Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Could anyone help me??Please!!!

Dear All;

My name is Paul. Nice to meet you guys. My first language is not English, I wish you can understand what I am saying. I am really appreciate you guys can take some time to help me

I come from China, but I am living in Toronto now. My sacroiliac joint starts feel pain since 09/2011. First is left side, then last year its became both sides. At the same time I found out I have proctitis. I did MR in China and its shows the sacroiliac joint has some edema. I also did blood test(lots of blood test such as ESR, RF,C-Protein). They are all good and HLA-B27 is negative. So the doctors in China couldn't tell which illness I have. (AS or other illness?)

Then, this week, I went to the johns hopkins hospital(Best hospital in US?) because I feel more pain than before. I know I can't wait anymore. The doctor in johns hopkins said I have AS because I have edema in my joint. To be honest, I feel so sad about myself when I know the truth and I still don't believe I have AS. The doctor asked me to do some blood test and XR. The blood test is good again, but the XR shows not good.

XR result:
RESULT: History of axial spondylarthritis
2 views thoracic spine. Unremarkable. No definite anchylosis,
spondylosis, osteophytes or other abnormalities

Two views pelvis. Minimal left lateral acetabular osteophyte or reaction
which may contribute to early pincher impingement. Incompletely seen SI
joints and hips are otherwise unremarkable.

Lumbar spine 3 views. Less than 5 degrees right lumbar scoliosis, normal
psoas margins. Minimal flattening of normal lordosis. No significant
abnormality disc space, endplates, posterior facets. Unremarkable lumbar
spine.

Cervical spine 3 views. Unremarkable exam.

1. Guys, I still cant believe I have AS, what's you guys thinking?

2. Guys, my English is not that good, could anyone help me to translate to a easy way for me to understand? The results are bad or good ? Which part of XR result is not normal ?

3. I found out the Lumbar spine is not normal is that means its start to encroach my spine and its intermediate stage now ?

4. The doctor ask me to use Humira because I also have proctitis, I can't take painkiller. Should I start to use right away?

5. I am not Canadian, I just have work permit, but the cost of Humira is really expensive, anyone knows how I can apply for an assistance program?

6. Could anyone tell me what I need pay attention to about my diet? What food is good for AS? What food is bad for AS?

7. I usually go to gym everyday, but I don't really know what kinds of item or sports are good for me,Like swimming. I am afraid I do it not right then its become worse. Is it necessary to have a personal trainer?

8. I am really sacred now, to be honest, I still don't know what's the situation of my illness . Its in early stage or what? I will be disable ?? I AM REALLY SACRED. My parents cry for me a lot. I don't how to say, but please help me. And also I have to find a good doctor in Toronto. Could you guys recommend me a good AS doctor in Toronto ?


I know its a long story, I am really appreciate you guys can read them all and help me. I am sorry about my English. Again, thank you so much.

WELCOME, PaulHan:



The results are WONDERFUL! Now at least You know the process is starting (a very small amount of damage) so You can perhaps make the right choices to avoid more damage in future.



No, I would not say "intermediate stage;" this is still very early and exactly where and how AS typically begins.



Yes, if You can afford it, otherwise there are even better methods to control AS (treating the CAUSE instead of chasing SYMPTOMS).



Sorry, I do not know, but Good Luck!



Yes--DO NOT EAT STARCH! Especially FRIED and BATTERED stuff. But do especially avoid the "four major poisons:" Bread, cake, pasta, and potatoes. TEST EVERYTHING with iodine per Carol Sinclair's book "The IBS Low-Starch Diet." You can fast (water only) a week or more and then prove to Yourself the connection between AS and food.



SWIMMING is the best exercise for AS. Don't need a trainer, but also good to do some weight training after getting out of inflammation.



The early stages of AS are the worst. I WISH I had heard (especially from the people I was paying big money to...) that I had control over whether I would become crippled and that control is diet and lifestyle in general. You are young enough to benefit from this, and I hope that You will avoid the permanent skeletal damage of improperly treated AS.

HEALTH,
John

John, I am really appreciate you could took your time to read my case and help me. I don't know what to say more to thank you. I was born in China, and most of doctors in China just think about the money. Your advice is much morn than what my doctor told me before. I am really appreciate. Thank you so much. Welcome to Toronto or China for traveling. I willing to be your guide:)

Hi Paul,

I'm very confident and hopeful that if you follow John's advice in relation to diet that your symptoms will back of and you can find peace of mind.

Don't hesitate to come back here in the weeks and months ahead as you fine tune your dietary approach.

I look forward to hearing about your progress.

Cheers David.

Paul, if you are now living in Toronto, see if your GP will refer you to Dr Robert Inman at Toronto Western Hospital Rheumatology Clinic. He is one of the top international experts on AS and the use of biologic medications in the treatment of AS. Take your Johns Hopkins results to him and see if he will take you on as a patient.

Dr Inman was my rheumy for over 10 years and I sorely miss him since I had to move. Toronto Western is part of the University Health Network, so it's a teaching hospital. Several of Dr Inman's fellows (sort of student researchers) are now considered top in the field as well - one in the UK and one in Ireland.

You've found the best support site on the internet here at KickAS.

Warm hugs,

Hello Paul, you have received good advice so far. Explore all options. The diet is an easy, no risk option to try for a significant time. Many members here have reported positive improvements following the no starch diet BUT it has NOT worked for everyone so AS is not so simple. You can try the diet and why not seek the opinion of the Dr that Inanna mentions while you are in Canada. It is wise to read a lot and consider all options. It is common to get discouraged when something doesn't help, therefore people need to know there are many options available. Best wishes

Dear all;

I am really appreciate you guys opinions and I am so happy that I can find this place, which liker ASer's Home. You guys are so kind. Thank's again.

And also , I come from China, but if I want to try NSD is that means I can't eat rice everyday ?

Hello, PaulHan:

Extreme disease calls for extreme changes.

It was CHINESE food that really tipped me off to the food connection; a meal of fried rice I shall never forget!

Be thankful You are not from India! Everyone complains: Irish no potatoes, Italians no pasta, Mexicans no tortillas, Middle Easterners no hummus, etc etc.

The thing to do is get over it and find starch-free substitutes; there are many good books that can help, but we not only need to "go paleo" but make certain our choices are safe, especially in the early days of the diet--once we have achieved remission, it is very natural to "experiment" to find our starch tolerance levels and search for new food choices.

Hope You join us on the NSD and diet Forum!

HEALTH,
John

Dear all;

Thanks a lot John and the rest of people. I am really appreciate you guys helped me and gave me a lot of advices.

I feel really really sad when I think I have AS. I can't do what I want to do (I wanna go back to China to create my business but due to the cost of Humira in China I can't go back) I can't eat what I want to eat, but hope the NSD can work for me. I still have couple questions if anybody can help me that would be wonderful.

1. I searched online and found out the NSD may work for some of us but not all of us, Is anyone can tell me the principle of NSD ? Why its can help us control the AS ?

2. I really want to know how many precent of AS patient will be disable or joint fused ? I mean, normally how many precent ? I know everybody has different situation.

3. My doctor told me HLA-B27 (-) is much better and HLA-B27(+). Is that ture?

4. What kind of lifestyle can help us ? Sleep early, wake up early and swimming? What else?

5. The sexual life or masturbation will let us become worse ?

6. What can I do if the NSD and the biologic medication both not working for me? Just swimming everyday ?

7. Is there any AS organization in Toronto that I can join and help other AS patients ?


I am sorry I have so many questions now, I just feel sad about myself now but at least I found here. I feel MUCH BETTER when I see so many people are helping and encouraging each other at here. Once again, I am really appreciate you guys. Thank you so much.

I'll try to address a few:

2. I really want to know how many precent of AS patient will be disable or joint fused ? I mean, normally how many precent ? I know everybody has different situation.

won't answer directly, because i don't know. but i'll tell you that my flares are cyclic so even if I'm temporarily nearly disabled, it doesn't last...til the next time. and i was so much worse before, was very close to needing to take disability from work...then i found a rheumy who dx'ed me and started treating me, then was given methylpred, then finally humira. and though things are not perfect today, things are so much better. so don't give up hope; you never know what is around the corner.

3. My doctor told me HLA-B27 (-) is much better and HLA-B27(+). Is that ture?

i don't know the answer to this either. but i will tell you that i am hla-b27 negative (one reason they decided to dx me with undiff spondy) and though the GI stuff is pretty bad and the joint stuff horrible, i don't get iritis, "only" dry eye. my eye doctor said that there is a higher correlation between hla-b27 positive and iritis, so maybe that's a good thing to be negative. and too, maybe its why members of my family don't fuse? or maybe cause women are less likely to present like men?

4. What kind of lifestyle can help us ? Sleep early, wake up early and swimming? What else?

I think taking good care of one's health, the best that one can. Eat whole foods vs junk. Get as much sleep as you can (pain often precludes that). Exercise as much as one can (pain and disfunction can make that a challenge). Try to remove as much stress from one's life as possible. I also found that some of the supplements seem helpful (see below my name). Just try to take good care of yourself.

6. What can I do if the NSD and the biologic medication both not working for me? Just swimming everyday ?

As for biologics, some people have to try several before they find one that works. humira worked right away for me; i was lucky. my aunt was on remicade for about 2 years, it just wasn't helping much. She's now on Stelara and she says its so much better for her; her psoriasis is nearly gone now, and her joint pain is much better. so you can try different ones if one doesn't work. But too, i still flare on humira, so don't think a flare means it stopped working...sometimes my immune system is more stubborn than the drug is powerful, sometimes the drug wins out.

Too, i've found that a combination of diet, exercise, supplements, humira, and LDN...with an occasional aleve, and rarely methylpred is the answer. Its not one thing, but all of it combined that helps.