Sorry to jump in on your thread Blackbart, sounds like we are in similar stages of trying to get a diagnoses.



Dragonslayer - you have just described the presentation of my symptoms exactly - I am currently under investigation so haven't been diagnosed. I am at the stage of X-rays and waiting to see a rheumatologist. The current flare started 4 months ago. I definitely have the costochondritis mainly on my right side and have had it seriously once before about 4 years ago when I was also sick and no one could work out why (also had rash on right rib cage and hip bone that time). I am experiencing new symptoms this time, that is apart from rib cage, buttock, neck and lower back pains which I have had on and off forever, with the main ones being asymmetrical causing problems walking on my right leg for longer than 5 mins - my leg is soooo stiff like it has been cemented with all tendons, ligaments, bone and flesh feeling joined together, my hip joint is very inflamed as is the knee but mostly the ankle and achilles tendon which is so tight it is causing pain into my calf and down into my last three toes on the right foot (it swells after exercising at the back of the ankle). It really hurts to walk and I am only 36 with powerwalking my favourite exercise till a few months ago. I can now only manage very slow speeds for short periods of time and find I can't walk up hills due to breathing issues with my ribcage. I am also suffering acute episodes of pain between my shoulder blades that radiates out in a nerve like spider web pattern, it makes me nauseated and very sick. I am waking early in the mornings, getting out of bed isn't too bad, rolling over can be an issue but it is once I am up I feel 100 due to the stiffness in my spine and right leg. I can do 1 hour of Yoga with short walking stints on the treadmill and feel some relief but still be somewhat stiff afterwards (some days are better than others). I had neurological symptoms for a period as well and have already seen a neurologist who is watching me and I am to return after more MRIs next year (MS not evident at all brain and upper spine clear of visible lesions). My Chiro suggested I see a rheumatologist as she felt my presentation had moved into that area. Tests for RA negative, CRP up from previous tests but still in high normal range (note have been on paleo anti-inflammatory type diet for sometime but still had starches, take fermented cod liver oil and don't drink much or smoke), ESR low.

Just reading what you have written makes me think I might be on the right track with AS - the GP questioned me and said if I had AS I would have higher CRP but I said only in 50-70% of cases. He seemed to take notice when I told him if it turns out in 5 years I am diagnosed and it is too late to save the use of my leg will he be questioning my CRP then. Apparently not as he ordered a lumbar x-ray and gave me a referral. I suspect the x-ray won't show anything as from what I have read it takes years for x-rays to show things. Is that correct? (I suppose it depends on how long you have had a problem without knowing).

Again sorry to jump the thread. I was just so amazed at your description. Kaz

That's great, well done sorting that out! I tried something similar with my doctor about a test I wanted, and I managed to persuade her, but then she explained that as it was on the NHS, she still couldn't order the test as the lab will refuse to process anything that doesn't have the correct reasons for being done. Blah!

I definately roll out of bed. And then sit massaging my plantar fascia on the left foot. Then I slowly force myself to relax my shoulders which are up around my ears lol, which hurts, oww, and then I get up and hobble to the bathroom... I don't have a diagnosis and I have no way of getting one (had the standard blood tests that the NHS will do for joint pain eg RF, CRP, and they were normal, so according to my doctor I have depression. I'm okay with it at the moment, I respond well to the diet so hopefully can keep it under control with that. If not, I will have to go back and try again.

CRP is a funny thing, when I had my checked I was still eating gluten and was so inflamed. I had inflamed austachian tubes blocking up my ears, asthma, joint pain, stomach pain, pretty much everything was messed up lol, yet my tests all came back normal (I was not tested for celiac, doctor didn't consider it a possibility as I had gained weight, not lost).

Hey, blackbart:



Yes, I would estimate this further supports Your idea. The nodules upon the neck and sometimes under the arms are not uncommon in AS, and probably due to localized lymph proliferation as a result of the disease process.



Cause and effect (stimulus to response) are not 100% every time in AS. There are myriad variables. Most of us can get away with eating an otherwise very dangerous starch on rare occasion, however, it is a statistical tendency instead of an immediate reaction in many cases which makes is more and more difficult for fellow ASers to believe, but the state of the tract and food combinations will make the differences. There are foods that I used to always react to, but no longer do because perhaps my gut is healed up considerably from where I began with diet and antibiotics.

It is great to notice when You are not in a flare condition, but most of us notice the negative—when we flare. Some have observed that they flare in winter and especially around Christmas and Thanksgiving so these are feasts where we ‘break bread’ with each other. In winter, our vitD levels can crash, also. I always felt much better out on the boat, water-skiing than snow skiing—vitD is vital for intestinal tract. Also, times of fasting or low food intake can result in a brief vacation from AS in general. I used to control my symptoms through extended fasting alone.



I am convinced, after meeting several people who controlled their symptoms through diet, that this method can totally halt the progression of AS. However, it is my preference to add antibiotics to my own treatment plan so that I do not need to be so assiduous most of the time.

I hope that You can get some insurance and pursue a diagnosis, but most physicians (even and sometimes especially rheumatologists) are not as careful about differential diagnoses as they should be.

Patience, persistence, and perseverance will pay,
HEALTH,
John

Hi, Kaz:

You don't need to worry about jumping in--the threads are for everyone, so never feel shy; we are all learning from each other this way.

Better than X-rays to check for fusion if You do not suspect--because in men it takes sometimes over 6-10 years and women can be 15-40 years into this before fusion of SIJ (and sometimes women just do not fuse there). But again better than X-rays would be nuclear bone scan that can highlight inflammation better than mri, also. Still, however, if You know You have inflammation there is no adequate description of the pain to physicians or other civilians--they just don't get it (and I usually hope they never do).

But yes, feeling young in old body is one common general complaint for all ASers--"brain fog," crushing fatigue, and dry eyes. Feeling sometimes better when we get the flu at times, etc--there are many subtle things that are just not normal with us and cannot be articulated by the physicians very well.

The "inflammatory markers" thing is common, too--so many of us just don't have elevated CRP/ESR and it is a major source of frustration for those people who the doctors eventually misdiagnose as "fibromyalgia."

Hang in there and demand the HLA B27 test and others, but it certainly sounds like You are a member of this club!

HEALTH,
John

In the early years of my AS, I would have weeks of being free of pain. Each year, that time span was reduced. After a few years, I would occasionally have a few days of being pain-free. After 10 years, I had constant pain. AS tends to run differently in each of us. I wish I had KickAS back then. I'm doing so much better now on NSD.

--Greg

Hi again all. Today is my seventh day on a no starch diet. Atleast, I attempted a no starch diet. The nuts I snacked on last night were these:

http://www.mrsmays.com/product_details_mrsmays.html?GoCate=1&indx=22

Which have rice malt listed as an ingredient, whose starch content I'm uncertain of. Also, I looked up the various fruits/berries I've been eating on the USDA food database, and one or two have trace amounts of starch.

I did test those nuts with iodine, but wasn't able to detect any. I wanted to test my olives as well, but kalamata olives are already a dark purple, so I didn't know how to. I need more experience with this iodine testing.

I am feeling *slightly* better, but given that I am in early stages of AS, if at all, I was really hoping for better results by now.

I am posting my food log for the week. I hope a resident expert may be able to chime in with with anything I should have avoided during this week (I was going for NO starch).

I've also been trying to avoid dairy, but you'll notice I had plenty of heavy cream in the beginning of the week. Chalk it up to adjustment ;-). I ran out and don't intend to by more.

I appreciate any input.
Thanks again

Food Log:
BEGIN KETOGENIC FAST / NSD/LSD
2011-10-21:
Stiffness: 7
Food: 12:30pm: coffee with heavy cream
5:30pm: smoked salmon + kimchee + seewead salad
10pm: beef + brocolli cooked in olive oil with lemon and oregano

2011-10-22:
Stiffness: 8
Food: 1pm: leftover beef + brocolli (forgot lemon this time though) + kimchi + bacon + coffee with heavey cream
6pm: leftover beef + brocolli, heavey cream (almost ate kimchi again -- just remembered it has peppers which I'm trying to avoid -- DOH)
2am: salad with olive oil and apple cider vinegar + shrimp

2011-10-23:
Stiffness: 8
Food: 3pm: salad (spinache + romaine) with olive oil + apple cider vinegar + ~8oz ribeeye steak
8pm: salad (spinache + romaine) with olive oil + apple cider vinegar + shrimp, 1/2 cucumber
11pm: leftover beef + brcolli, sauerkraut

2011-10-24:
Stiffness: 7
Food: 11am: coffee + heavy cream
1pm: mixed greens with olive oil + balsamic vinegar + left over ribeye steak (8oz)
END KETOGENIC FAST
8pm: grapes + rasberries + blueberries + strawberries
11pm: mixed greens ("organic spring mix") with oil olive + apple cider vinegar + salt, chuck steak with oil olive and salt

2011-10-25:
Stiffness: 6
Food: 2:30pm: fruit (same as yesterday @ 8pm)
4pm: pickle
6pm: mixed greens ("organic spring mix") with olive oil + balsamic vinegar, 16oz angus steak

2011-10-26:
Stiffness: 5
Food: 11am: coffee + heavy cream
1pm: chef salad (no cheese, no onions, no egg, little bit of peppers (removed most)
7:30pm: fruit (see 2011-10-24)
8:30pm: mixed greens ("organic spring mix") with olive oil + balsamic vinegar + salt, ~4oz leftover steak
11pm: pickle + hotdogs (applegate farms, grass-fed beef) + sauerkraut + 2oz mixed pomegrenate juice drink
snacked on olives

2011-10-27
Stiffness: 6
Food: 6:30pm: mixed greens ("organic spring mix") + olive oil + balsamic vinegar, lamb chop
7:30pm: fruits (as yesterday)
snacked on olives & nuts throughout the day

2011-10-28
Stiffness: 6
Food: 2pm: mixed greens (romaine + spinache) + olive oil + balsamic vinegar, lamb cop (leftover)

I have heard that red meat can contribute to inflammation. Perhaps while already in a state of inflammation, eg "flare", try to avoid a ton of red meat and see if the stiffness goes down. Fish and chicken are good and safe.

Other than that it looks like you are on the right path. Similar to my eating plan. Good Luck!

I find it doubtful, but I am willing to give it a shot. I will try to eat mostly fish this week, along with some chicken. Luckily my mom already made Salmon today. And actually I have been craving clams. Usually I dip them in butter but I am avoiding dairy -- can someone recommend an alternative safe sauce for me?

I was on the NSD for approx 28 days and felt no benefit. I've also been tested for HLA-B27 and came up negative. For these reasons I no longer believe I have AS. However, I know that something is not right. Does anyone have any suggestions for me?

Thanks all

Hello Blackbart,
From your post, this unqualified mechanic doubts that you actually have AS. The lack of SI, rib-cage, or sternum pain specifically, coupled with being HLAB27 negative, indicates some other type of reactive arthritis IMHO. I have a daughter who has had the type of symptoms that you describe and tested negative for the marker. She is your age now and is not developing classic AS symptoms either.

At least you have some clues to help you. Lymph system problems indicate an immune disorder. The CRP indicates an inflammatory response. I would investigate in that order.

I realize this still leaves you open to everything from toxic exposure to HIV. You are taking responsibility and that is the part that is essential to wellness.

Best Wishes,
ike