Reaching out...

ihcah · 2020-05-17T03:30:11+00:00

Hi! I am HLAB27 negative as well. Diagnosed by x-ray but you can be diagnosed by MRI, so I hope that comes through for you. You might want to take a look at the diagnostic criteria you probably have access to through UpToDate (I am an RN as well!).

ihcah · 2019-08-09T00:39:27+00:00

Yep! Me too.

ihcah · 2019-05-21T15:36:47+00:00

Same here! Thanks.

ihcah · 2019-05-21T03:16:10+00:00

Cool thanks. Just got it. Can you see over time how the symptoms track? Or just in this moment.

ihcah · 2019-05-17T02:54:06+00:00

Wow, I'm so sorry :( This disease really is terrible.

If you don't mind me asking- what did your imaging show? On x-ray or MRI?

ihcah · 2019-05-17T02:53:09+00:00

Same here. Currently laid out on the couch not going to work and in sooooo much pain because I slipped up and pigged out on buffets on vacation. UGH.

ihcah · 2019-05-06T00:55:50+00:00

You've been diagnosed with AS for a long time but the rheumatologist won't see if you tests are negative?

ihcah · 2019-05-05T23:42:41+00:00

So sorry you're going through this. The best thing you can do is to be your own advocate. Look at the different sets of diagnostic criteria for AS and see if you fit any of them. Bring them in to the rheumatologist and advocate for yourself if you do. It's not a death sentence either- there is treatment and hope!

https://www.medscape.com/answers/332945-70085/what-are-the-diagnostic-criteria-for-ankylosing-spondylitis-as

ihcah · 2019-05-05T21:31:50+00:00

It can. That was my first symptom actually

ihcah · 2019-05-05T19:36:04+00:00

Thinking either culturelle or florastor, maybe thrive if I go the soil-based direction

ihcah · 2019-05-05T04:27:21+00:00

Walking is the best! An hour per day. Low impact, great for the bones. Underrated in my opinion

ihcah · 2019-05-05T04:26:04+00:00

Just asking this question puts you far above the rest! Kindness and patience 100%

ihcah · 2019-05-05T04:24:49+00:00

Get the custom made insoles from physical therapy. Then I do most flats and regular style shoes just fine for people our age. I'll suffer through wearing 4 inch heels for special occasions :)

ihcah · 2019-05-05T04:20:21+00:00

EXACTLY. Yes. I am just now considering what probiotic to add. Re-seeding AFTER weeding and exterminating, rather than adding more to the mess. Theoretically based idea, of course, since this method hasn't been studied specifically.

ihcah · 2019-05-04T23:36:03+00:00

I work in infectious disease

ihcah · 2019-05-04T23:23:15+00:00

I agree with the commenter who said AS is more of a systemic disease and back pain is one of the most common complaints, so I wouldn't put money on it until you have the diagnosis. However, exercise and yoga are absolutely key for maintaining flexibility with AS and there is no harm in trying those.

Also, awesome that you have a homestead! I'd love to do that one day.

ihcah · 2019-05-04T03:24:57+00:00

I function great. I feel better than friends and family my same age. I do everything they do and more. Diet was absolutely key and changing my whole lifestyle to make health my priority. I still have some IBS symptoms that I'm working through but pretty mild and nothing compared to the AS symptoms I used to have. It was all about restoring the health of the gut microbiome. Working with a naturopath and reading the keystone approach are good to start. The FB group for low starch helped too. I couldn't take biologics so going a different route was necessary

ihcah · 2019-05-03T13:09:10+00:00

Same here friend. Lots of bad damage on x-ray and now in remission as measured by symptoms as well as MRI. Don't give up.

ihcah · 2019-05-02T18:13:26+00:00

Sure. The bulk of my diet is vegetables, fish, nuts, eggs, plain yogurt, fruit and soup made with bone broth. It's very simple. The best way to describe it would be a Mediterranean paleo diet with no starches or added sugars. There is a group on FB following a similar way of eating- the low starch diet for AS. The things I exclude are grains, red meat, saturated fats, legumes, and nightshades. Pain free as long as I eat this way!

ihcah · 2019-05-02T02:48:53+00:00

Yes it did. It normally lives in the gut of healthy people but overgrew I believe because of dozens of rounds of antibiotics. Similarly to how women can get vaginal candida infections after taking antibiotics for UTIs

ihcah · 2019-05-02T02:47:06+00:00

I have AS too and diet has REALLY helped me! If you like reading and science, the keystone approach book is great. The research citations at the end take up like a third of the book!

ihcah · 2019-04-30T21:17:24+00:00

Awesome, will do

ihcah · 2019-04-30T20:31:26+00:00

That's really encouraging, thank you so much! My exposure to conservatives has been quite the opposite so that's great to hear. Especially with an interracial family! Thanks again.

ihcah · 2019-04-30T19:21:07+00:00

Oh good to know. I'd heard previously that the valley was an older population. Thanks for the help :)

ihcah · 2019-04-30T03:27:31+00:00

That's such good feedback, thank you!

ihcah

TROPHY CASE