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Old 06-10-2004, 05:39 AM   #1
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Hewie HB User
Angelic-ANA up to 2560..anything at conference on this high of ANA?

I've been posting as of just late on the immune disorders board...

Most recent ana was 2560 speckled. They are finally stopping looking for MS after 2 negative spinal taps and I have an appt. with the head of autoimmunology at a large teaching university in my state on July 1st.

If I make it that long.........

MS tests, epilepsy monitoring unit, ER visits for severe flank pain.. constant low grade fever, too weak to hold my head up at times and pain all over (I feel like my right side is being gnawed at slowly tortously am amongst too many other things... You'd think that a diagnosis would be forthcoming fairly quickly.... right..?

Wrong....! no matter how hard I've tried, I've been unable to get the doctors I've seen (lots!) to focus on anything but their territory "tunnel vision", or to care enough to refer me to a autoimmune specialist on a ...."she really needs to see someone... uh... like soon..." I've stopped only just short of getting on my knees and begging. I've told every one of them... I feel like I'm dying ... I feel half dead... Please.......anything you can do to help...... But they just keep boucing you back and forth like some kind of experiment in long-suffering...

I had to request the above appt. myself (last doc wanted me to see the rheumy who just shrugged at possible fibromyalgia and said "I dunno, see an infectious disease specialist maybe...?" NO LIE... he actually shrugged and said that and the neuro doc wanted me to see him again! (specializes in RA, gout, & bursiti8s).... I said NO! I want to see someone whose specialty is in the SLE, MCTD, Sjogren's, etc. area... and when she just sorta hedged... I just shook my head... came home and cried and decided that this is my last hope. If on July 1st, this appt. does not FINALLY find one doctor that CARES ENOUGH... and HAS ENOUGH BRAINS ... to visibly see via my appearance, my obvious physical weakness and the increasing ANA count with quickly increasing... now more serious malaise (losing weight, and severe kidney area pain... Then... there is no hope. Man o' man... I pray that NO ONE, no one have to go through this and that you all have more support than me... I really have no family that cares... my kids are grown and out but live too far away and besides are just too young (18, 22 & 23) to know how to deal with an ever-increasingly ill mother... I think this has scared the begezzus out of them and it's easier to stay busy with their lives.

I'm not bad looking, considered intelligent and amicable... I just plain don't get it and I'm tired...I am so very tired --- literally --- I think I may be dead soon... but most doctors today (at least in my personal experience ) just really don't seem to care....

It's been said that to live is to suffer but I say that to have the support and care of friends (tangible support) is to make that suffering bearable...and life worthwhile...

With that in mind, this board has been of help to me at times and I can only hope some responses of mine have helped others...though I'm pretty certain this post is rather depressing!

I've researched til I'm blue in the face. I've seen some of the best doctors at the state capitol teaching U nearby. Yet, they so far... have all seemed very, unbelievably ignorant as to the levels of ANA titers and their significance (or maybe they just want to be that way)... Pretty d..&&^$...d obvious to me something is going on.. I've all but given up hope that enough plain ole human kindness and concern will surface in just one medical professional who will take maybe just a speck of extra time out of his/her day to care, really care enough to pursue it farther... I'm running out of time. Cynical at this point - YES... Depressed --- H..e.. double hockey sticks - YES!

sorry... but now that I've rambled and vented...

Angelic... what if anything at that conference did you find out about a very signicficantly high titer ANA that does regress only to come back even higher?

thanks... hewie

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Old 06-10-2004, 10:10 AM   #2
Join Date: Dec 2002
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Sampy123 HB User
Re: Angelic-ANA up to 2560..anything at conference on this high of ANA?

Hang in there, AngelicBrat should be checking in shortly. Shari

Old 06-10-2004, 02:33 PM   #3
Join Date: Dec 2002
Posts: 433
Sampy123 HB User
Re: Angelic-ANA up to 2560..anything at conference on this high of ANA?

AngelicBrat won't be back online until tomorrow. I know you're anxious to hear from her. Just wanted to let you know you should check back sometime tomorrow. I have no doubt, you WILL hear from her. Take care. Shari

Old 06-14-2004, 01:45 PM   #4
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Hewie HB User
For Angelic-ANA up to 2560.. just trying again...

I'm a bit more calm today but still would like to know your thoughts on this high of ANA?

thanks... hewie...

Old 06-14-2004, 02:49 PM   #5
Join Date: Dec 2002
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Sampy123 HB User
Re: Angelic-ANA up to 2560..anything at conference on this high of ANA?

Angelic hasn't been able to get online. She knows you are looking for her response and she'll post as soon as she can.

Old 06-14-2004, 05:39 PM   #6
Join Date: May 2004
Location: Texas
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teachergirl64 HB User
Re: Angelic-ANA up to 2560..anything at conference on this high of ANA?

How are you doing, Hewie? Keep hanging in there. Just a couple more weeks to go until you see the doctor. gentle hugs, Rae

Old 06-14-2004, 10:48 PM   #7
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Join Date: May 2004
Location: Utah
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UT_mom HB User
Re: Angelic-ANA up to 2560..anything at conference on this high of ANA?

My heart goes out to you sweetie! You're not alone but I'm so sorry you have to be going through and suffering so much without support. We all love you and are praying for you! Keep your chin up. I've once heard a little quote I'm not sure where but it's something like: The crap and the tears can be transformed into fertilizer and rain for the soul to grow. (I hope I can post that???) You hang in there and let us know how everything goes! Big Hugs!

Last edited by UT_mom; 06-14-2004 at 11:01 PM.

Old 06-15-2004, 03:23 AM   #8
Join Date: Dec 2002
Posts: 433
Sampy123 HB User
Re: Angelic-ANA up to 2560..anything at conference on this high of ANA?

I knew Angelic was unable to post and I know how important it is to you to hear from her. Off-board contact is not allowed, however, she is a dear friend of mine and I forwarded her your concerns. This is what she told me, "I will write my response to that guys question here so you can paste it to him on the board. " By the way, I hope I don't get banned for this. Hewie's post seemed much too important to ignore. Anyway, this is her reply:

Hi there Hewie!

Sorry I haven't been able to answer your question, personal family stuff has been going on at home here. My brother is in the hospital and quite sick with an unknown infection. They are trying to figure out what is happening to him right now. Anyway!

You need to see a specialist that specializes in treating LUPUS patients first and foremost. Have you read about Antiphospholipid Syndrome in this forum? The Neurological problems you are speaking of and the epilepsy could be from that. VERY often we are misdiagnosed as having MS rather than Antiphospholipid Syndrome. Do you have a history of miscarraige? Do you get tingling/numbness in your extremeties, headaches and migraines, etc? With APS the blood becomes sticky and is more capable of clotting. I really think that you might have Lupus and APS going on here. The blood work for APS is the Lupus anticoagulant and the Anticardiolipin antibody.

You ANA is VERY high positive, in fact I can't believe that the Rheumy is dismissing you!!!! Your ANA suggests that you have inflammation going on and an autoimmune disease. The ANA can fluctuate day to day, and it can also go up REALLY high when we feel GOOD!! Its so weird. Have they done an Anti-DNA on you and other Antibody testing??I think that the best course of action is for you to have an Anti-DNA drawn (I suspect that its going to be really high too!!!). I also think that you need to get your medical charts dating back to when ALL of your symptoms started. Wayyyy back! Even if you had periods of migraines, menstral problems, joint pain/swelling, joints that pop out of joint or have in the past, hair loss etc. You need copies because sometimes doctors like to do the big "cover up" if someone has mussed up in your care. They can close ranks and become absolutely awful!! I would get those charts. If you do that, post to me the "odd" things that have shown up in your blood over the years because often things can be flagged in blood and urine workups years before things really kick up a notch.

As for the flank pain, I suspect that could be Lupus Nephritis. That means kidney inflammation. Have they checked your urine for protein, blood, cell casts etc? If they haven't and your showing the symptoms of urinary involvement (flank pain, discoloured and foul smelling urine, etc) then get to your GP! Is your GP on your side? If they are, you need them to get even more assertive to stick up for you. Can the GP order Antibody tests like the anti-DNA and the tests for APS? I am glad that you are seeing the head of the autoimmunity department.. I just hope that they are darn good with Lupus!!!

I am sorry that this has been such a crappy journey. Unfortunately, its a journey that many of us have been on! I had to go to London England to be diagnosed after 10 years of SEVERE symptoms with no answers. It took losing my eyesight for them to sit up and take notice, but even then they didn't assume any responsibility for whats happened to me. I had to be my own advocate and get out of Canada before they killed me. And I was darn close!!! It's also very hard to be a smart person. We as patients have to look after ourselves which is very sad because doctors should be competant to look after us!! At the conference, the Rheumy's talked about the ANA becoming less significant EXCEPT in patients that have a high value like you. That warrents further examination and proper immunological testing. As for that flank pain, I really think you need it checked out before you go septic (basically where the blood gets poisoned) and end up on death's doorstep! I can't believe that they want to do that you !!!

Also, the fibromyalgia thing is WAY TOO OVERDIAGNOSED in patients that have Lupus symptoms. Some 80% of patients are diagnosed with it and really have Lupus. It's a "copout" answer for many of us! Sheesh.. they never cease to amazing me.. Please take care and talk to you soon

~Luv, Angelic

Old 06-16-2004, 08:48 AM   #9
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Hewie HB User
Re: Angelic-ANA up to 2560..anything at conference on this high of ANA?

THANKS... teachergirl, caden/logan mom, and sampy and anyone else out there I may have inadvertantly missed..... for your reponses and care. And thanks to Angelic... I pray things get better for her and her family.. I am so sorry she had to lose eyesight!

I have been tested for anti-dsdna and anti-cardolipin and the complete anti-extracable nuclear antigen anitbody panel and more. I had an IVP last week...normal but still a lot of pain. (at least normal at the time but may have changed from everything I've read) So...... I am indeed hanging onto the hope that the visit to the new doctor on July 1st will give some answers -- or if not that -- that he at least care enough not to just dismiss it but to keep trying! And I know so many go through this.... years of it... too many doctors in this country just pass you back and forth and if it doesn't show on their test results they are handed...... welll! you all know.. the answer to this!

It doesn't make sense, it just doesn't! I know that many diseases are very difficult to diagnose and that it may take years but to just dismiss patients who are visibly ill and have a record of continuing and growing illness is just not right in my book! Tell them... you just don't know. Tell them... it may take years. Tell them... whatever! But for God's sake... don't just dismiss them. It is a sad commentary on the medical profession of today that despite all the new tests, treatments, and technologies they have... they are most often not being taught the indespensible art of simple TACT, HUMAN EMPATHY for fellow beings in severe suffering, just letting go of pride and just simple basic good beside manners! HMO's, insurance companies, the ever-increasing demands put upon the medical profession add to the problem. It's the day and age in which we live and yeah, we do live longer but not necessarily better! I have found those things that doctors just have fallen so short of on this board tho! So thanks again

My throat has been on fire (really on fire - bit hard to swallow) for 2 weeks now and my body hurts (esp. joints) but I am hanging in there... and you ALL have helped me in that!

Take care... wishing you all well... I'll keep checking in...


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