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looking for help #91561
11/04/05 01:47 AM
11/04/05 01:47 AM
Joined: Nov 2005
Posts: 13
Alabama
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Murphy Offline OP
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Murphy  Offline OP
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Joined: Nov 2005
Posts: 13
Alabama
My 20 year old son was diagnosed with AS 5 years ago. Within the last year his pain has really progressed. He started weekly Enbrel injections last April and that seem to help for a while. Within the last month his pain has gotten much, much worse. I am not pleased with his doctor and he has an appointment at UAB (Birmingham,Al) next month. Does anyone know of a physician who specializes in AS or even a clinic? It doesn't matter where it is. Surely there is someone somewhere!!! Thanks

Re: looking for help #91562
11/04/05 01:59 AM
11/04/05 01:59 AM
Joined: Oct 2005
Posts: 671
NY
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chattermouth73 Offline
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chattermouth73  Offline
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Joined: Oct 2005
Posts: 671
NY
Hi, I have a 12 yr. old son that was diagnosed with AS a month and a half ago. So I dont have all of the answers. I was inspired and found hope in one mans words who is now 28 but was diagnosed at 12 he told me to make sure my son stays active and to get into a daily routine of excersize.
He also said to change my sons diet. stay away from junk food and stick to healthy food. and no matter how good he feels stay on his meds. My son is on Indocin. I know how hard it is to watch your own child going through this. Dont let him give into this disease, It seems like it would be easy to do but no matter how bad he feels he has to fight it.
I am unsure of a dr. Im still trying to find a good Ped. Rhumatoligist. Its tough.
Post your message on the General Forum there is alot more traffic there and hopefuly someone will be able to give you better advice.
I wish you the best of luck, You and your son will get through this! Keep Fighting


Me and my kids, Anthony is 14 diagnosed with AS but now docs are undecided as to what he has!
Re: looking for help #91563
11/15/05 07:29 AM
11/15/05 07:29 AM
Joined: Jan 2005
Posts: 20
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Mom Advocate Offline
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Mom Advocate  Offline
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Joined: Jan 2005
Posts: 20
Murphy,
My son, 18, also has AS. It took about 6 doctors in 3 counties to finally find a Rheumatologist that said "this is a classic case of AS". He is starting my son on Enbrel, methotrexate, and folic acid. He also ordered a colonoscopy and had a bone density test done, plus more blood work and xrays. It took 4 years to find this doctor. His name is Dr. Neuwelt in San Leandro, California. His # is 510 357-1303. He is a blessing to us. He is proactive. He has asked us to go to a medical conference because my son is such a classic case. He wants to teach other Rhuematologists how to recognize early the symtoms of AS. My son seems to have every complication of AS unfortunately. How long has your child been on Enbrel? Do you know why it quit working?

Re: looking for help #91564
01/15/06 01:11 AM
01/15/06 01:11 AM
Joined: Oct 2005
Posts: 616
Atlanta, Ga
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mtsargent Offline
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mtsargent  Offline
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Joined: Oct 2005
Posts: 616
Atlanta, Ga
Mom Advocate, can you tell me some of the early symptoms of AS?. I have been diagnosed as having AS but I am old (58) and probably went 20-30 years before being diagnosed (another story).

The thing is, now that I am becoming more "educated" I am becoming concerned that my youngest daughter (19) also has AS. She has been "sickly" for years. She sleeps 10-12 hours a night but not well.

Three weeks ago she went to a 2 week horse show in Tampa, started having lower back pain during the first week which got so bad along with shoulder and neck pain that she was unable to show the second week. I had to fly down last Sunday to drive her and her horse home (8 hrs).

She also has started to show a curvature at the top of her spine. I am trying to get her in to see a rheumy but do you think I am being over reactive or "projecting". I don't want her to make the mistake that I have in being in "denial" for so long that I had significant hip and spinal damage before I started treatment.
mike


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