Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group one thing I haven't tried

Thanks for the information. It definitely points away from the effect I am looking for from pred.

I do have thyroid disease, but it is treated and well managed, so I doubt that it is the source of my problems. As long as a person keeps their thyroid levels within range, the symptoms or hypo- and hyperthyroidism won't occur.

Karen

...but didn't the Mayo Docs tell you that they thought your thyroid levels were too high? Surprising that they did not suggest seeing an endocrinologist.

Yes, they are a bit high right now. We tweaked the dose down three weeks before Mayo. It takes 6-12 weeks for a dose change to fully take effect, so we are waiting before we make another change. We've been checking my levels every three months because I haven't been very stable lately.

Karen

Karen,
What you are describing, I have thought of as AS drowning.
In the E.R. I owudl tell the Dr. that pain and stiffness all over my body seems top be stealing my life and my soul.
3 fused back verte. but other wise lots of many kinds of arthritis.... When I am in your situation, I used to use whiskey, get buzzed and then work out: walk. climb the canyon or bicyle. Only you know what is best for you. But I always feel better when i don't eat, and then just eat apples.
You are in my thoughts and prayers.

Karen,
thanks for all of your Mayo posts--what a great service that was for so many of us to read. Thanks for sharing.

I am sure you have probably gone down this path, and forgive me if you have posted about it before, but the thing that sticks out for me is that you say you don't have pain, but keep getting injured. Have you looked at and researched aspects of the body's healing processes? Maybe your "issue" lies somewhere in there--maybe something is breaking down in your body's injury response??
??hope *something* comes to light for you soon...or this "phase" just finishes!! (wouldn't that be nice?!)

Yes, I keep wondering if that's where my issue lies. I've researched and read and asked doctors and haven't been able to come up with anything very likely.

My cholesterol levels are quite low. Low cholesterol levels are associated with inflammation of ligaments and tendons, low vitamin D levels and depression, all of which I have. I mentioned this to the rhuemy at Mayo, referring to it as "one of my wacky hypotheses" and she said she was going to research it for me and let me know if she found anything.

Other than that, I haven't been able to come up with any good theories.

Karen

I an bemused by some of this,

Do doctors there generally prescribe by saying,

'Oh, I will give you this but you don't have to take it'

or

'I will give you this I think it might work'

It has to be said that such a 'slap-dash' way of prescribing hardly builds confidence.

And I am further confused, that a doctor prescribes this med for your wrist problems, you don't take it but then ask unqualified people here, whether they think asking the doctor for the med you already have but haven't taken, will do you any good for the things it was originally prescribed for.....??

Was the prescribing doctors word not good enough, are we here more able to decide upon your care?


Not wishing to ruffle feathers but sorry, I just dont understand this logic. Clearly I have missed some salient facts along the way, so my apologoes in advance.

Doctors may not be perfect, but they are the best choice we have. Perhaps following their prescribing regime may be the best policy.

Yes, that is actually how many doctors here do things. They tend to offer options, describe risks and benefits and let the patient make the choice.

In this case, the doctor offered me the option of taking the pred. She very clearly said to me, "You can try this if you want to. It might help clear up some of what you have. On the other hand, the medication is not essential so you can make the choice." I chose not to.

In fact, I have more confidence in a doctor who doesn't claim to necessarily know what is best for me. My knowledge of my body, my values and my lifestyle choices all come into play when I choose a treatment regimen. No doctor can make decisions for me.Nor can any doctor offer me asurances that any treatment will prove beneficial to me and not harm me. There are no such guarantees. Because doctors have a great deal of training and experience, I listen carefully to what they have to recommend and why they recommend it, but generally it's a matter of balancing risks and benefits. In the end, that's my responsibility, not the doctor's.

The people here aren't "unqualified". There is a wealth of experience here to tap into and I'm interested in hearing about that experience as part of the input into my decision making. The people at kickas are not doctors and they do not offer to me something which is the same as what a doctor would offer or replaces what a doctor would offer. What the people at kickas offer is something different, personal experience. The experience of others with a particular treatment regimen is a piece of information I choose to use in my medical decision making along with other information such as that given to me by doctors. I don't necessarily give all of the information I'm given the same weight, but together all of the pieces form a mosaic which allows me to use all of the information at my disposal to come to the decision which I believe is best for me.

And that decision is mine to make, not the doctor's. I repeat, I take a doctor's recommendations very seriously, but the responsibility for decision making is mine alone and to make good decisions, I use all of the information at my disposal.

So in fact, I did follow the doctor's prescribing regime which was, "You can try this if you want to."

Karen

Karen,
I have met some GPs and the Pain clinic Dr. that did the same. Say what they think, pose the postion (s) and then ask if i want to go ahead. Sometimes it was because I did not have insurance. Occasionally I have said, that I have tired some things.. then they cogitated for a bit. Like you I find it refreshing that they give options.
I can't imagine not having pain. But then again, Karen, you make this site interesting. We love you and pray that you get some good results soon.
I have terrilbe pain, but not really hurting my body..

Options are not the same as prescribing a medicine that you need not take. Must be a waste of money for a start. If it is an option then shouldn't it be made before the prescription is filled?