Just been back to the Rheumatologist. I am still positive for Jo-1 and have elevated CK levels (but only 295, normal is apparently 150). Rheumatologist is not concerned at all about the CK levels and only retested for them this time because they were elevated last time (309). I feel that he pretty much dismissed all the other little symptoms I've noticed (which do seem like nothing compared to what some of you are going through). I just have to focus on the Raynauds and keeping my hands warm. I really don't see the point in continuing to see him, forking out hundreds of dollars to only be kept waiting, given minimal information. Is there any chance at all I can have the Jo1 antibodies but not have ASS and not become sick?

Hi Aggie. Even though I am not a doctor, I can pretty much assure you have ASS. (yeh girl...lol) Even though the high ck levels can be normal, the presence of Jo-1 antibodies, along with the Raynauds is classic ASS. I will say that you may be lucky and never actually get anything more then the Raynauds. I will pray that is the case for you, but I would be prepared and diligent as well. Monitor your body, and know what the signs and symptoms of other possible effects of ASS can be. And do not be shy about getting them checked if they arise. Also, if it was me, i would be looking for a new specialist. You need an advocate for you. Not someone who is going to "pass" this off as something minor. Good Luck Aggie. God Bless and Keep Up The good Fight. Wayne

Thank you Wayne. It has been (and still is) extremely frustrating to not have a definitive diagnosis. If I have ASS so be it, I would just like to know either way for certain. I feel like I have been living in some kind of limbo, wondering whether I really have ASS and whether the little things I have noticed (since paying more attention to my body) are all just in my head. I still have not yet told my family and was hoping to get some kind of answers today which might help in explaining things. No such luck there. I will definitely try to find another specialist but with this being such a rare disease I think it will be quite difficult to find someone who will both take this seriously and who has experience in ASS and/or myositis.

Hi Aggie :) I too keep a constant elevated CK. Mine stays 500-700 with 10 mg pred and doesn't cause me or my doctor too much concern there. His concern seems to be more with getting the pred down to 5 mg than getting CK below 200. I think once your body makes the JO1 antibody, you keep that antibody for life. Is your doctor repeatedly testing you for JO1 antibody? Brandy

Hi Brandy, My next blood test request form does not have a test for Jo-1 or any of the ANA/ENA's listed on it. Just the CK levels and a few other things. Rachel

As much as I hate to say it guys. Not a great deal is known about this disease and no matter what questions you present to the Docotors or specialists all you will get is guess from them. This is not a definitive disease that has a common cure or treatment plan. All the professionals are guessing and it is only the sufferers who have the answers. CK levels don't really determine our health, all it indicates is that the immuno suppressants are doing their job. I don't have an answer except for the fact that it is an individual disease that effects us all differently and to varying degrees. So guys monitor yourselves the best you can and if unsure see the Doc just in case there is something you have missed.

I think Aggie that once your Anti Jo 1 is positive they don't keep rechecking it and Lildreamer is right about the fact that they are checking your CK and CRP are ok and see if the meds are working. As to getting guesses from your doctor, I have always felt that once they saw my treatment was working ad that the meds were the right ones they felt they were on the right path. And yes as a very unknown disease they need to see what medication works and what doesn't because unfortunately, this stupid disease affects each of us differently even though we have similar symptoms. My specialist has always admitted if he is unsure or doesn't know something but he also says he will find out. Even lately I have had a few feelings of having increased shortness of breath, chest pains etc and he never hesitates to investigate it. I suppose because I had the most horrific experience with the GP I do trust David maybe more than anyone.

Lisa you are very lucky to have a doctor who takes you seriously and investigates any changes in your symptoms. I am not on any medication whatsoever (which is probably a good thing given the side effects you all have) I suppose I just have to wait & see if things progress or not. I have been paying lots of attention to any changes in my health etc but don't have a lot of confidence in my specialist after the last visit. I very much doubt I will go to my next appointment with him, unless of course there is anything of significance occurring to report to him in the meantime.

Hi Aggie. I too have a doctor that takes this very seriously. He is actually about as knowledgable on this disease as any doctor can be. I actually have a team. And it is a disease that can be definitively defined and diagnosed.The presence of the antibodies are one of the proofs used. the only 2 things that doctors are sure about this disease at this point in time are 1. The only predictable thing about this disease is it is totally unpredictable this is why we are all very similar, yet so different in our general symptons, abilities and reactions to the meds. 2. Treatment must be aggressive. because of the very nature of this disease, one can not afford to take the "wait and see" approach. As many of us can attest to, you can go from normal to near dead in a very short period. Make sure you stay on top of things Aggie. Don't let them get a chance to get out of control. God Bless and Keep Up The Good Fight. Wayne

Agree totally guys, once the Anti Jo is evident, it is a sure thing. However, I still can't help but think that because of the rareness of this disease and the limited research done on it, it can't be addressed in a manner similar to those diseases that are more common and have been in existence for a long period of time. I am hoping that over time some doctor or specialist gets a real handle on it and comes up with a 100% treatment plan that will allow us all to leave without of fear.

Hi Wayne, knowing all that I now do about ASS I feel very uncomfortable with this Dr's 'wait & see' attitude. I am absolutely terrified of how quickly things can progress. I am only 33 and have two boys to provide for & take care of. I do not want them to grow up without their mum. I have not told them anything about this and couldn't even begin to imagine how terrifying it would be for them if I became extremely sick. I guess I am extremely lucky that I have knowledge of the many signs & symptoms to be aware of which will hopefully mean that if things do progress I can get them seen to straight away. In the meantime I am making the most of everyday, trying to keep stress levels down & eating well.

As long as you can recognise when specialist intervention is required and not take any risks.

Tonight my son, who is in Year 12, said to me he was looking at organising his art assignment earlier, which was a shock in itself, but he said he was doing it on places. He elaborated by saying familiar places (home), dark upsetting places (Greenslopes Hospital), fun, happy places (places we go on holidays with and without our dogs) and then back to the familiar place of home. He has been saying little bits and pieces lately about how much this illness has affected him. As you know I have a lawsuit in progress against the GP I visited and have a fairly good case but just last week I received an email from my solicitor with a copy of the GP's star dec. Number one the solicitor is astonished he did one, which is never done and secondly, the GP has shot himself in the foot as he has contradicted himself sayings things like I did not visibly see her blue fingers but I did discuss Raynauds. Another one is, i did not tell him I had a sore neck and shoulders but he has stated I probably had Fibromyalgia and the list goes on. My son asked me, if the case goes to court could he please get on the stand and say how much this has affected me. Not so funny!

Hi Lisa, I think it's wonderful that your son feels brave enough to take the stand in court to tell of how your illness has affected him (and you). No doubt he will be able to send a powerful message to the magistrate/judge deciding your case. I hope everything goes in your favour and whilst such a decision cannot undo any of the damage that has been done, hopefully the financial compensation will ease the burden somewhat for you. All the very best of luck. Rachel

Well said Rachel.

Many thanks Rachel

Alexgirl. I wish you all the luck in your suit, for the same reasons as Aggie mentioned, and also for the fact that maybe it will make some of these other doctors take these types of diseases more seriously, and not be so dam lacksidaysical (yeh, probably not spelled right, but I don't care...lol). They need to be aware that these are humans lives they are dealing, not just some scientific medical term or condition. We are real people, with real issues and feelings and lives. Good Luck!!! God Bless and Keep up The Good Fight Wayne

Totally agree Wayne! I know the GP I went to concentrates on my age and the idea of menopause and just thought the rest was whining!

Hi Alexgirl, Am i being thick or is there no way of sending a message to a member??, we have something particularly in common, would be good to get in contact. thanks

Oh, and hi Wayne, it's Mark :)

Hi Mark if you want to,if you're on Facebook just send me a friend request to chat about things. Lisa Holloway. Lisa