Welcome to EmpowHer, and thank you so much for writing. I'm so very sorry that you have had these experiences, and especially that you have been dealing with these issues since you were 19.
Don't give up. At EmpowHer we hear a lot of stories from women just like you. In fact, our founder, Michelle King Robson, had a story very much like yours -- she received treatments that didn't help her, and had difficulty finding doctors who could or would help her. That's why she started this site, so women could share information and help one another find answers.
I am not completely sure what AS means. Do you mean ankylosing spondylitis?
I am going to assume you mean ankylosing spondylitis, since you mention the HLA-B27 gene. 90 percent of the population of people who have this illness have this gene, which is why doctors may be ruling it out for you. But it is possible to have ankylosing spondylitis without having that gene. Also, more men than women get the disease. I'm not sure why they would say you are too young, since even the Mayo Clinic website says the onset is usually between adolescence and age 40.
Were you also tested for the HLA-DR4 gene, which has been associated with RA?
Where do you live in Florida? (Just city or zip code will work)
How long ago were your last bone scans and X-rays?
Have these tests been done by a rheumatologist, or your regular doctors?
Do you or have you had anemia? It often results from the chronic inflammation that ankylosing spondylitis patients experience.
Here is a link the Mayo Clinic's page on this. Be sure to also click on the links down the left, which lead to more information on treatments and drugs, complications, risk factors and so on:
Have you found the website for the Spondylitis Association of America? It is the largest non-profit in the country fighting spondylitis, and their site is full of information and resources:
http://www.spondylitis.org/
Much of the information is available to everyone. But if you can join the SAA as a member, which costs $35, you get access to their recommended rheumatologist directory, which might help you find a doctor more experienced with your condition.
Here's their page that talks about this directory:
Anon, please take a look at these links and see if they are of any help to you. If you can answer the questions I have above, especially about where you are located, we may be able to help you further. And in the meantime, I'll make sure Michelle sees your question. She cares very much about women going through situations like yours.
Your girls need you, and they need you to be the best you can be. Believe me, they don't care if you are in a wheelchair or walking upright as long as you are here and loving them. But we need to help you find some help and treatment so you don't feel so desperate. Please write back to us and let's see what else we might be able to find for you.
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Anon,
Welcome to EmpowHer, and thank you so much for writing. I'm so very sorry that you have had these experiences, and especially that you have been dealing with these issues since you were 19.
Don't give up. At EmpowHer we hear a lot of stories from women just like you. In fact, our founder, Michelle King Robson, had a story very much like yours -- she received treatments that didn't help her, and had difficulty finding doctors who could or would help her. That's why she started this site, so women could share information and help one another find answers.
I am not completely sure what AS means. Do you mean ankylosing spondylitis?
I am going to assume you mean ankylosing spondylitis, since you mention the HLA-B27 gene. 90 percent of the population of people who have this illness have this gene, which is why doctors may be ruling it out for you. But it is possible to have ankylosing spondylitis without having that gene. Also, more men than women get the disease. I'm not sure why they would say you are too young, since even the Mayo Clinic website says the onset is usually between adolescence and age 40.
Were you also tested for the HLA-DR4 gene, which has been associated with RA?
Where do you live in Florida? (Just city or zip code will work)
How long ago were your last bone scans and X-rays?
Have these tests been done by a rheumatologist, or your regular doctors?
Do you or have you had anemia? It often results from the chronic inflammation that ankylosing spondylitis patients experience.
Here is a link the Mayo Clinic's page on this. Be sure to also click on the links down the left, which lead to more information on treatments and drugs, complications, risk factors and so on:
http://www.mayoclinic.com/health/ankylosing-spondylitis/DS00483/DSECTION=tests-and-diagnosis
Have you found the website for the Spondylitis Association of America? It is the largest non-profit in the country fighting spondylitis, and their site is full of information and resources:
http://www.spondylitis.org/
Much of the information is available to everyone. But if you can join the SAA as a member, which costs $35, you get access to their recommended rheumatologist directory, which might help you find a doctor more experienced with your condition.
Here's their page that talks about this directory:
http://www.spondylitis.org/patient_resources/rheumatologist.aspx?PgSrch=doctors
Are you near Clearwater, Deland or Miami? There are ASS support groups there:
http://www.spondylitis.org/patient_resources/support_groups.aspx
Anon, please take a look at these links and see if they are of any help to you. If you can answer the questions I have above, especially about where you are located, we may be able to help you further. And in the meantime, I'll make sure Michelle sees your question. She cares very much about women going through situations like yours.
Your girls need you, and they need you to be the best you can be. Believe me, they don't care if you are in a wheelchair or walking upright as long as you are here and loving them. But we need to help you find some help and treatment so you don't feel so desperate. Please write back to us and let's see what else we might be able to find for you.
March 26, 2010 - 9:01amThis Comment
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