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maiyen 02-02-2012 02:38 PM

ANA 1:160 speckled and ESR 25... I am confused :(

I've had a positive ANA twice, or at least I thought it was considered positive. I was last tested in Dec and the nurse explained that the 1:160 was positive speckled (my most recent result) and the 25 ESR meant that there was some inflammation present. I just got home from an appointment today with a different rheumy (he has these records from the other doc) and he said that everything looks fine so he doesn't feel the need to do any further testing at this time. I have had other tests which have been negative, I wouldn't say the whole gamut, but a good number.

He suggested PT to see if the chronic pain/symptoms that I'm having is either myofascial pain syndrome, fibro, or both. I guess I am just confused because from the nurse's conversation, I thought that a positive result would prompt more tests maybe? Unless it is not positive and just nothing worse pursuing. I don't know...

Thanks all.

jennybyc 02-02-2012 04:09 PM

Re: ANA 1:160 speckled and ESR 25...I am confused :(
I've had my ANA go positive and then negative and back positive again and back and forth for years. Found out that certain meds and other disease can do this. And the ESR can go up that high for any number of reasons including stress.

The big problem with all of these auto-immune disorders and their tests is that they vary. ESR and ANA can be affected by so many things and neither ever reals points to anything conclusive. Even the Rheumatoid Factor is inconclusive in that 5% of the general population has it but no Ra and 25% of those with Ra don't have it.

Auto-immune disorders have patterns and variations in intensity. Most of them have a laundry list of symptoms and test results that when put together finally tell the docs what is wrong. For Ra, it's 5-6 out of a list of about 8(blood work is only 1 on the list) and for lupus, it 7-8 out of 10 where the blood work is 1 or 2 factors. The fact is, blood work tells the doc very little. Observation tells them a lot more.

Symmetry of joint involvement is more important with Ra than blood work. The neuro involvement of lupus is more important than blood work or that often talked about malar rash. Each disorder has a few things that really point to a diagnosis.

Find yourself a good doc who thinks you do have something developing and who is willing to watch you on a regular basis. Keep a journal of symptoms that you think are related....easy to forget what happened a few months ago to the middle joint of your pinky finger. Look for you got really tired and had a low grade fever and your elbow hurt, then exactly 6 weeks later the same thing happened. Don't worry about blood work...I have RA and am considered sero-negative as I don't have any positive "specific" tests for RA but I definitely have RA. Sometimes the blood work follows the disease instead of precedes it.

Hope this helps...I know your frustration.


luca689 02-03-2012 09:34 AM

Re: ANA 1:160 speckled and ESR 25...I am confused :(
Ditto what Jenny said. Symptoms are very important in AI dieorders and blood work is oftimes negative. That being said, many Dr's do not consider a 1:160 indicative of AI disease or positive, for that sake of the matter, in the absence of symptoms. If you ARE having symptoms, do keep a journal as Jenny says. I have scleroderma, for example, and there is no specific labs for that at all, although they can indicate a great many things with symptoms. The SED rate can also be high in the absence of AI disease. If you were fighting off something like a cold, even if you had no symptoms of the cold, could raise it. If you feel comfortable with your new Dr. (and I do believe it is very important to have a good relationship with your Dr.)and he is treating you for the symptoms you do have, ya kind of gotta have faith that he knows what he is talking about. Doesn't always happen that way, but good communication between patient and Dr goes a long way in ruling things in or out.

maiyen 02-03-2012 12:48 PM

Re: ANA 1:160 speckled and ESR 25... I am confused :(
Wow, you guys are great and with great advice. I do get sick almost on a 3-4 month pattern...actually Apr, Aug, and then Dec of this year and it always feels the same; fever, chills, my regular flu-like body aches get even more intense, nausea, etc. I always think that I have the flu, but when they do the flu test it comes back negative. My lungs will sound okay and the GP won't know so she assumes it bacterial based off of the symptoms and gives me antibiotics. I will write things down like this and additional information and start keeping a journal. I've seen many people do that for their aches and pains.

I do take a few prescription medications for migraine prevention and polycystic ovarian syndrome so maybe some or a lot of these symptoms could be from the meds (*symptoms include: thinning hair/hair loss, insomnia, cold intolerance, digestive problems, photosensitivity, small circular red rashes that come and go, extreme reaction to bug bites, chronic pain (jaw, shoulders, back, buttocks, hips, and feet that is usually flu-like deep achy pain; neck always feels stiff; lower back, butt, and hips hurt very badly after I sit for awhile), tenderness in certain areas; aggravated from pressure of sitting or lying down, burning pain in my knees, legs, and shoulders when I try to exercise, dry eyes, some arm and hand weakness, possible swollen lymph nodes under the arms - I keep forgetting to bring that up, memory problems, headaches/migraines, difficult menstrual cycles...hmm those are the ones that I can think of now). But if that is the case and the doc(s) think so, I just wish that someone would tell me. It makes me feel as if they are not listening or taking me seriously.

I’ve had three appointments so far with two different rheumatologists and they both have gone in the direction of "Could be fibro…not sure…try this and we’ll see how it works for now.” This most recent doctor had fibro listed as the diagnosis in the notes before I went to the first appointment and filled out my paperwork for him (it’s at a large hospital and all the doctors can use the same network for notes, medication records, lab tests etc…well I could see it because it showed up in my profile when I log in). I don’t think that I would be so resistant to the idea of a fibro diagnosis if it just seemed that any of my other symptoms mattered.

Anyway, I’ve yammered on enough now. I just want you to know how much I appreciate the advice and information that you both have given me, and the fact that you took the time out of your day to help. You often hear that if there are certain indicators, then those should lead you to do more tests. But I’ve never heard it put in this way and it makes sense. I guess I just need to really put some more thought into this.

Also, how can you tell when you have a good doctor who thinks that there might be something developing? Mine seem to be the same, even the neurologists that I've been to. They take notes, nod in agreement, make a couple of comments to a few questions that I might have, and then give their thoughts (which as you know, have been the same). If I'm asking for too much, my apologies.

And thanks again...I cannot thank you enough.

jennybyc 02-03-2012 02:42 PM

Re: ANA 1:160 speckled and ESR 25... I am confused :(
Beware that fibro can be a "garbage can" diagnosis.....when they have no idea and don't really care, they tell you it's fibro. If a doc has that down before you even see them, go elsewhere.

Fibro doesn't cause fevers and nausea. Fibro doesn't make the ESR go up or a slightly positive ANA. Keep watching. If it's an auto-immune disorder, sooner or later it will show up.

good luck............Jenny

maiyen 02-03-2012 03:38 PM

Re: ANA 1:160 speckled and ESR 25... I am confused :(
Hi Jenny,

I don't know if you remember, but we've chatted briefly about my doctor options before and I thought that this most recent one was the better pick (and you were so helpful back then too!). He seemed like he was going to be more thorough...well maybe not. I didn't even know that a doc would suggest myofascial pain syndrome and/or fibro without feeling for trigger points and when I felt pain in only two fibro tender points during the first visit?

Now I've been to two rheumies who have quickly thrown out the f word as the main contender (the other rheumy didn't do the fibro tender point test at all). If I feel this frustrated after dealing with specialists for this amount of time, I'm so sorry for everything that you all have had to go through over the years.

luca689 02-06-2012 10:38 AM

Re: ANA 1:160 speckled and ESR 25... I am confused :(
Quote "Also, how can you tell when you have a good doctor who thinks that there might be something developing?" Here's the problem with AI diseases. It takes time to diagnose, unless you get a case of fast onset scleroderma or something that's very obvious. Many times, you may get a few symptoms and a positive ANA but never develop an AI disease. Sometimes, you get all the symptoms with negative blood work.
Confusing, yes? And of course, once you get a label of scleroderma at least, you will not be able to obtain life insurance. I believe that to be the same for lupus and I don't know about RA.
And then too, are the drugs. I do not know about the drugs used to treat RA, but the ones used to treat scleroderma and lupus can have some pretty significant side effects. Scleroderma doesn't even really have an approved drug treatment and there is no guarantee that any of the meds you DO take will be effective.
Bottom line line is not: how can you tell if you have a good dr who thinks something is developing, but do you have faith that your Dr can tell the difference between nothing developing, something developing or using a wait and see approach. You have to have faith in your Dr and your Dr has to have faith in you, that you accept their knowledge. If you don't have that, you could be running around forever trying to get diagnosed for something that isn't there and maybe missing what is. You may even have to go through several Dr's to find the right fit for you. I kind of go by: are my symptoms being adequately treated? CAN they be treated or am I just being whiny? Does my Dr treat me with respect and do I respect him, and does he know the difference between me being whiney and a real problem that needs to addressed. (I've both been whiney and no big deal, and I've been whiney about one thing and during that conversation, something will come up that really was a big deal but that had nothing to do with whatever I was whining about, LOL) It's a lot to take into consideration when you feel crappy, I know. Keep your journal and continue to ask questions; get your answers and symptoms treated. Keep searching until you do find a Dr that you can have a good relationship with; one that will treat you, not just labs or lack thereof.

maiyen 02-17-2012 03:08 PM

Re: ANA 1:160 speckled and ESR 25... I am confused :(

I never got to thank you for your response to my doctor question. You brought up some good points. I'm not sure who I trust and if I trust either one of these doctors (although one of the doc's nurse is great). This scenario is quite new to me, at least seeing a rheumy for these types of symptoms. And I guess I just don't know how to handle it properly or what the realistic expectations are. I've mainly only seen doctors for acute problems or chronic migraines.

I'm supposed to go to PT for a month to see if that helps and if not, report back. I'm also supposed to get a sleep study done, I guess to see if there are any underlying issues causing my insomnia? I just expected this process to be different (and much less expensive). It is hard for me to want to pay so much for PT when I'm not sure what is wrong just to see if it will help anything. The same way that I tried the weekly vit D prescription for a couple of months which didn't relieve the pain. When I told him that didn't help, he just responded that no improvement was common. I understand that he wants/needs to do trial and error things, but it hurts in the meantime.

Sorry I'm being a grumpy gus...I've been sick for most of the week. Hope you all have been well.

luca689 02-20-2012 10:07 AM

Re: ANA 1:160 speckled and ESR 25... I am confused :(
I agree that this whole process can be very frustrating, time consuming, and expensive. I am curious if your Dr followed up on your Vit D test after completing your Rx. Just because it didn't seem to help doesn't mean that you didn't need it. I get tested regularly because I cannot be in the sun. I hope your sleep study goes well and that you don't need a CPAP, but if you do have apnea getting treated will make a TON of difference in how you feel. At least you have a plan. It may take time to sort everything out but hopefully you'll get better rather than worse! Good luck and keep us posted!

maiyen 02-20-2012 12:02 PM

Re: ANA 1:160 speckled and ESR 25... I am confused :(
No the rheumy did not do a follow-up vit D test and did not give me a refill prescription for it. I meant to ask him if he had any ideas as to why it might be on the lower side, but it was another question that I forgot to ask. He just suggested to try one month of physical therapy to see if that would help, if not then go back to see him. The other rheumy is the one who wants me to get the sleep study. I am not going to continue seeing both of them.

Thank you for the positive thoughts. That's too bad that you have to constantly be tested for the vit D due to your sun limitations. But that's good your doctor is keeping an eye on it.

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