Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New user, newly diagnosed

Your Welcome Beverly,

Hope he can fix you up, and while your at the Oyster Bar eat a few for me, please. I lived in Castroville the first year there so I know Moss Landing is only site seeing and the Oyster Bar.

Have a good one,
Brent

Hi Beverly and welcome to KA!

I'm so glad you found us; although, I do wish you hadn't had to.

I so hear you on the being unable to lift your arm. When I was in the middle of the flare that got me diagnosed three years ago, I would be trying to put something away in the kitchen and as soon as my elbow reached shoulder level, tremours would begin and I couldn't raise my arm any higher. Talk about scary! Thankfully, now that that particular flare is over, I don't have that problem anymore. Hopefully, you'll find the same thing.

Has your GP suggested that you see a rheumatologist? What about pain meds or anti-inflammatories? While in the long term, these can be damaging to us, in the short term they can (if they are the right ones for you) kick a flare in the butt.

You might want to check out the NSD forum, as many of us have had some success in lowering pain and inflammation levels by cutting all or some starches out of our diets.

The Arthritis Foundation will have tons of info on gentle exercises and you might want to look into an aquafit programme, as swimming is extremely good for us. While there are those who disagree, I believe firmly that stretching, strengthening and aerobic exercise is one of the keys to keeping this disease under control. Just start where you are (ie. don't try to run a mile right off if you are only able to walk ten feet, if you know what I mean), go slowly and gradually build up to about 15 minutes of aerobic exercise at a time.

As for chiropractors, I think it was Mig who mentioned that we've had several discussions on this topic here. Just search chiro in the search function of the site and you'll find them. I am, by the way, one of those who believes that chiros can be very helpful to us in managing our disease, as long as your individual condition is taken into account. No torquing should be done, no aggressive popping. Just gentle mobilizing of the spine and adjusting with an activator or integrator when (and only when) absolutely necessary. Your chiro should be willing to listen to you and take your opinions into account when it comes to your treatment.

And by all means, finish up your college. For one thing, while it may be difficult at times, as long as your teachers are aware of your condition and amenable to you standing periodically should you need to, it will take your mind off your pain. Not to mention, giving you new opportunities in your life.

Looking forward to talking with you.

Hugs,

Kat



"A life lived in fear is a life half lived." - Strictly Ballroom

I haven't been able to reach my GP to get a referral. Her office was closed today, too. I'm not sure what's going on.

I've been doing a water aerobics class and the instructor is my age or older, it's geared to us older people. I don't have to keep up, I just do as much as I can, which is most of it and it lasts an hour 3 times a week.

I'm taking Indomethacin and it helps if I don't eat too much bread and stay away from salt. I am working my self into the NSD. It's almost Atkins except you can have more fruit than on Atkins.

I sure hope I get full use of my arm back, but the head of the humerus shows softening and the tendons are still having problems, it has also affected my shoulder blade. I sure hope this all goes away when this flare is gone. The flare started last January when the chiro adjusted me and hurt my shoulder. I won't be having him work on me anymore after reading the info on Kickas.

Thanks for the info and the welcome.
Beverley

I finally gave up on trying to talk to my GP and called to talk to the radiologist that read my MRI. I asked him what I do next, he suggested Physical Therapy, not surgery. That was a bit confusing, so I questioned him more and we finally had a meeting of the minds. He wrote "diffuse degenerative spondyloarthropathy" on my report. Doing any search online that brings up ankylosing spondylitis, I even bought a new medical dictionary and that also refers to as. He said, "Holy [####]!!" "You've only got the type of arthritis people get with aging! I've got a good buddy with as and you don't have that!" I told him to change his use of terminology.

I suppose I should be embarrassed about this, but if there hadn't been this misunderstanding, I'd have never got to know any of you, and that would be a loss.

You all show a strength that is admirable. I'll pray that a cure will happen soon.

Beverley

Hi Bev and Welcome to KA.
I am not happy to hear that you have AS, but glad that you found us and have learned so much already. It was the same for me and many others here.
It sounds like you received a lot of good info already and I can't add too much to it other than echoing some of the others...stay away from a chiro! No Chiro in his right mind would touch a person with AS or any sort of spondylarthropathy. Physical therapy is your best bet, especially aqua therapy.
My opinion on college and whether or not you should continue...keep on going for as long as you can. We have others here who are in college and they are doing their best to give it all they can and not let this disease stop them. If someday it gets too bad that you can't continue, then look into online classes, like I did. But for now I think quitting is something you'll regret if you do.
Again, welcome to KA and I look forward to more of your post.
Welcome hugs to ya,
Lisa

Beverly, whatever they choose to name it, you have pain and whether they call it "diffuse degenerative spondyloarthropathy" or AS, as far as I'm concerned, you still found the right place.

Please, don't be embarrassed. As you say, you got to meet us which is a bonus however you look at it.

It would be nice, however, if someone on your caregiving team would give you an indication of exactly what diffuse degenerative spondyloarthropathy is. For your own ease of mind, if nothing else (and certainly not to satisfy our curiosity [hint, hint]).

Hugs,

Kat



"A life lived in fear is a life half lived." - Strictly Ballroom

Hi,

all this can be a shock, so I'll tell you what I think the radiologist is discussing!

SpA is SpA......

diffuse is the pattern the radiologist sees on the films which seems to me implies it's not a bright white host area and more widespread as in a light diffuser.

Degenerative means there are changes, and that's what arthritis is!

I can't find a condition such as diffuse degenerative SpA, these are typical words on a radiologists report, and it describes the pattern seen.

Lucky, the radiologist can spell SpA, most can't and most can't pick up the changes accurately in SpA.

Now SpA is the family of arthritis AS belongs to, so you are in the right place and are very welcome!

David






IBD=It's Been Dreadful

Hi Beverley,

I just wanted to point out to you that a Radiologist is not a doctor/specialist and is therefore unqualified to rule out such a diagnosis.

In reply to:

---

I finally gave up on trying to talk to my GP and called to talk to the radiologist that read my MRI. I asked him what I do next, he suggested Physical Therapy, not surgery. That was a bit confusing, so I questioned him more and we finally had a meeting of the minds. He wrote "diffuse degenerative spondyloarthropathy" on my report. Doing any search online that brings up ankylosing spondylitis, I even bought a new medical dictionary and that also refers to as. He said, "Holy [####]!!" "You've only got the type of arthritis people get with aging! I've got a good buddy with as and you don't have that!"

---

My Rheumatologist specifically said to me (about my report), that the radiologist wrote 'degenerative' changes, although they are in fact really 'inflammatory' changes. She said a radiologist's interpretation is based on imagery only, whereas a Rheumatologist's interpretation is based on the same imagery but in the context of a full clinical evaluation.

Also, his 'good buddy' is likely male, and the rate AS progresses in males can often be different from that seen in females, particularly in relation to age. Being referred to a Rheumatologist would still make alot of sense, in my opinion. Hey, and there's absolutely nothing to be embarrassed about, in looking after your own health!

Best of luck to you!

mig

Hi,

me again,

You've only got the type of arthritis people get with aging! I've got a good buddy with as and you don't have that!"

hummmm, SpA is known as a younger persons arthritis, diagnosed before 40, sometimes later.

Go see a rheummy, insist on it to be on the "safe side" I've had lots of non specialist opinions and most have been wrong or out of there league. As you've found out it can be quick and nasty.

I've also found rheummies interpret the scans more thoroughly than the radiographers, they know exactly what they are looking for. They also look at all black and white pictures.

David







IBD=It's Been Dreadful

You guys are great, and I'm not in nearly as much pain as you must be.

I called my insurance company to find out if I need a referral to see a specialist and I don't. I've got an appointment to see a Dermatologist on Wednesday the 10th at 9:30. I've got a new outbreak of "shingles." Maybe I can get whatever it is properly diagnosed.

Should I go in a full outbreak? I can eat corn and cheese and be a complete mess of 3 different skin conditions by Wednesday. Any suggestions? I've never been to a Dermatologist.

I am so glad I found this place, thank you all again.

Beverley