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

Firstly I would like to say that all the people with no firm Diagnoses have my sympathy and I do understand what it feels like not to know.My diagnoses took 23 years and I suffered greatly in that time with pain and worry like many others.Those of you who are newly diagnosed with AS are going through a lot of pain stiffness and worry at the moment I know and you think its the end of your life.Well let me try and reassure you its not things will get better pain will get less and you will be able to cope better than you might think.Although my pain has never gone completely mainly because of the damage I have because in the early years there wasn't the drugs or knowledge there is now.Whatever route you may take through this whether it be drug or diet or exercise life will improve.You hopefully will learn to live with it as I and many others have Despite severe Kyphosis fusion and pain I am happy with my life as it is. To me is not something I have it is part of me for life and I accept that and work with it to be as normal as possible.

Prior to Diagnoses although I had a great deal of pain a lot of the time I simply got on with my life in my early years from about 7 till I was 15 it was pretty crap being in pain having surgery taking drugs and not knowing why I wasn't like my mates being able to run round climb trees (Although I did still do it)without being in pain and feeling stiff having time of school because of feeling so ill and Doctors not knowing why.
But when I reached 15 and started working and having money to enjoy I wasn't going to let my life be ruined by pain my life from 15 to 30 was fantastic I did all I wanted Motorcycles,girls,loads of beer concerts loads of good friends who accepted me even though I was starting to get Kyphosis and in pain I road 100s of miles and had all sorts of fun some best not mentioned on here.What I'm saying is despite having no Diagnoses and knowing something serious was wrong I had a great life.My diagnoses came when I was 30 although a shock at the time I already had bad Kyphosis and fusing was well under way.Even since then I have had a happy life and continue to do so yes I get fed up at times with being stiff and hurting I wouldn't be normal if I didn't but I have too much happiness with my Family to let it get me down .
To the people with no firm diagnoses yet I would say live your life its very short and searching through the net or books for a self diagnoses is not a good idea many diseases have very similar symptoms and cannot be diagnosed simply by reading it.And self diagnosis can be a very dangerous thing I know not all Doctors are perfect and they can make mistakes but if you have no evidence of fusion or inflammation on scans your bloods are normal or near normal then there is a good chance its not AS trust me if you haven't got it you don't want it.That's not to say you don't have something wrong and your not in pain and worried.Remember you have to live life with it whether you know or not and you are affecting the life of those around you as well.
As for looking for understanding from family and friends there's a good chance you wont find it.Its a very difficult thing to understand someone's pain if you don't suffer it your self No one who hasn't got a Disease like AS or RA or similar can know how you feel and we all have different pain thresholds as well so we are all different.
You should look at the posts on here from people like James, Brad,John,Alan,mig,Kat,Wendy,Jimmy,Dear Possi,Molly And many others with severe Disease who are an example to every one how life can be despite the dreaded AS,RA,or any other terrible disease.

I wish all the best Diagnosed or not but DON'T waste your life self Diagnosing PLEASE.

Kevin

Thanks Kevin yes an excellent post, says it all AS is a monster and takes everything from us, thank you for adding perspective here.


England in the final do you think?????

Thanks Alan yes England in the final and I just saw a pink pig fly over it had green spots ha ha ha ha

Great post, it's so true that AS takes away so much from us, all of the doctor appts., lab appts., surgeries, etc. but we must plow forward with everything we've got and fight this disease...this week I have lab appts. Mon. & Wed., radiology on Fri. and I see my PCP on Tues. and Rheumy on Thurs., so as is frequently the case, I'm booked all week...but I do agree that self-diagnosis is not the way to go...and it's so funny you say that, I once read where someone said that the way they concluded that they had a certain disease was by going to all of the different disease support websites and when they found the one they felt comfortable in, that was the disease they had! So no, self diagnosis is definitely not the way to go...

Awsome post. I agree, look at all those who suffer severely and how they make it and learn from them. I have and it helps a lot. My uncle (RA) and aunt (AS) suffer severe disabilities and they manage (mostly, but with help.) I have had it since childhood (pediatrician found it in my brother and I) and been the gambit with Docs over the years. The most knowledgable doc was my first after peditrician. He had it and knew all about it and prepared me to go and face it head on and live normal for as long as possible.(I am so thankful for that, I think it saved me from earlier damage.) In spite of evidence and gene markers ect.. other docs said yes, no maybe and yes again so..it's crazy but unless you are severely damaged a lot of docs just won't concede to AS. Since it often takes so long for the damage to show up it is regularly mis-diagnosed, sometimes for years.(like you) Now I have no doc,but very soon I will be there again, once I find a job with insurance. It's been a slow and steady process for years but I am really starting to feel the effects now. It did not start to severely affect my construction job until I crossed over 40.(But it has always slowed me down and caused problems so I have to inform employers about it up front.) Now I am out of work and nearing 50 so I am in limbo as to what to do next. Pretty sure that I will not be able to continue with old job if it comes back. Time will tell. But I am middle age now so I have made it a long way, but I know some who are completely disabled by their 20s or 30s,(breaks my heart) so I believe you all should face the pain and fear and kick it in the teeth and live life by the seat of your pants as long as you are possibly able, pain or not!!!Disability may come but don't surrender to it until you have to! thank you so much for your very uplifting post!!! so many encouraging words for all!!!bravo.
alan

Thank you Alan so nice to meet you welcome to KA I hope you gain a lot from this site and the wonderful people on here.Its so good to hear that like me you have a positive attitude to life and that you haven't let AS hold you back.I agree with what you say about your job I was working in heavy engineering and kept going till I was in my 40s and then it all became too much.My disability by then was too much to continue to work and I was made disabled.But still lead a positive life doing as much as I can all be it a bit slower.Good luck in finding employment again and like you say don't surrender.

Kevin

Hi Kevin,
I haven't seen one of these posts in a while... it's a good read too. Thank you for the post Kevin. In addition to what Kevin has already said about Self Diagnosis...

While I think everyone has a right to know what's wrong with them, and I don't blame them one bit, problems can come up during the process of self diagnosis. For instance, it can get very frustrating, time consuming, and could even cause some people to obsess over something they don't even actually have, even though it feels like they really do have it. Stress is not good for any autoimmune disease, so you are better off not stressing over something you might or might not have. Self diagnosis of a suspected illness often leads to self treatment of the suspected illness (because doctors aren't in agreement), and experimenting with something that might not be right for you, might interfere or react with another treatment you already have. I'm not saying to ignore that something is obviously wrong with you, but rather don't let it become your life. I know it will be hard to do at first, especially because you might be in a world of pain right now, but try to relax, pamper yourself, enjoy yourself, and take it one day at a time. Doing so will eventually have you appreciating your life as it is, much more than you currently do now. Stress and excess worrying can lead to other health conditions such as severe depression and anxiety attacks which just makes everything so much worse.

If anyone thinks their doctor is wrong about a diagnosis, or lack of diagnosis, then maybe it would be better to consult with another doctor, rather than to take on the responsibility of diagnosing yourself all on your own. Just remember that an AS diagnosis won't happen over night, and in most cases it could take years, so it is highly doubtful that your next doctor will tell you something right away. If you do decide to diagnose yourself, it might also take you years to do too, as your symptoms change from one year to the next, either better or worse off than the year before. There are 1,000's of diseases out there, and more than 200 types of different arthritis'es, so it could be a more difficult job than you might think. Many diseases share some of the same symptoms too, which might have complete opposite treatments. This is why our doctors need so much evidence before they can say you have a 'such and such' health problem.

This site has access to information on dieting and safer alternatives that appear to help many people with 'spondyloarthopathies' and other forms of inflammatory arthritis. So if your current medication isn't working out for you, and if you have some form of spondy or other inflammatory arthritis, then have a look around in those sections of this forum. As with anything else, not everything will work for everyone equally the same. Give it some time though, and don't get frustrated or panic if you don't feel any instant relief. I think they say to give the dieting a fair chance for up to three months to see any results, but I think I have seen people here see results in as little as 3 days. For supplements, my rule of thumb was to give one a try for a month, and if it doesn't work, try the next one the following month, and so on, and so on. Sooner or later you will find something that gives you some amount of relief. Let your doctor know before you try anything first, because he or she might know something very important about you that you don't already know that can concern dieting or supplements. And don't start anything without first checking out other sources on the same subject too.

With all that said. Don't ever give up in seeking a treatment that works for you, but don't spend your life trying to conclude what's wrong with you. I know in the beginning I mentioned that I prefer that people not practice self treatment, but what I meant was I prefer that people self treat a "illness symptom", not an "illness suspicion", which are two completely different things. I just thought I would add that little disclaimer :-) Whether you have a diagnosis or not, Welcome to Kickas.org and I hope you like it here.

Taker care,
James

That's a very good point, James, about treating an "illness symptom" not an "illness suspicion". I think one important thing is to recognize that symptoms can belong to many different illnesses and while we might not doubt that someone suffers from specific symptoms, including significant pain, those symptoms do not necessarily point to a particular disease.

When I first started to develop symptoms, my GP and I explored all sorts of possible diagnoses and briefly suspected lupus (SLE). I could check off about four of the necessary diagnostic criteria. I found a lupus support site and listed my symptoms and several members reassured me it sounded exactly like lupus. These were peripheral symptoms, mind you, not the most serious symptoms, but the deal was that if you had something like five out of eight, then bingo, positive diagnosis! I briefly became convinced. My first rheumy said abolutely no way and very briefly I was annoyed by that. I thought, I don't want lupus but if it's that then at least I can deal with it. Since then I've thought, boy, I'm glad it wasn't that.

I went back to the lupus board and told them that the rheumy said no. I immediately got rousing support from others who declared that rheumies are useless and go back and demand a diagnosis etc! Fortunately, I came to my senses and tried to be more objective. If it was lupus, it certainly wasn't a classic version. So I decided to wait and see how things developed.

Changing my perspective helped enormously. I got less obsessed and as the weeks went by other symptoms developed which led to a tentative diagnosis of AS or at least an autoimmune disease. Then it became clear it wasn't AS, - no spinal involvement, which I've since come to realize is THE key symptom of AS that distinguishes it from other autoimmune arthralgias. Finally, the classic symptoms of RA showed up (hand and wrist involvement etc.)

This experience has influenced my attitude to the process of diagnosis. I'm much more cautious now about self-diagnosis and "influencing" my doctors to try and convince them. I think time will tell.

In the meantime, I have huge sympathy with everyone who suffers symptoms that make life difficult. Chronic pain is miserable and can be hard to comprehend, encouraging accusations of malingering. I'm sure everyone at KA understands and sympathises with people who are suffering while those around them don't understand and don't care.

James, you really hit the nail on the head with your comment about seeking safe treatment that works without spending your life trying to conclude what's wrong with you.

Hi James,
Thanks for that and adding all that extra information you are so right if you have a definite Diagnoses then its different and do all the research you can to help your self. But get the Diagnoses first so you know what you are treating. Not knowing could do you a lot of harm.

Kevin

Good point Wendy and I couldn't agree more, spinal involvement is THE key symptom...it was what differentiated my symptoms from the symptoms of other auto-immune diseases and brought the DX of AS to me...and believe me, I've seen enough auto-immune diseases in my lifetime, it is so heavily imbedded in my family and has been all of my life, there's virtually no one in my family that isn't afflicted with one of these diseases, we've even lost family members to some of these diseases...but my point is that being so familiar with the symptoms of Lupus, MS, RA, Fibro, I knew that something else was wrong with me long before I got my DX and I ultimately decided to let the doctors handle it, even armed with all of that info and having medical professionals in the family, I knew that I wasn't qualified to diagnose or treat myself...xxooxx