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#459867 01/10/12 03:13 AM
Joined: Jan 2012
Posts: 14
K
KimD592 Offline OP
New_Member
OP Offline
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K
Joined: Jan 2012
Posts: 14
Hi everyone! My name is Kim and I am 29, almost 30, years old. I am the proud mama of 3 beautiful children, ages 10, 3, and 2. I am married and am a telephone triage nurse for a local hospital.

I was just officially diagnosed with AS this past November, but I had a neurosurgeon first mention it to me back in May. I have suffered with mysterious symptoms since I was a teenager, but it all came to a head after my son was born 10 years ago. In Oct 2010, I injured my back lifting my middle child. I went through all of the standard treatments for a back injury...pain meds, muscle relaxants, steroid bursts, PT, injections, etc, but nothing seemed to help. In May 2011 I went to see a neurosurgeon and was told I needed surgery. I had and MRI and CT Myelogram done prior to my appt, both of which showed multiple herniations in my t-spine. I asked him what would cause so many herniations in someone my age, and that is when he first mentioned AS. I didn't think much of it and really didn't question it. I ended up going for a second opinion and having surgery with the second doctor in July.

After the surgery, my back pain increased tenfold. Come September, my neuro was starting to recommend another surgery, but I wanted to get another opinion. I had remembered what the first neurosurgeon had said to me, and I decided to read about AS. I couldn't believe what I was reading. After searching for answers for so many years, it was right here in front of me. I had, at one point, seen a rheumatologist and was told it was fibromyalgia. I went back to another doctor in the same practice a number of years later, and she did not think it was fibro, but she wasn't sure what it was. So anyway, I decided to go back to the other neurosurgeon who had first mentioned AS to me. This time he said do NOT have another surgery. He felt my problems stemmed from the ligaments, which stemmed from AS, and that another surgery would only lead to the same problems. He felt the weakened ligaments were the reason I have so many herniations in my t-spine. He recommended more PT (which I have already completed) and possibly a facet block. There was also multi-level facet disease and DDD found on my MRI's of the thoracic and lumbar spine.

After again talking to the neurosurgeon, I decided to see a rheumatologist. I had mentioned all of this to the surgeon who performed my surgery, and he flat out told me that he didn't think I had AS (because I don't have the "bamboo spine") and that it wasn't worth testing for, because there is no treatment. In September I met with the rheumy who ran all of the typical bloodwork, including HLA B27. I should also mention that in August my ESR and CRP were very high. I have had times in the past where my ESR has been elevated as well. This time, all of my bloodwork came back normal except it was found that I am HLA B27+. My rheumy sent me for x-rays of my SI joints, which came back negative. She mentioned doing an MRI, but she wanted to wait until we had my back issues figured out. Despite my symptoms and the presence of the gene, she still was not convinced about it being AS.

In November my insurance changed, and she was no longer covered under my new insurance, so I had to switch. I met with the new rheumy on November 9th. He did a very thorough history and physical. He asked about family history of Crohn's and Psoriasis, both of which are present in my family. He asked about symptoms and went over lab results. He seemed pretty confident about the diagnosis at that point. He sent me for an MRI of my SI joints, because he said the x-rays typically take at least 8 to 10 years to show damage. Sure enough, my MRI showed early sacroiliitis. So that along with being HLA B27+, family history, and my symptoms all bought me my AS diagnosis.

Anyway, I have been on Prednisone for about 2 months now and am currently on 10 mg/day. I had tried to taper off and was down to 2.5 mg, but it obviously did not go very well. I go back to the rheumy on Friday, and I believe he wants to start me on either Simponi or Enbrel. I spoke with the NP today, and she said it may take a week or two to get the pre-auth from my insurance company. For now, I'll continue on the Prednisone. I am also on Diclofenac, as well as a host of other meds.

So, that is my story. I can also be found on the SAA forums, and I believe I recognize some of the names from there as well.


Kim (30) - Dx'd with AS - Nov. 2011. (HLA B27+, sacroiliitis on MRI, peripheral and axial symptoms, enthesitis, and iritis)

Current treatment: Too many medications to mention. Now trying going a more natural route...NSD and exercise!
KimD592 #459873 01/10/12 03:27 AM
Joined: Nov 2011
Posts: 256
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
Joined: Nov 2011
Posts: 256
Welcome to KickAS Kim, you've landed in a very helpful place!


Iritis first diagnosed in 1991, presently recurrent and steroid resistant.
Tested HLA B27 positive in 1996.
AS diagnosed October of 2011.

Putting most of my eggs in the NSD and exercise basket, using only TENS, massage, heat and ice, and NSAIDS (sparingly) for pain. Drops for iritis as flare necessitates. Looking back I feel I would have been diagnosed with AS years ago, if I had found a rheumy earlier than 2011.
KimD592 #459879 01/10/12 05:35 AM
Joined: Oct 2010
Posts: 253
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
Joined: Oct 2010
Posts: 253
Good luck. Biologics are a God send. Seriously don't be afraid to try them. Hopefully with you needing such a low dose of pred you will be able to cut down to 2.5 or none with the biologics. The less you take the better.


HLAB27+ A.S for 2 year. Humira, Enbrel, Simponi all tried now moving on to Remicade. Meth, sulfa, tramadol, etc...
KimD592 #459913 01/10/12 06:42 PM
Joined: Jan 2008
Posts: 21,346
Likes: 1
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
Likes: 1
just wanted to say hello, and glad you have a dx and treatment plan smile



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
KimD592 #459948 01/11/12 12:19 AM
Joined: Nov 2003
Posts: 8,190
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2003
Posts: 8,190
Welcome glad to have you..just so sorry you have been thru so much..I cant imagine having back surgery and then have more pain after.

Sounds like the Dr is on the right track I am on Remicade right now and it has done wonders for my quality of life hopefully it will do the same for you.

Hugs!


Speak kindly, Live simply, Care deeply, Love generously, and BLAH, HA, HA, LOUDLY! every chance you get.

KimD592 #459950 01/11/12 12:36 AM
Joined: Nov 2011
Posts: 97
J
Apprentice_AS_Kicker
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Apprentice_AS_Kicker
J
Joined: Nov 2011
Posts: 97
Welcome Kim, Sorry to hear of your diagnosis. Lots of wonderful knowledgable people here. Good Luck! smile


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