis; I'm glad to hear that you

have not.

>

> Many of us like Dr. Palmer's book, " Guide to Liver Disease " . It's a

mainstream publication directed toward people new to liver disease. If you can't

find it locally, Amazon has it for under $20.

>

> Best wishes.

>

> Harper

> AIH dx 2000

> CD dx 2002

> female, 67, northern CA like you - SF and Sea Ranch

>

>

>

>

>

>

>

>

> [ ] No diagnosis

>

>

>

>

>

>

> Hello Everyone. I am new to this board. I wanted to learn more about AIH

> and other liver diseases and hopefully receive feedback from others

> based on their experiences.

>

> At this point it is unclear what I have. Since mid Sep 2010 I had

> significantly elevated liver function tests (LFTs) (ALT peaked at

> 1,800), with jaundice, tiredness, digestion problems. By most measures

> it was a pretty severe acute hepatitis. By November the ALT had fallen

> to 260 and I have been asymptomatic, but in December the LFTs went back

> up again (ALT=750). I am still feeling normal. Hep A, B, C, E, or G

> viruses were all negative, and a rather large list of autoimmune

> antibody tests also came up negative. Liver biopsy showed fair damage to

> liver, but no cirrhosis (yet), and was otherwise inconclusive in

> identifying the cause. So were the ultrasound and CT scans earlier. My

> liver specialist initially thought I may have an " uncommon form of AIH "

> and wanted to put me on Imuran, but later ruled out AIH due to lack of

> specific autoimmune indicators. He also ruled out other autoimmune

> diseases like PBC, and ruled out tumors. At this point, he is unable to

> diagnose. Interestingly, I had a more mild elevated ALT episode 10 years

> ago also (ALT peaked at 400), which returned to normal after about four

> months. At that time, all hep virus and a various antibody tests were

> also negative. Since then my LFTs have been all w/in normal range.

>

> So a few months ago my liver got nailed with something that caused

> significant liver inflammation and short-term jaundice (but no liver

> enlargement or pain at all). From what little I know, I think I may have

> AIH simply because of what happened 10 years ago, although it is unclear

> whether the two events are really related.

>

> I would greatly appreciate any feedback or observations you may have on

> what I wrote above. Does AIH manifests itself with periodic flare-ups

> that get worse with each flare-up? And in-between flare-ups, do the LFTs

> return to normal or do they chronically remain elevated?

>

> Thank you.

> Lazsas

>

> (male, 47, in N. Cal.)

>

>

>

>

>

>

>

>

>

>