Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How to deal with AS - Newly Diagnosed

Hi,

I thought you might be a negative, average age of diagnosis is around 38 I think,

How's your IBS? Do you notice if you manage it down that the arthritis calms down as well? How was your IBS diagnosed colonoscopy ? That's important....

I think the SCD is based on several concepts, one of which is the Low Starch Diet/ No starch diet and the original London AS Diet it's on the site here. Goto the home page it's just off there somehhwere.

( I found kickas doing alsorts of funny sympton searches including the foods and I hit kickas everytime....hahhaa When I saw the diet I fell of my chair ).

It's not uncommon to have rheumtoid factors as well, but you get this stuff in your other joints as well and telling the two apart unmmhhhh? The story is we inherit alot of our immune system and you can have a single condition or multiple ones.....

Is n't your thyroid problem auto-immune related?

Dave

Thanks Tim, specially for the Spanish site, I will look for the diet there.

Glad to help, Zeida. If you have access to an Occupational Therapist, I would suggest getting one. Occupational Therapists can come to your workplace, and also to your home, to assess things and make suggestions to help you live and work more easily. The one who made all the suggestions about my work area was wonderful!

Hugs,

Dave,

All of the answers are yes. My IBS was diagnosed last year by a colonoscopy, after I have an accident on my knee and an episode on my skin of something like psoriasis (this was treated first as infection, then as allergy? and then like psoriasis).

And my Thyroditis is autoinmune, this could explain the RF, but the arthritis on my hands and wrist looks like RA, this is why my Rheuma told me that I am like a 'complicated' case.

The CRP is also quite high like in AS, and my Sed Rate is normal, and it should be high if it is RA, but my DR, told me that not always is like this, so I don't know.

Maybe you know more than me on this.

Tk. Zaida

Hi Zaida, like the others have said, Welcome.

Unlike many of the others who have replied, I'm a female who was diagnosed at the early age of 21 having had a couple of really miserable years with pain. Positive mental attitude is the key in my opinion. I managed to continue my work and studies and qualified as a laboratory technician. As my symptoms got better with the right medications I then took a job as a company representative which gave me greater freedom to manage my daily workload and activities. I always made my targets and earnt good money. I then had a child and worked part-time. When he was 7, I went to university and eventually got my doctorate and I'm now a university associate professor (senior lecturer in UK language). That also gives me the freedom to manage my daily workload. Obviously in any job you can't go round letting people down but it certainly helps having days when if I've had a bad night and I don't have to teach, I can get up when it suits me and then I make up the time later in the day or another day. Maybe self-employment might be an option for you or simply making adjustments to your workplace. Keeping active is important as long as you remember to listen to your body (also important advice as you have IBS and thyroid problems) and don't over do exercise. A little bit of stretching and moving around every hour is good.

So, my message is, life is sometimes pretty tough with AS but it is not a barrier to success and happiness. Good luck, Louise

Zaida,

Here is where we are similar.

Late onset.

Sero-negative.

Spend all day in front of a computer at work (I suppose)

If you have been on a low carb diet and drink lot of coffee, and eat a lot of cheese - that would even make us more similiar - before my onset.

AS and another disease - DISH - have very similiar symptoms.

The one Rheumatologist I saw suggested I might suffer from both. Go Figure. He probably finds it easier to sell pharmacuetical meds when there are mulitiple diagnosises (sp?).

I started to supplement with Magnesium Citrate after a natropathic Dr. told a friend it would remedy calcium deposits in his neck. I googled up on "magnesium & arthritis" and read some really intersting stuff, from seemingly reliable sources.

I started to supplement with Magnesium Citrate, dissolved in hot water, and taken like tea. I felt an immediate reduction in pain, stiffness and fatigue. The product I use/used is called "Natural Calm" It is an absorbable form of magnesium. Many dairy products are fortified with calcium. It is easy to get a calcium overload.

Too much calcium and not enough magnesium = calcification of soft tissue

If you are taking calcium supplements, it could be part of your "calcification of soft tissue" problem, especially if you are short on magnesium.

A simple serum blood test for magnesium deficiency is worthless as the body works hard to maintain a constant level. A test that examines content inside the blood cells is necessary.

My family didn't understand the pain either. I have chronic sacroillitis. I am on meds/low starch diet.
Make sure you don't give up until you find a doc who listens. Remember your paying them. I hope you feel better!

Z,

some just get one condition others get lots,. good news is that the right drugs can help all the conditions....

Good about the IBS being diagnosed by colonscopy...... some are just diagnosed without any tests etc and it turns out to be Inflammatory Bowel Disease which also belongs in the AS Psoriasis, IBD, Reactive A family. IBD is nasty .... but keep a quiet eye on it.

Diet wise I notice that the Psoriasis SponddyA patients seem to benenfit from eliminating gluten and or diary ( lactose) .

SpA associated with Psoriasis ?, the athritis you get in the fingers can be very aggressive and so your Dr has a handful determining which form you have. SpA tends to be the reverse of Rheumatoid Arhtritis in that the starting point is the tendons attatchments and then if it gets going your joints swell and it affects the lining of the joint. Rheumtoid is thought to have the opposite attack order lining and then tendons. Psoriasis Spondy Arthritis can be diagnosed by pencil and cup changes seen on X rays. but you want to avoid that before it starts.

I reckon you have a good Dr.

Thyroid

There was quite a long thread on thyroid problems here 2003/2004 it might be worth searching for that as there was a lot of good stuff.


On biologics

With the biologics humira, enbrel, remicade etc, B27 negatives can take longer to start responding than the norm and overall have about 10% less good responses. But with the number of variaties on the market there is usually one that hits the spot. So do n't get too worried if you do n't respond to humira (but probably the best one for you to start).


The advice I think you ought to listen to that I've seen on some of the other replies is take it easy.

In complex conditions you manage to the worst your medication to the worst one.


Dave

Dave,

Thanks for your advise, you sound like my Dr. He explain to me that in my case it will take a little longer to improve, sometimes I feel anxious but it is normal.

He told me that I have all of these conditions for a while, and I could not use NSAIDs because I am allergic to aspirin and that could help me with inflammation. Anyway my last appointment he only asked me if I have at least any improvement, because at this stage he is only looking for that, he explain that there other things that he could be doing but not for now.

Also, he was trying to make me understand that a few years ago the only treatment for the condition was for the pain and swelling but now there excellent treatment for the condition itself, which is great.

The thing is that when you are in the middle of the pain, and not improving as fast as you expect is difficult, but the true is that this is the first time that I am fighting to something unknown.

Thanks for the information about lactose, I will try, I have nothing to loose. Zaida

pd. Yes I found a great Rheuma, it is my second one, the first one diagnose me RA just because of my R-factor, this one since the beginning was great: makes me a physical exam from my toe to my hands, check my bone scan, my MRI, which originally arrived normal and discussed with the radiologist and found the problem in both of my sacral areas in the MRI.

Hi Zaida!

I believe that you found the best site! All of us want support because all the other people that are healthy don't understand how we feel. This don't happen on purpose but with the byway of time they will start to understand a little.

When you will start your therapy you will feel immediately better and free of pain!

Good luck
Natassa