Re: New here and to RA (kinda long) - to Harold Weiss

[Guest guest]

To Harold Weiss,

I was mistakenly diagnosed with RA. I was finally diagnosed with anklyosing

spondlylitis. While inflammation is mostly in the spine, including the neck and

extending down to the hips, it can also affect other areas as it is a systemic

disorder. When I am having a flare, I get sharp pains in the little joints in my

left foot, and both feet swell. After treatment with antibiotics and Enbrel, my

shoe size went from a 10 to a 9. So, AS is a possibility to check out. I don't

have the blood markers for AS but all of the clinical symptoms. Enbrel is a

dangerous drug but it helps incredibly along with the antibiotics.

E

________________________________

From: ehgooding <ehgooding@...>

evelynsasser@...

Sent: Mon, July 5, 2010 10:27:42 PM

Subject: FW: rheumatic New here and to RA (kinda long)

The link below

may be of interest re a starch free diet for AS. At least I hope that’s

what this is! El

________________________________

From:ehgooding

[mailto:ehgooding@...]

Sent: Monday, April 26, 2010 4:11

PM

'rheumatic '

Subject: RE: rheumatic New here

and to RA (kinda long)

Dear Harold,

Reading your post made me think of (Dragon Slayer’s AS

story) about getting better on a starch free diet; I’ve copied the link

here in case it helps. Regards, El

http://www.rbfbb.org/view_topic.php?id=872 & forum_id=3

________________________________

From:rheumatic [mailto: rheumatic ] On Behalf Of

Harald Weiss, Technical

Marketing Group

Sent: Monday, April 26, 2010 3:20

PM

rheumatic

Subject: Re: rheumatic New here

and to RA (kinda long)

Charlotte ,

Your symptoms sound exactly what I am going through right now.

I have been seeing rheumatologists for over 10 years now, and am

currently on the antibiotic protocol (AP) for the second time. I have

had four different diagnoses by four rheumatologists over these ten

years: rheumatoid arthritis, pseudogout, polymyalgia rheumatica, and

most recently, reactive arthritis. The challenge for rheumatologists

is that all my blood tests come back normal and there are no crystals

in my synovial fluid, so the diagnosis of reactive arthritis is what

remains after other rheumatic diseases have been ruled out.

Fibromylagia does not explain swelling of foot pain.

I now question if I have reactive arthritis or a rheumatic disease at

all. After extensive reading, I have come to the personal conclusion

that of my symptoms may all be due to delayed food sensitivity, or at

least be aggravated by food sensitivity. I had my blood drawn for

food sensitivity testing this past Friday, and will see an allergy

specialist for the first time tomorrow, Tuesday.

Rheumatologists are a conservative lot, and should only be trusted so

far. My current rheumatologist denies that there is a such a thing as

food sensitivity, but food sensitivity has been associated with

swelling and pain in feet and ankles, as well as skin rashes (hives),

joint and muscle pain, nasal congestions, and a lot more.

I will keep you posted. Please keep me posted as well.

Sincerely, Harald

At 11:06 AM 4/25/2010, you wrote:

>

>

>Hi, I'm totally new to all of this, any experience, advice, etc

>would really be appreciated. (sorry this is long, I couldn't figure

>out a short version to explain)

>

>I've always had occassional strange pains in my feet and ankles

>(hurts when I get up and start to walk, feels like I'm going to

>fall, feet burn and feel bruised after wearing shoes) for years, it

>will flair up for weeks or months and then fade away (my calfs,

>ankles and feet are constanly swollen, hurts to wear socks). Had

>carpal tunnel found in 99 and had surgery. Slight back pain and hip

>pain every now and then. My knees started acting really bad a year

>ago, started leaning myself on the wall to feel safe on stairs so I

>wouldn't fall if they gave out.

>

>I checked with friends on a group I'm on, many told me to go to doc,

>could be RA, fibro, etc. I decided I must be making a big deal out

>of nothing, I couldn't have anything like that and decided to ignore

>it all until the last couple of weeks.

>

>My elbow starting hurting all the time, tender to touch, one night I

>was in pain everywhere, no over the counter meds were touching it

>and I couldn't concentrate on anything because of the pain. Next

>morning I couldn't close my hands to make a fist, had to have help

>to get down stairs etc. I could hardly walk when I first got up.

>Went to doc, they sent me for blanket blood tests, talked of

>possible fibro. Called me back next day saying nothing wrong, just

>liver function off (probably due to regular meds), said my sediment

>test (?) was normal. I still couldn't tighten hands (and other

>problem areas still hurting) and now my middle fingers on both hands

>wouldn't straighten all the way. I had to push them to look further

>into it. They gave me prescription anti-inflamatory and sent me for

>RA test. Called me back again, my RA result was extremely positive

>(in their words) and because of 3 family members with RA and my

>symptoms, they feel I have RA.

>

>A week of anti-inflamatory and I'm basically back to normal now.

>Stopped taking them Friday night (didn't know if I needed to keep

>taking them when I wasn't hurting anymore)

>

>Because I'm in Canada ,

I will have to wait weeks for my referral to

>a rheumatologist.

>

>What kinds of things should I expect visiting a rheumatologist? Do

>you think RA is the diagnois they'll stay with or will they be

>testing me for other possible causes??

>

>Thanks so much for reading my novel, Charlotte

in Canada

>

[Guest guest]

,

My first email to you today was an academic response. This time let

me thank you for your email, which gives me hope.

Earlier this year, my rheumatologist denied that my foot swelling had

anything to do reactive arthritis -- which was his diagnosis for me.

Your experience tells that swollen feet can be tied reactive

arthritis, and most important, that Enbrel can be the answer.

Sincerely, Harald

At 08:40 PM 7/5/2010, wrote:

>

>To Harold Weiss,

>

>I was mistakenly diagnosed with RA. I was finally diagnosed with

>anklyosing spondlylitis. While inflammation is mostly in the spine,

>including the neck and extending down to the hips, it can also

>affect other areas as it is a systemic disorder. When I am having a

>flare, I get sharp pains in the little joints in my left foot, and

>both feet swell. After treatment with antibiotics and Enbrel, my

>shoe size went from a 10 to a 9. So, AS is a possibility to check

>out. I don't have the blood markers for AS but all of the clinical

>symptoms. Enbrel is a dangerous drug but it helps incredibly along

>with the antibiotics.

>

>E

[Guest guest]

Harold,

Not only do my feet swell, my hands get stiff when I have an attack.

E

________________________________

From: " Harald Weiss, Technical Marketing Group " <hweiss@...>

rheumatic

Sent: Tue, July 6, 2010 8:11:47 PM

Subject: Re: rheumatic New here and to RA (kinda long) - to Harold Weiss

,

My first email to you today was an academic response. This time let

me thank you for your email, which gives me hope.

Earlier this year, my rheumatologist denied that my foot swelling had

anything to do reactive arthritis -- which was his diagnosis for me.

Your experience tells that swollen feet can be tied reactive

arthritis, and most important, that Enbrel can be the answer.

Sincerely, Harald

At 08:40 PM 7/5/2010, wrote:

>

>To Harold Weiss,

>

>I was mistakenly diagnosed with RA. I was finally diagnosed with

>anklyosing spondlylitis. While inflammation is mostly in the spine,

>including the neck and extending down to the hips, it can also

>affect other areas as it is a systemic disorder. When I am having a

>flare, I get sharp pains in the little joints in my left foot, and

>both feet swell. After treatment with antibiotics and Enbrel, my

>shoe size went from a 10 to a 9. So, AS is a possibility to check

>out. I don't have the blood markers for AS but all of the clinical

>symptoms. Enbrel is a dangerous drug but it helps incredibly along

>with the antibiotics.

>

>E

[Guest guest]

P.S. My rheumatologist is in Rockville, land. He is superb. He is a former

NIH fellow and a world class human being. I wish he were interested in AP, but

he did consent to the antibiotics after I had seen him for a while.

Does your neck feel like it has barbed wire in it? Do your hips feel that way,

too? I get very, very stiff and find it nearly impossible to walk when I have a

relapse. And, yes, I have a few joints in my left foot that start to hurt like

crazy when I walk. I can't wear high heels. When I am in relapse, I wear

four-inch stilettos and walk (fairly) straight and tall.

E

________________________________

From: " Harald Weiss, Technical Marketing Group " <hweiss@...>

rheumatic

Sent: Tue, July 6, 2010 8:11:47 PM

Subject: Re: rheumatic New here and to RA (kinda long) - to Harold Weiss

,

My first email to you today was an academic response. This time let

me thank you for your email, which gives me hope.

Earlier this year, my rheumatologist denied that my foot swelling had

anything to do reactive arthritis -- which was his diagnosis for me.

Your experience tells that swollen feet can be tied reactive

arthritis, and most important, that Enbrel can be the answer.

Sincerely, Harald

At 08:40 PM 7/5/2010, wrote:

>

>To Harold Weiss,

>

>I was mistakenly diagnosed with RA. I was finally diagnosed with

>anklyosing spondlylitis. While inflammation is mostly in the spine,

>including the neck and extending down to the hips, it can also

>affect other areas as it is a systemic disorder. When I am having a

>flare, I get sharp pains in the little joints in my left foot, and

>both feet swell. After treatment with antibiotics and Enbrel, my

>shoe size went from a 10 to a 9. So, AS is a possibility to check

>out. I don't have the blood markers for AS but all of the clinical

>symptoms. Enbrel is a dangerous drug but it helps incredibly along

>with the antibiotics.

>

>E