ANA WITH REFLEX TO PANEL IF POSITIVE ?

[Daisycat]

What exactly is my new neuro looking for with this test? She ordered it but somehow ( I have NO idea how) the lab “lost” the sample… so I have to go Monday to get it redone. I googled it (big mistake)…



So now I am really confused about why this is being done now and was never done before. She is also the first one to test my vitamin D levels which came back high… which isn’t suprising to me since I was taking a lot of vitamin D supplements and getting natural sunlight and eating foods with vitamin D. She didn’t seem to worried about the D levels and just said to cut my intake of supplements in half.



But should I be worried about the other test? My PCP said he didn't think it was anything really I should be worried about and some neuros just like it as a baseline test. I know she probably didn't say anything because she wasn't expecting the lab to misplace a blood sample.... But has anyone else had this test done and what does it all look for?

[Jules A]

I googled it and didn't see anything earth shattering. It sounds like your doctor is being thorough with rule outs and trying to put pieces of the puzzle together. I like this site's explanation:

https://labtestsonline.org/tests/ant...r-antibody-ana

[Daisycat]

I googled it and didn't see anything earth shattering. It sounds like your doctor is being thorough with rule outs and trying to put pieces of the puzzle together. I like this site's explanation:

https://labtestsonline.org/tests/ant...r-antibody-ana

I guess my thing is I am not even OK with the one disease I do have. If it comes back that I have another I honestly do not think I would handle it. In fact I already know what I would be doing and I would like at least another 20 years before I have to go there.

[pennstater]

Pre-diagnosis and as part of the diagnosis process, I had this test.
I wouldn't worry about it.

Neuro is being thorough to make sure no coexisting conditions. For some people, the MS symptoms may be same as another autoimmune disease, so it could be that they don't have MS or have both MS and another condition. But since you had optic neuritis, I don't think that is the case.

[Daisycat]

Pre-diagnosis and as part of the diagnosis process, I had this test.
I wouldn't worry about it.

Neuro is being thorough to make sure no coexisting conditions. For some people, the MS symptoms may be same as another autoimmune disease, so it could be that they don't have MS or have both MS and another condition. But since you had optic neuritis, I don't think that is the case.

Im just worried if I have two things. I’m no where even close to being 1% of the way ok with the first one.

I just wish they hadn’t lost my sample.

[IntoDust]

But has anyone else had this test done and what does it all look for?

ANA tests are a common part of the diagnostic process for MS. They're also commonly run in general practice if a patient has any symptoms of an autoimmune disease.
I had my ANA run 3 times during the diagnostic process. My neurologist was looking for lupus and I think she believed that I may have neuropsychiatric lupus instead of MS at one point. I don't. I do, however, have a positive ANA.
The ANA with reflex to titer works like this: If the ANA is positive, they will run additional tests that will identify how high the titer is and what pattern shows on the stained cells.
The lab uses Hep 2 cells and stains them with a dye. If the cells light up, they wash the slide with a solution once. If the cells no longer light up, the titer is 1:40. If it takes two washings, the titer is 1:80. Three washings is 1:60 and so on, doubling in numbers with every washing.
Then, they will look at the pattern of the cell stain. The most common is speckled or homogenous. These patterns are associated with diseases such as lupus or sjogrens. A less common pattern is nucleolar and it is associated with scleroderma and myositis.

My ANA is positive at 1:80 with a nucleolar pattern. I'm not worried about it at all. Why? Because it is a low titer, it has not increased and so far I am not showing signs or symptoms of scleroderma or myositis. This is considered an incidental finding.
Low titers of 1:40 or 1:80 have a relatively high degree of false positives. It just means that your body has the antibodies circulating but it does not mean that you have the disease. Most rheumatologists won't even consider an ANA positive until it is 1:320 or above and the patient has symptoms of an autoimmune disease. From there, they would run more panels looking for very specific antibodies that are associated with the staining pattern.

So, just having the test ordered is nothing to worry about. Even if it comes back positive, it is still not necessarily anything to worry about. Do yourself a favor and do not look at your results before your doctor has a chance to review them and speak to you about them. You are so on edge about your health that I think it could cause a lot of unnecessary stress and panic on your part if you saw that the test wasn't negative.

[MyGirlsMom]

Yes, it always seems like there is just one more thing on top of everything else. The ANA panel is pretty standard and my doc has repeated it over the years. A number of years ago, My ANA panel came back positive for Scleroderma, which to me is a much harder disease to have than MS. She sent my to rheumatologist and since I have have no physical symptoms, the thought is is that I may never get it. For a while it freaked me out...much more than my MS but over time I really don’t think about it at all.

The blessing in MS is that I live much more in the present than I have ever lived in my life. And with my recent health issues, that has become a daily focus for me.

Hang in there Daisycat...I am sure it will all be ok! Best to you and do keep us posted, MGM

[Daisycat]

IntoDust

I think if the Dr had told me about it and explained it I would be OK. To be fair none of the Drs ever tell me what all I am having done. That is so much more information that you gave me. I know what I am going to be reading about when I get home tonight.


And you are right, I am super on edge about my health , but I feel like until this new neuro I have basically only had Dr google for most of my info and my poor PCP to answer what he can. He already admitted neurology was his least favorite part of school, but he does his best to help and will give me links to articles if it is a topic he doesn’t feel 100% comfortable with.


It’s also not like I am asking him a question every week. I think when I was first diagnosed I asked him a bunch , when I stopped seeing my first neuro I asked him two ( can he order my MRI if I drive 1-2 hours for a different Dr at the same hospital branch and if I decide to go without an neuro can he order y meds. The first one was yes… the ordering meds was a no.



My luck of assuming something is “no big deal” didn’t work out for me last time. (Double vision – I assumed stress and low B12 and lack of sleep). So I guess I am paranoid now everything is something bad.

MyGirlsMom


I think my biggest concern is why this was never done in the first place and why is this new Dr thinking it is needed. My mind is of course assuming the worst. I also think I know a lot of times when we order a test for an animal it is because we are pretty sure there is a problem. (not counting regular blood work of heart worm tests). I know human and animal medicine is different, but I am having a hard time remembering that when it comes to me.

[pennstater]

Im just worried if I have two things. I’m no where even close to being 1% of the way ok with the first one.

I just wish they hadn’t lost my sample.

I wouldn't worry about it. You have no symptoms. Again, just a thorough doc. I was negative. Even if positive, there are false positives.

You have to stop thinking worst case scenario. And if you are only 1% ok with your diagnosis after a year plus, you really need help. Please reconsider a therapist to help you deal with it and lower your anxiety.

Yes we all deal with grief in our own way and own time, but what worries me about you is that you have no desire to come to acceptance. Without it, you are setting yourself up for an angst filled ride.

[IntoDust]

My luck of assuming something is “no big deal” didn’t work out for me last time. (Double vision – I assumed stress and low B12 and lack of sleep). So I guess I am paranoid now everything is something bad.

Assuming something was no big deal didn't work out for me either - I couldn't see out of my left eye and I assumed I must have gotten dirt or smoke in it. Nope, it was the first undeniable symptom of MS. Still, I don't get myself super worked up over every single test that is run on me and there have been a lot.
Getting yourself all worked up and becoming paranoid that everything is something bad is the worst thing you can do. Not just for your mental health but because stress is one of the biggest risk factors for a relapse.

At some point, you're gonna come on here and post that you're having a relapse and you don't understand why because you have done everything to keep yourself from having one - You exercise non-stop, you are on an extreme diet, you stopped smoking, etc. Then we'll end up going in circles with you about how you need to get your stress in check and seek the help of a therapist. I sure hope it doesn't take a relapse to convince you that you are not actually doing everything you can to keep this disease in check. Your mind needs just as much care as your body.

[sarabeach123]

I too had this test - it was one of many many tests done. It just must have been one of many things not tested that is on this new neuro's preferred "checklist" of things to go through.

It is impractical to separate the mind and the body when it comes to illness. You should be treating your mind as equally as you are treating your body. You say that you have made steps that you believe will help your physical body - exercise, diet, stopping smoking, taking medication, yet you aren't addressing the emotional side which really needs just as much attention. The graditude journal that others have spoken about is a great step, but there are many other things you can do too including getting help from a professional.

[Daisycat]

Pennstater

I think my main thing is why was this never talked about in over a year. The thought worries me.

And I don’t see how I can accept this. Everyday almost I think about something from my old life that I miss and get depressed all over again.


Intodust

i did try talking to a therapist on the phone. I’m not comfortable talking about this in person. They didn’t really help me. I need to figure out how to unlock my account so I can see if there is a way to find one.



Sarabeach

I try a gratitude journal but some days it seems so trivial to me. I get the point and I’m really trying, but I just still don’t see how I can have this thing and feel 100% the same as I did 14 months ago but I know there is nothing about me anymore that is the same

[pennstater]

Pennstater

And I don’t see how I can accept this. Everyday almost I think about something from my old life that I miss and get depressed all over again.

That is what real therapy would do for you - help you accept, grieve your real losses, help you recognize and deal with perceived losses, and get on with living life.

And yes, real therapy can be hard work and incredibally, emotionally draining. But where you come out later - it is all worth it.

You won't accept, because you aren't willing to. It does appear you would rather just crawl up in depression and feel sorry for yourself. I am sorry if that seems harsh, but you have numerous people telling you that you need help - and these are all people who have been where you were.

I don't want to hear that we don't get it, that your life is over if you can't do your job, so Switzerland it is. Yes we get it, many of us have had the same thoughts. But you know what, life has gone on for us, because we expanded what our life is about. Was it easy, no. But I am grateful I didn't take the easy way out when the thoughts occurred.

You have to want it bad enough to work at it and give up the pity party. Lots of luck to you.

[Daisycat]

Pennstater


There is no “perceived” loss with this disease. I have lost my future and I feel like I have a timer above my head counting down until my “end”. I don’t know if it has 1 second on it or 40 years, but I know this disease can come up any second with no warning. I am still so confused how I could go from a normal and healthy woman with a future to a chick who sees double who might not make it to 40.


There is no way I am at a point to where I can talk to someone face to face about this. I can’t even say the words to my DR. I am crawling into my depression , because it is what is keeping me motivated to work out every day and follow my strict diet.


The thought of people I know finding out about this terrifies me every day. I couldn’t handle the humiliation if this got out so that is another reason I have to work so hard. The thought of not being trusted at work to take care of my patient’s depresses me.

I don’t want to become OK with this disease. The thought of being OK with not even being able to drive myself to the store or go to the bathroom by myself terrifies me every day. I just cannot stand the thought of losing my independence.


And if I was taking the easy way out I would have already been to Switzerland and been done with it. I am waiting until my “time”. I have my limit of what I find acceptable and I am not going to ever change that no matter how many therapists I talk to.
.

[Jules A]

Everyday almost I think about something from my old life that I miss and get depressed all over again.

I would challenge your perception because from where I sit, been there done that have the ratty t-shirt, you haven't lost anything yet except your naivete that your physical health and future are a given. Trust me I get how that sucks the wind out of your sails, it still horrifies me however it is a reality for everyone whether they realize it or not.

What exactly have either of us lost? As far as I can tell we are fairly blessed. I also suspect your memory of the perfect previous life is flawed. From what you have written I'd suspect you have not had a fairy tale life free from loss, conflict and anxiety?