Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group doubting myself

I'm newly dxed myself but the one thing that I regret was not searching for an answer sooner. My mother has SLE (systemic lupus) 2 sisters with Multiple Sclerosis but I remained relatively healthy and active until a massive amount of stress hit me all at once 2 yrs. ago. Although I had questioned my health on & off for many years, I would not have any tests done, even though I had doctors telling me I should be tested for lupus, MS, Rheumatoid & other things, because I had some silly little idea in my head that once I was dxed, I would give up or "buy into it" and I would go down faster. What a STUPID thing for me to do!!! Since I found this site, I have become more educated and I now realize that I had it completely backwards, I could have slowed the spinal fusion, the kidney damage, the wear & tear on my body from not sleeping right and I now realize that I have done my body a great injustice. Please don't do that to yourself and please don't worry about what everybody else thinks because they can't go on this journey with you anyway. One more thing, I breast fed all of my children and I am a big advocate of nursing because I see how it has benefited my children, so I agree with Tim on that one, please give yourself a break, you've got enough going on.

Ummkhalid,
Please don't listen to the people who are telling you to stop breastfeeding your baby.

You are right. Breastfeeding is your relaxation time, the time when you can just sit and hold your baby and relax. Lying down and nursing the baby is even better because, if you need to, you can sleep while the baby nurses.

Not only that, but breastfeeding your baby reduces the risk of the baby developing an autoimmune disease later in life. Though there are no guarantees, it is the one thing you can do to reduce the baby's risk of some day being in the same pain you are in right now.

Without a diagnosed disease on which to pin your pain, it's easy to start blaming yourself, but please know it is NOT your fault. There is something going on, though you aren't sure what it is yet.

If you want to talk a bit about breastfeeding, feel free to PM me. I was a breastfeeding advisor for 13 years and nursed all 4 of my own children.

Karen

Sorry to hear you are having such a rough time of it in dealing with the doctors and the pain. While I am HLA-B27 positive I heard for years it was back strain, and a combination of other things before I got to a doctor who knew what was going on. I have seen two rheumies since being diagnosed who said the same thing your doctor said about not seeing any damage in the xray. The last ortho specialist I saw a few years back said they could no longer do back surgery on any of the ruptured discs causing spinal cord compression because my bones would not support the screws or plates they would have to put in and would end up breaking free from the brittleness of the bones from the AS they seem in the mri's.

I think most of us have doubt ourselves at times before finding out the problem. Doctors who don't undrstand or no about the diseases causing pain tend to confuse us. Family members and friends don't know what to think because you appear normal on the outside. Then we get depressed not knowing what is wrong or what to do to solve the problem. Just hang in there and take a day at a time.

Brent

Hi. I am indeed sorry to hear about your condition. I can understand when you are in pain and a doctor tells you that every thing is normal.

The first doctor I had shown after suffering for almost a year, told me that my back was absolutely fine as there no signs of any damage on the x-ray report. My first HLA B-27 Test also showed a negative. A positive confirmation of HLA came only after the second doctor (who was very understanding and persistent) asked me to have another test in Hyderabad where I was enrolled in a college.

Doctors do get their stuff wrong once in a while. From what I have read, it appears that mainstream allopathy is yet to understand AS completely. That makes AS more unique.

So, be discplined and take care of your back even if there is no confirmed diagnosis.

best wishes

Saurabh

I am newly diagnosed and just learning all of this myself...

My rheumy said AS is really hard to diagnos because of the symptoms. He said he is 99.9% sure this is what I have but will have to follow me for a few years before he'll be 100% sure. Maybe when you get a doctor and/or rheumy you trust and they follow you for a while, you will get your answer.

I can understand your frustration with everyone not believing your pain since your test was negative. But like so many have said, you don't have to be positive to have AS.

Good luck and keep us posted!

agreed... I was initially suggested to have AS when I first broke with symptoms in the Navy at age 21, had hla positive.... next rheumatologist said "NO AS, only undifferentiated spondylarthropy (sp?) which could change to AS in the future....." that was 12 years ago & I didn't receive any real care, and worked myself to the bone because of similar attitudes & comments you are dealing with... now I have pain everywhere & crackling everywhere... and the docs don't seem to believe me now since I've never gone to complain before..... I'm sure I have damage. Whatever they diagnose... TAKE CARE OF YOURSELF and do what you can to keep the damage to a minimum if that's possible.....and to keep a history of your progress.

I think it's a big waiting game with getting an AS diagnosis.....


Definately breastfeed your baby. People would give me a hard time about co-sleeping with mine. They just didn't understand how difficult it was for me to sit & nurse in a chair & I'd be soooooo tired, I'd fall asleep & a chair is way to dangerous in my eyes. The bed is nice & comfy for both & you'll get a little much needed snooze in the process... hey, a win-win situation!! Formula is VERY BAD for babies, esp if there's a tendancy for autoimmune problems..... visit the weston a price foundation website about studies on how bad formula really is....

ok, sermon over..... this place will help you a lot too. .. . if anything, to talk to people who believe you & KNOW & have all levels of experience to help you on your journey....

take care!!

You've already been told this, but I'll say it again. A negative HLA-B27 test doesn't mean you do not have AS. It just means you tested negative on this particular blood test. Some people get false negative results on this test (I've never really understood why). Some people are simply B27 negative, but they still have AS. Some doctors are a little closed minded when it comes to this.

As for you haven't any damage showing on your x-rays because you're young - BALONEY!! There are folk here who had damage showing when they were younger than you. There are folk here who didn't have obvious damage until they were much older than you. The fact that you are a woman may be playing a huge role in this. There is a theory that women do not generally begin fusing until their child-bearing years are coming to an end. As I understand this theory, as the estrogen leaves us, the damage begins, because we need a free pelvic area to give birth. Many women do not have damage that is obvious on x-rays until they are in their late 30s.

I was 28 when I should have been diagnosed. I was 38 when I was finally diagnosed. Why? Because when I was 28 I had no damage evident on x-rays, but I did have it when I was 38.

It is entirely probable that you do have AS. One of the problems with AS is that most of the research has been done on men. Also, too many doctors do not keep up with the information, or they would know that AS presents very differently in women than it does in men. The current diagnostic criteria are outdated and there is an international panel of experts working on changing this so that people like you, who do not have damage showing on x-rays, can still be diagnosed.

I hope the Naprosyn helps you. I do know that many doctors seem to think this is the one to give people with AS (I have a vague memory of reading that somewhere, anyway). Please make sure you take it with food and with a full glass of water so you can protect your stomach.

Also, if you don't have any relief from it within a month, call your family doctor (if you can't get in to see your rheumy), get an appointment and ask for something different. It's all about trial and error. You'll find the thing that will help. It may be a combination of things (exercise, diet, pain killers, for example). Do your research so you can go into the appointments informed and asking intelligent questions. And then make your decision based on what's right for you.

Hugs,

I have every intention on continuing. I m very determined about this. The book i recommend to every new mom is Jack Newman's Guide to Breastfeeding. It made me realise how bad formula is for you and how wrong we have been taught that formula is a good alternative to breastmilk. whenever i go to a doctor for a medication, they say quit breastfeeding. they think the symptoms of the medication will be bad for the baby, but they don't realise that the symptoms from formula fed babies are much worse than the potential symptoms of medications.

i have gone through so many problems breastfeeding with both my kids so after going through what i did, i would not quit easily.

i had something called raynaud's phenomenon (in that area) is this common in people with AS? it seems to be a very rare thing because only one of the lactation consultants i went to had heard of it. I diagnosed myself from Jack Newman's book, and then confirmed it with the lactation consultant. It doesn't bother me now, but it's quite painful during pregnancy

yep i co-sleep too! man we have alot in common! your like a more experienced version of myself nurses and doctors and friends and family all gave me a hard time about co-sleeping. this is the only way i survive. i co-slept with both my kids.

alot of things i do are frowned upon in this society. like giving birth at home, childbirth sitting up instead of laying on the back, not vaccinating, co-sleeping, breastfeeding for 2 whole years, baby led weaning, dressing the babies lightly in the summer, etc. i'm very stubborn and i do what's right for me.

Hi Ummkhalid,

I'm currently in the same boat so I know how frustrating it can be. I just saw the rheumy for a follow up to my bloodwork and x-rays. He says I appear to be in excellent shape -- on paper! My HLA-B27 came out negative, my sed rate was normal, and whatever else he looked at (they took tubes and tubes of blood) was apparently fine too.

However, I had trouble following his review of my spine and need to ask him to give me a report so I can read it. Something about arthitis in my neck (which I was already aware of), a completely straight neck, lumbar arthitis with severe stenosis and arthritis in my chest. But, no SI findings.

My most troubling symptoms at the time are pain and swelling in my hands, pain and weakness in my thumbs, pain in my wrists, tenderness in my elbows and right hip, pain in my left achilles tendon, painful toes, balls of feet and plantar fascia. Also, I've had severe bouts of inflammation in my lower right ribcage for the past several years which is flaring up right now. And I have Crohn's.

The rheumy was so certain it was AS from my initial appt. that he already had his nurse researching how much my insurance pays for remicade.

And then ... my beautiful bloodwork! If only I felt half as healthy as my bloodwork indicates!

So now he's tentatively calling it wear and tear arthritis. I said, "I'm 48 years old, have never had an accident or injury, never played repetitive sports and I have wear and tear arthritis thoughout my spine and in my chest??!!" But he did say he's not convinced it's not inflammatory and wants to see me again in January.

So he put me on nsaids against my gastro's advice and said he'll take the heat for it. First tried Sulindac which helped a lot but after 4 days it was hurting my stomach so he switched me to Etodolac which doesn't seem to work as well but we'll see how it goes.

Anyway .... Sorry to be so long-winded. MY POINT IS: it is perfectly common for us to have normal bloodwork even with inflammation going on. According to the Spondylitis Association of America, less than 70% of people with AS have an elevated sed rate. And as others have said, you don't have to be HLA-B27 positive to have AS.

Lastly, even if it turns out not to be AS, it doesn't mean that you don't have something valid going on that you and your doctor need to get to the bottom of. I would trust your instincts though. It took me many years to get the Crohn's diagnosis and I just knew it wasn't IBS like my doctor kept saying. It wasn't until I had permanent scarring and strictures before they said, yeah, you have Crohn's.

Hang in there, Ummkhalid. TRUST YOURSELF! If your doctor isn't taking you seriously then find another one. My biggest mistake was not changing doctors sooner.

Please keep us posted on how it goes.

Kitty