Happy Day. I need to be negative and vent. I found out that I have a new disease today called (AS) or Bamboo Spine. It’s officially know as Ankylosing spondylitis (AS). This is a rheumatic & autoimmune disease that causes arthritis of the spine and sacroiliac joints and can cause inflammation of the eyes, lungs, and heart valves. Spondylitis affects about 0.1 to 0.5% of the adult population. It varies from intermittent episodes of back pain that occur throughout life to a severe chronic disease that attacks the spine, peripheral joints and other body organs, resulting in severe joint and back stiffness, loss of motion and deformity as life progresses.
Why, why, why? It’s also genetic, so I had to call my parents. My mom can only tell me her grandmother has RA like I do, and her sister has Lupus. She says she will work on finding out more, but she has to write a letter to her sister, since she doesn’t have her phone number. OH, Mom! And of course, my absent father whom I hired a P.I. to find at age 25 and have only spoken to twice in the past 7 years did not answer his phone tonight. BLAH!!!!!!!!!
.gif)
I have it too! Sory about you diagnosis. I have been able to lead a fairly normal life. I will say a prayer. TV
Okay, you’ve filled your health issues quota for the rest of your life! I’m soooo sorry to hear about this. I’m sending you hugs, saying prayers, and lighting a candle for you.
OMG I dont want this. It hurts my back and I feel like I have a hard time breathing, it caused me severe anemia before I was diagnosed and I had to have my narrowed bile duct repaired. Im 34 and I feel 100. There was good news though….I dont have cancer and I have many more days with my family. Ok I feel better now
Rachel – I’m sorry to hear you have this. Thankfully this summer another doctor @ U-M ruled out this disease for me. Pain is the worst thing … I constantly lay on a heating pad and it does help!!!
I `ve had AS since about 13years old, but wasn’t diagnosed until i was about 21 years.
At the time not a lot of the doctors i saw were informed of the disease, so i was just given medication (in quantities like sweets) and told to go home.
Later in life i discovered probably the best place for AS sufferers, the Bath Hospital Rheumatic diseases England.
With the help of the team there life goes on.
chin up girl just 3 things to remember.
1. control the pain
2.Exercise
3.Enjoy life
The last may seem hard at times, but as i say, if you can do something about a problem do it, if you cant don’t worry
.
Yes A/S Ssuuuucks!! I’ve had this horrible infirmity 8 yrs as of April 26, 2010. But I’m sure you’ve done research by now on the subject and like what I’d find, everyone says the same thing. No answers.
Keeping your head up has become a joke to me. Its not advice to give someone who has been diagnosed with A/S. I will share advice on one thing only–exercise as much as possible—movement is hard but it helps–. That’s all I can share about what will help.
Meds?? I’ve been on every possible pain killer including OC and morphine. I’m off the harder stuff now because it seemed to make me worse. Enbrel injections help as most AI’s will a little. Its expensive but worth it. I have little to no movement of my head now and need surgery on my hips. Oh I also have R/A. Everyone will give you advice but remember its your body and future. I accept what it has done to me and what, in my personal life, it cost me. I’m about to be 35 in July. And after all I was concerned with when I found out I had this, I’ve realized something. Live life like its important and not something to be sorry about.
I hate hate hate A/S but I love me. JV
Jason – I saw a woman who had it last Tuesday in a store, and I was amazed she was buzzing around, volunteering and having fun at her age and advanced illness. She’s found the secret. My doctor “Changed her mind” about me having this, so I am glad as hell, although EDS isn’t exactly a fun disease to have, either. I’m sorry to hear you have this.
I was googling Ankylosing Spondylitis as I’m working with a client who has it and I felt compelled to write. I’m a medicial intuitive and know that there is a connection between negative thoughts and Auto Immune diseases.
I myself had one and it is now gone. I’ve also helped others get better from other auto immune diseases, when their Dr.’s said it was impossible. I’m glad they were wrong.
Beth, perhaps your intuition is off tonight… I actually don’t have AS, it was a misdiagnosis, one of many my old doctor made. Thankfully Mayo Clinic gave me the correct one – a rare genetic disease instead. Can’t really blame negative thoughts on Connective Tissue Disease proven by medicine’s finest doctors using DNA, now can we?
Also, I do know the secret to feeling better … its called ignoring the pain, don’t act sick, exercise every day and enjoy life even if you have Rheumatoid Arthritis and your neck, knees, and back hurt like hell. Now I’ve just saved everyone a few hundred bucks by not having to contact you for the same “postive” advice.
Thanks for trying to sell yourself on my blog. Next time just email me if you want to be reviewed or something. I really hate sneaky-ass self-serving comments like this.
Hi grirl from the ghetto !
sorry for my bad english!
I’m working for Occidental medecine, and this medecine put spells on patients in making diagnosis.
They want to put people in boxes, and statictics, and they try to heal the same, with stastistics and chemical weapons and sharp tools.
They don’t understand Human or nature and they try to cure it, as a dead flesh, or just genetical clock.
Instead trying to understand why a beautifulll biological machine starts to attack itself. They cut the organ which have a problem.
They burn, poison or cut.
Humans, animals and plants are a beautifull biological mechanics.
Sometimes the causes of illness of wealthy countries, are just vaccines, bad way of life, pollution, toxic food… and not genetical causes.
There are thousand of possibilities to heal each human.
And each human is different from others, with his own history, parents, way of life, genetics …
Occidental medecine could be beautifull and effficient, if scientist were more respectfull with life, and this sacred miracle.
So just believe in you, ask life to find solutions for your own problems, trust life, and life will send you answers by a lot of different.
xxx
Oh my god i just red the answer you made for beth.
WoooW, i should have read before …
But it’s funny that we are all sneaky-ass self-serving.
And it’s funny i was making search on google, on AS too for my job.
Hate make you feel better ?
My testimony even you don’t care : A DOCTOR cured my body with essential oils, magnet, and other stuffs, and as my body felt better, my thoughts change too.
So it’s normal you feel angry.
Body and mind are connected, and you cure one in curing the other.
Peace and love … Hope you will find your own solutions …
DO you still have the AS diagnosis? I have it too, and I am an AS Activist, running an awareness campaign right now, I would love for you to check it out at hopeandapples.com we have collected over 100 submissions so far from Spondylitis patients worldwide. Oh and according to the CDC and the SAA Spondytlitis and its related diseases is estimated to affect approx 33 million ppl worldwide, and 2.4 million in the US…so the estimates above are very low…it is said to afflict more ppl than MS< cystic fibrosis and Lou Gherigs disease combined….crazy huh? Anyway, I would love to talk to you more about AS, if you are interested, and you can check out my new blow, about AS…thanks, Kelly
Hurting but Hopeful – My doc is still not certain I have it, so ???
I got diagnosed in August 2011. Made sense as to all the injuries I had over the years (13 knee surgeries, one shoulder, numerous broken bones). Sucks, the more you find out the more frustrating it gets. I feel your pain! sorry.
Chris – Sorry to hear you have it.
My doctor changed her mind after I wrote this, but the MRI’s show evidence that I do have it, so who knows if I really do or not. I just try to ignore the pain.