Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Symptoms of AS but no Diagnosis

Hello, I am new to this site and this is my first post. I am looking for some information and feedback from others with AS. I have several AS symptoms, however my rheumatologist has ruled out this dx.
I have a hx of various symptoms, the main issues have been with my back (back pain starting in 20's, several herniated and bulging discs in all areas of spine, DDD, facet joint arthritis, vertebral fracture) resulting in constant, chronic pain around 3/10 which increases w stationary position or over doing any activity. I was taking narcotic pain management, however titred myself off. More recently I have been having joint pains in many of my joints (hands, wrists, elbows, shoulders, ribs, hips, knees, ankles, feet), I have stiffness in my joints upon waking for several hours, plus the stiffness and pain interrupt my sleep necessitating my getting up and stretching and moving around a bit, and I find that I need to keep moving, changing position, otherwise I get stiff quickly, and I also have crepitus (clicking sound w rolling joints) in my joints upon movement. I am HLA B27 positive and also have a hx of IBS, vertigo, poor immunity to infectious disease, TMJ, mild anemia, and chronic tendonitis in my feet w inflammatory arthritis present, and flare-ups w my back where my pain increases to 7/10 and ROM in my back decreases (my partner took me to the er a few times in the past for these episodes). My family medical hx includes my father having RA, my brother w MS, and my maternal grandmother had severe arthritis in her back (but no medical assessment or management, so possibly AS).
I have had ultrasounds of my ribs, hands, feet & ankles, MRI of my spine, but not significant amts of inflammation present in my joints to make dx upon reviewing DI and physical assessment.
I find it all to be a bit overwhelming, confusing, and frustrating. The joints in my hands have swelled so that I can no longer wear most of my rings but little signs of inflammation in these joints...The rheumatologist has dx me w arthralgia, no explanation as to cause, no idea of prognosis, and suggested I get referral to physiatry for interventional pain management (cortisone inj & nerve block inj in spine, etc. & narc. pain management).
I am currently managing my symptoms by taking acetaminophen 4 grams and ibuprophen 1200 mg daily & just started arnica montana, 200 CH, 3 pellets, 3 x daily. I do stretches throughout day that I learned form physio. My average pain score is 5/10 throughout day.
I'm hoping that maybe others have suggestions that may help enlighten me a bit more as to what else I could be doing to manage my symptoms or get closer to a dx. Thanks for reading my post.

Sounds like AS. I'd recommend getting over to the diet-related part of this forum. Fast for several days, and if you see improvement, then you know you have an inflammatory/autoimmune/reactive condition of some kind.

WELCOME, Auggie:

Certainly, You have Pre-AS which is the proper diagnosis before damage Professor Ebringer's note 5. It runs in the family, despite myriad misdiagnoses; I hope You will explore other posts.

I hope that You are able to avoid the fusion and never need to be diagnosed properly; full AS is too often the result of the ignorance (benign neglect) of which You have already been subjected. Carol Sinclair cannot get an "official" AS diagnosis because her SIJs never fused--thanks to her diet.

HEALTH,
John

Hi I agree with Exacta

Hi Exacta,
Thx for your response. I am and will be reviewing the postings re diet in this forum. I am looking a bit further into fasting prior to trying this as I am breastfeeding. My typical diet is highly dependant on starches (breads, pastas, rice, starchy veggies), but I am willing to try this approach and will post if I respond well. I am curious how long it takes to notice an improvement, whether I might notice over a few days, weeks, months?

Auggie - Many people experience quite a bit of improvement in merely days or just few weeks. This was my experience.

However true remission seems to be a multi-year journey for most. The belief is that your digestive tract needs to undertake a prolonged healing process. I am about 15 months into mine. I have good days and bad.

Hi DragonSlayer/John,
Thx very much for the welcome and reading and responding to my post. Thank you as well for the link to the paper by Professor Ebringer; this was insightful and gives me hope. To whatever end, I plan on having a discussion w my rheumatologist upon my follow up appt. To have someone in the medical community advancing our understanding of this disease and asserting that people can be AS sufferers without it being in the advanced stages is highly vindicating; but I find it also disconcerting that there can be such differing views (whereby my rheum. was suggesting that my symptoms may be a result of stress). It seems that many health professionals are not keeping pace w medical advances.
As for Carol Sinclair, I will be ordering her book on the no starch diet.
Again, thanks

Hi Auggie,

Why has your rheumatologist ruled out an inflammatory condition? Have you had all the relevant blood tests (including auto antibody screen, rheumatoid factor and full blood count)?

Did you experience any changes in your symptoms during pregnancy?

I'm new to KickAS too, although I must admit to visiting the forum more-than-regularly to see what was going on. It was hugely valuable when I started on the NSD (really difficult when you're working in remote field camps for weeks on end and the food options are rice or nothing...). I feel bad for not contributing previously but here I am now.

Best, Ag

Welcome Auggie:

Your body sounds like mine. I had a bowl of millet this morning with honey, blue berries, and walnuts with a cup of chocolate coffee.

I am not the poster child of the No Starch Diet but I STRONGLY advocate it because it works for me when I have the discipline!

I feel a change in just a few days, then a big change after a month. I never have had the strength to go longer. A danger is I feel so physically good and in such a high mood that I throw caution to the wind and go nuts on chocolate, cheese cake, nuts, etc. Then I find myself back at square one.

A few on this web site have reported being very starch tolerant after being diligent with the NSD for at least a year.

Good luck1

I wonder how NSD advocates manage over Christmas and this is not a dig at anyone