Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newbie in town

Well, I'd like to say "hello" to you all. I just joined today. Without further preamble, I will make my first post...

I was diagnosed with AS about a year ago, but I still am not even sure I have it. I have had severe neck pain and stiffness for many years, but I figured it was the result of an auto accident I had over 20 years ago.

Meanwhile, I have total fusing of C1-C6 (the top cervical vertebrae? please correct me if I am using the wrong terminology) with only C7 not fused to the rest. My neck and shoulders are in constant pain/spasm and I have frequent headaches.

My Orthopedic surgeon is recommending PENS therapy. Has anyone heard of this or used it, and to what effect?

I must also say (well, "must" is not really the case, but it's probably a good idea) that I have the following things going on, as well:

• Obstructive Sleep Apnea (under treatment)
• Paroxysmal Atrial Fibrillation (taking medication, including Coumadin)
• Heel Spurs (three of them)
• Diabetes II (recently diagnosed, taking meds and trying to modify my diet)
• Some sort of extra tissue (diagnosed as benign about 20 years ago) in my right hip joint, but which gives me pain on occasion
• Recently had Carpal-Tunnel release surgery (both wrists)

Many of these may be weight-related (I could stand to lose a goodly amount of it), but as I have been reading up on AS, I am wondering if any of them could be AS-related instead.

Anyway, because of the coumadin, I can't take aspirin, or NSAIDS. Codeine makes me sick and acetaminophen doesn't do diddly. So I was just wondering if PENS might help, at least with the pain. I'm just hoping my insurance will OK the therapy, so I can at least find out for myself.

I've rambled a bit, and probably overstayed my welcome, but I hope I can find a few friends around here, and I look forward to meeting you, whoever you may be.



It only hurts when I laugh.
Too bad I find life so funny...

Hi Andy,

Welcome to KickAS!!! Great site on the web.

What were some of the considerations that led to the diagnosis by the doctor? Did they perform a blood test? Most with AS are HLA-B27 positive (genetic marker), but if you are negative, it does not mean you do not have AS.... and actually if you test positve you do not always have AS.

A few other symptoms are family history and joint stiffness (typically worst in the morning and improves throughout the day). The fusion is symptomatic to AS.... luckily I have yet to experience.

Are you seeing a rheumatologist?

Can not help you with the PENS question, I sure someone else will be along to answer that question.

Take care,

Tim

A pessimist sees the difficulty in every opportunity, an optimist sees the opportunity in every difficulty. - Winston Churchhill

Drewster,
Welcome to Kick A.S.. Glad you found us. We all understand each other here. Sometimes we laugh, we cry and we come here to vent. I am looking forward to getting to know you better. Sorry I do not know what PENS is.
Welcome, Yoly (*^*)

Hi there and welcome to Kickas. We aim to please :+)

About the PENS..I keep reading penis by mistake and it throws me right off...really though could that possibly be something to do with Pamidronate infusions? Just a hunch. One of our members has had great luck with that and he pops in from time to time.

Sure does sound like you are the lucky winner of an AS diagnosis to me! I know....my attempt at humour but it is still good to know what you are facing. Please come back often..you will definitely like it here.

Els

"Music Is Healing" And "SOOTHES THE SOUL"

Wow! I didn't expect any answers so soon. I've just been poking around the various threads.

Never been to a Rheumatologist (don't even know what that is!). Is this a good idea? I go to so many different doctors as it is (cardio, endocrine, orthopedic, gp) that I get dizzy!

I have never had a blood test for that particular gene(?). Would a GP perform that, or would I have to go to a specialist?

I have no problem with humor. Well, my wife would tell you that I make fun of everything, so maybe I do have a problem... But if I couldn't laugh every so often, I'd go nuts!!!

Thanks, and keep 'em coming!


It only hurts when I laugh.
Too bad I find life so funny...

Hello,

Welcome to the forum--hope you find all the support you need here.

A rheumatologist is the specialist who treats arthritis. If you do in fact have AS, then yes, you definitely should add one to the list of specialists you already have. Believe me, I know exactly what you mean about having so many specialists already--my personal collection is a primary care, rheumatologist, cardiologist, pulmonologist, opthomalogist, two different orthopedic surgeons, a gastroenterologist, and a partridge in a pear tree. Far too many "-ists" for someone yet to see the other side of 40, if you ask me.

When I first read your question about PENS therapy, I thought maybe your doctor said TENS therapy and you might have misheard him/her. A quick Google search, however, reveals that PENS therapy is used and that it is a kissing cousin of TENS therapy. Both involve electrical stimulus of sore muscles and tissue, but if you would like to read more and understand how the two are related and what might be involved in both treatments, you might want to check out this article I found called "TENS vs. PENS vs. Exercise Therapy for Low Back Pain" (I know you said your pain was in the cervical area, but thought this might still have good info in it):

http://www.aafp.org/afp/990901ap/tips/13.html

Good luck, and again, welcome to the forum!

Brad
wolverinefan

Edited by Michelle in Md on 04/30/03 10:12 PM (server time).

Andy:

I was interested in your post because I suffered from obstructive sleep apnea and ended up having surgery to correct it back in January 2000. It basically cured the problem for me and now my wife is able to sleep like a baby. I keep saying that she received most of the benefit of the surgery.

The other thing is I believe you're referring to a TENS unit, not PENS. TENS is a form of electrical stimulation that is supposed to block the normal transmission of pain. I've never tried it but have spoken to other AS patients who have benefitted from it. That's it for now. Welcome aboard.

Tom

Hey! Welcome to the site.....

I'm sorry, I don't know anything about PENS either (but at least I read it right Els ).

Just wanted to say welcome..... feel free to post anything.... this is a great supportive group and we can all attest to that!

Take care....... I look forward to hearing from you often.

Maxine

May the roof above us never fall in, and the many friends gathered below it never fall out. - Irish Blessing

Welcome to kickas.There a wealth of help here.
Bradford

To the world you may be one person,but,to one person you may be the world.

Wow again!

Just to clarify, I know what TENS is, I've owned my own unit for a few years and use it frequently. PENS is the Percutaneuous version, and uses acupuncture(-like) needles for a deeper stimulation than TENS. That's about as much as I know about it, from my own web researches.

So, I ask again, what type of doctor would be able to test for the genetic "marker" for AS?


It only hurts when I laugh.
Too bad I find life so funny...