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Re: Symptoms not found on most web sites #22860 11/18/05 05:12 PM
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Mary Beth Offline OP
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Whoops, almost forgot another sypmtom: increased lordosic (inward curving) of c-spine. Possibly caused by the constant spasm of my neck muscles, or from the inflammation of the joints.

The classic "increased kyphosis" is mentioned on all the sites, but is listed as "late-stage" when those of us with severe AS actually can get it early on, before there is fusing.

Oh, and some people also get a flattening of the curve of the lower back, but that did not happen to me.

Best,
MB


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Symptoms not found on most web sites #22861 11/18/05 07:20 PM
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Wormy Offline
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Char,
The way it was explained to me is that the fusion of AS starts with soft tissue inflammation around the spinal joints. Even when minimal, this inflammation can irritate the nerves. As these nerves run through the muscles, the muscles instinctively spasm to try and protect the nerve from the pain. Unforunately, this often snowballs. The spasm causes more irritation to the nerve which in turn creates more spasm.

I have tried trigger point injections but when done along my shoulders and into my neck, they actually created more pain and spasms and I got no relief - just more stiffness.

Next I tried Botox injections. Those created a 5 day nightmare of pain and no sleep, but in the end, did get me some relaxation - just not as much as I had hoped for. I also live out of a bottle of Zanaflex which does help some.

I hope you find a way to get the muscles to relax.


Keah
Re: Symptoms not found on most web sites #22862 11/18/05 09:03 PM
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Mary Beth Offline OP
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For me, Enbrel was the only thing to relieve the muscle spasms. Since the underlying cause is inflammation, the normal anti-spasm drugs and treatments (stretching, heat, yoga, etc) don't help much, I don't think.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Symptoms not found on most web sites #22863 11/18/05 09:39 PM
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Charrlygrl1 Offline
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Thanks Keah, for responding.
I'm so weird...lol...I never even felt the pain in my lower back until well after the problems I was having with my wrists.
I have been on Enbrel since about July of 2004 but the spasms have only started for me recently.
In my case, however, heat does seem to quiet them down. I use the heating pad at night and sometimes I use those Thermacare thingys at work during the day.
Isn't it strange how differently this disease presents itself from person to person?

One last thing for Mary Beth. I check this blog once in a while. It is written by a guy who is currently and permanently fused and basically faces the ground. It is sort of spiritually based rather than disease oriented-but I like it.
http://www.shrekk.blogspot.com/

Charlene

Re: Symptoms not found on most web sites #22864 11/19/05 07:25 AM
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I've had some back pain off and on since I was a teen. I attributed it to an injury that I was never diagnosed and treated for when I was a teenager. Skip forward about 20 years.

The first symptom that really began my downward spiral was both of my ankles and feet suddenly developed swelling. Not a little swelling but a lot. I had a hard time walking.

Wide spread pain in my joints, general achy all over feeling, like you have the flu. I realy felt terrible.

low grade fever

night sweats.

memory problems, inability to concentrate, felt like my brain was mush and in a fog

Developed inflamed arches in both feet. (sorry my memory is not good tonight and I can't remember the name of that)

Extreme fatique but wasn't sleeping well. I would wake up several times a night.

Sudden stiffness and pain in my neck which got progressively worse. I found out later, my neck was in the process of fusing.


Jan
Re: Symptoms not found on most web sites #22865 11/19/05 08:48 AM
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Thank you Mary Beth. Yes, lets revise the symptoms and characteristics of AS. There is much variation in how this disease presents.
It took about 3 yrs, but my son is finally diagnosed with AS. He presented differently also. While on Accutane for severe acne, he began to suffer excrutiating tailbone pain - to the point he could not walk. The Dermatologist agreed with me to stop Accutane and said the muscle aches and pains would go away in about 3 weeks. Didn't happen. He had pain in his neck also. For some reason, I had a six sense to take him to a Rheumatologist from the onset. The first Rheumy suggested AS, but said since the Xrays showed nothing and he didn't have the gene, he didnt have it. "Just take ibuprofen". The second Rheumatologist said we didn't need a diagnosis and to take ibuprofen. This was not ok with me. We then went to a teaching hospital (5 doctors) but no one could understand why he had so much pain when he sneezed, accompanied by rapid heart palpatations and chest pain. Then he would have severe long lasting thigh pain or arm pain. He always seem to have rib pain. He never had heal pain, Iritis, or joint pain. Now he's had diarrhea and vomiting for 8 months and absolutely no appetite. He is 18! I tried a new Rheumy for the 4th time. Bingo. He nailed it. He said my son is a "classic case" of AS (after viewing old and new xrays and LISTENING) and he asked if we would accompany him to a medical conference where he wanted to test Rheumatolgists by presenting my son and see if anyone could correctly diagnose him. He wants to teach other doctors what to look for. I think/KNOW I have found us a good Rheumy. He's ordered a colonoscopy, bone density test for osteoporosis,more blood work and a TB test. He's even considering the possibility that the acne is connected to the AS. The key to this disease is finding a great Rheumatologist and not giving up until you do. My son hurts every day and his spine has begun to fuse. But my son's treatment is beginning next week - methotrexsate, enbrel, folic acid and hopefully that will help.
Mom Advocate.

Re: Symptoms not found on most web sites #22866 11/19/05 08:58 AM
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SarahC Offline
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To add on Jerry's behalf

1. Loss of or straightening of the curve of the lower spine (this was noticed many years before dx.

2. Extreme foot pain-dxd with achilles tendonitis, plantar fasciitis, not responsive to treatment by podiatrist. Also complained that all the tarsals and metatarsal felt broken (still does-oops)

3. The never ending muscle spasm (knots) in between his spine and shoulder blades bilaterally-more like long knots that connect from the spine to the blades.

4. Severe "growing pains"

Jerry had alot of swelling in his ankles-he was taking indocin-his podiatrist told him that sometimes nsaids will cause rebound swelling (like rebound headaches-in my case). When he went off indocin, the swelling did go away.

I think that is all I have, and thanks for the opportunity to share.

Sarah


Re: Symptoms not found on most web sites #22867 11/19/05 01:47 PM
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I've mentioned many times that I had lumbar surgery in 1977 or 78. I had back pain off and on and some falls (tailbone has been broken twice, nothing they could do so they said). I feel like the lamanectomy was useless. But then one day I just noticed that it was like I had no lower back, still does. Nothing from my waist down. it's like it's not there. I began getting the knots around my thoracic spine and shoulder blades and they came hard and fast. I slept in a recliner for over two years and worked every day ten twelve hours many days, and within 18 months my neck was totally flexed forward, the kyphosis comes actually not from the cervical spine but the thoracic spine. Went to pulmonologist yesterday, two hours in there while they did all this testing. Conclusion was lungs are slightly enlarged from lack of rib expansion and athsma, no emphysema at all but bronchial spasms from the AS and am beginning to get squeezed from the ribcage. In all honesty I could have lived with what back pain I had with a little pain medication, but nothing, not any medicine helped the neck pain, still doesn't really, except the enbrel and I will get to go back on it next week. My ROM was pretty much there in my neck one day, and all of a sudden, it's gone. That fast, or so it seemed. My eyes have been a big problem, hard to tell when they are just hurting me and when it's iritis because I have had like 8 eye surgeries all because of mistakes made during the repair of detached retinas in both eyes. Guess I will have that forever, but at least thankfully, I can still see.Pain and numbness in my hands are usually my alarm clock along with being blind as a bat for the first five or ten minutes. I had the burning stinging of the feet, surgery for ingrown toenails, and so many other things, I could create a catalog. I am amazed and most thankful that I can still live independently, drive, and pretty much do anything I want except reach, oh how I wish I could reach higher places that my grandsons can do so easily.


Johnnie
I have AS. AS does not have me!
Re: Symptoms not found on most web sites #22868 11/19/05 02:54 PM
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Connie Offline
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Here were my early symptoms of AS...

1)Severe TMJ syndrome beginning when I was a child, and operated on FOUR times by age 16

2)Back pain beginning at age 13 or 14, which had then made my family practice doc have my parents put me in a back brace. I was already 5'11" and they felt that maybe I slouched a lot because I was so tall.

3) Extremely hard time with pregnancies, had small babies, and feelings of being stabbed in the kidneys, was beginning to fuse by my last pregnancy

4)When working a job which required me to be on my feet all day, developed sharp shooting pain down both legs, couldn't bend over at the waist well,began having popping and cracking in my hips and knees

5) Could not lie flat on my back to sleep, couldn't lie on my stomach for more than two or three minutes, could not get up off the floor unassisted

6) FINALLY DX'd after falling down and breaking a fuse which needed to be surgically fixed. Just prior to this, was experiencing having my hands going numb, and knotting/burning in between my shoulder blades

7) Having a hard time straightening up after sitting for more than about a half hour, severe stiffness upon waking up, loss of balance from being stiff, pain in the soles/arches of both feet, walking funny

Enbrel made me normal again almost 100%. Diagnosed with cancer 2004, and hoping they can find something which works like Enbrel which doesn't have a cancer risk. Do not need to have that come back!




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Connie
Re: Symptoms not found on most web sites #22869 11/19/05 03:14 PM
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Sorry to hear about the pain and suffering of so many...but gratified to see symptoms I have and never see on any list (and which usually get a glazed nod from the docs)...I too have chronic shin pain and slight sore throat/fever with the onset of flares. Plus I get a hyper flare when I'm fighting a cold/virus. Someone from SAA should document these symptoms in a database somewhere.


"Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out." Vaclav Havel (Czech playwright and former President)
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