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mostlysunny77

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 #1 
Hi Everyone - I am so glad I found this site that is so full of information, personal experience and support!!! I am desperate for some answers! I feel like I have run into a brick wall. I am 47 yr. old female who has always been extremely active. I play competitive tennis and workout at least 3x week or at least did. About 4 years ago I started feeling bad enough to go into the dr. and had a positive ana 1:160 speckled. I was sent to the rheum. who retested but by then I had started feeling better and had gone gluten free and made some other diet changes and it was 1:40 hom-ogenous. (I was neg, for celiac).He also tested me for SM and Sjogrens and they came back negative. He sent me on my way and said to come back if I felt bad again. Fast forward to a few months ago, I was still playing tennis and exercising but I was finding that every time I worked out it was like the first time ever. The next day I was way more sore and tired then I should have been or had ever been before. I had muscle weakness and poor recovery. My back went out and then my neck. I started having a ton of pressure in my neck on both sides. I was having pain in my tongue and the muscles in my neck felt as if they were going to spasm at any moment. I also had other muscle spasms.I even had pain in my jaw when chewing. My knees were also both very painful. My ana came back as 1:160 hom-ogenous. My RF factor was 15 only one notch above negative. I cannot get in to to see the one rheumy that was super highly recommended until September but I will drive myself crazy before then. Is this Lupus??? I have not had the malar rash or mouth sores and really don't have all of the symptoms they have listed but there is something obviously wrong with me. I really feel like the fact that since I am not scheduled until September the doctors obviously don't seem to really feel that concerned about it. It's kind of like oh well, sucks for you, good luck and then your just left on your own to continue feeling bad. I'm very frustrated right now! On another note I have also been diagnosed with medullary sponge kidney and SVT so I also seem to have other systems in my body with issues that can also go along with a lupus dx I think. Any insight would be very much appreciated! Thank you so much for your time.
Robinj

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 #2 
Welcome! 
Obviously, no one here can tell you if this is lupus or not. It has taken many of us years to get a dx. Lupus is a very complex disease and can mimic many other conditions.

I find this site very informative:

https://www.hopkinslupus.org/

Hope this helps

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upstater

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 #3 
I can relate. I have had a similar experience. Some symptoms - rash, photosensitivity, muscle pain, and vascular issues. Dermatologist did initial testing - made rheumatology referral. ANA was 1:160 speckled. Then since tested twice more 1:320 speckled - though I understand the difference is not significant, as it's only one titre different. Also had RF negative twice and then positive once. Frustrating when things change....and confusing. Sometimes I think it is different labs and testing methods.

I got into 1st rheumatologist fairly quickly and he ran a lot of labs and seemed very blasé. He didn't call with results and I was trying not to be a pest, so I waited for my 2 month recall visit and he was completely unprepared. No idea what he had run or what results were and just said "if I didn't call you, they were normal" I asked for a copy and they were not all normal. My current rheumatologist ran a much more comprehensive panel, seems far more knowledgable and ultimately diagnosed me with undifferentiated connective tissue disease. I also had a scalp biopsy with dermatologist that came back as discoid lupus.

As Robin said...it is complex. And that is very frustrating both mentally and physically. It's hard to not know what is "wrong" with you or what course it will take.

I am a terrible waiter, but it's better to see a good rheumatologist who has experience with lupus and other autoimmune connective tissue disorders - as many just seem to deal with arthritis. Even when your symptoms aren't incapacitating, it's important to have someone you can dialogue with and who can provide you with education and treatment - even if the diagnosis isn't clear. 
Robinj

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 #4 
I have said this before, but it bears repeating......

regardless of the name, Lupus, MCTD, UCTD....

If you are seeing a qualified doc, AND your labs and symptoms are suggestive, you should be started on Plaquenil. If Plaquenil (which takes 4-6 months to show improvement) HELPS, it is indicative of a likely AI issue.

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
mostlysunny77

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 #5 
Thank you so much for your responses. I just feel totally lost and wonder if I am just going to have to deal with feeling like this or worse for the rest of my life. @robinj thank you for the link. I looked it up and have been doing tons of research on it but as you know it just gives you the basic or generalized symptoms and explains what ana is but isn't black and white or definitive. I do so much better without gray areas. It would be so much more helpful if the info. says oh you have a positive ana then you for sure have this or you have these symptoms then it is definitely this. I understand you cannot give me a diagnosis but I was just hoping that maybe someone out there had very similar symptoms or their ana results were similar and could tell me if there's turned out to be Lupus. Or maybe theirs turned out to be old age. I just don't know. @upstater that is just terrible that your first doctor treated you that way. It seems ridiculous that you had to get the results yourself to see what was going on. You really do have to be your own advocate!I'm very glad that you have a new doctor. I am also a terrible waiter!I have called my general practitioner back and asked for a back up referral. Maybe I don't need to wait for the super awesome head of rheumatology and just need a good doctor that can see me sooner than Sept. I just want to get back to feeling well enough to play tennis and do my normal things. I haven't been able to play since this started  few months ago.
Robinj

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 #6 
"It would be so much more helpful if the info. says oh you have a positive ana then you for sure have this or you have these symptoms then it is definitely this."

That is the issue. There is no definitive test/symptoms for lupus.

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
upstater

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 #7 
Yeah....I wish there wasn't so much gray either. I mean I guess much of medicine isn't an exact science, but this seems like a particularly gray one. And even if you have lupus....one person's lupus is not another person's lupus. And I also believe that one person with the same labs tests and symptoms, could see 3 different rheumatologists and get 3 different diagnoses.

The one thing I remember my current rheumatologist said to me when I expressed my concerns about the various autoimmune diseases was "don't despair, we have treatments for all of them". Now....that doesn't mean they have a cure or an easy fix, but that there was hope. I also know people who have various complex autoimmune disorders who are doing very well.

I am also around your age....and this all was very unexpected for me. I always thought it was a younger persons thing....obviously a misconception.

It can't hurt to get into someone sooner and keep the other appt in case you don't feel that it works out. I ended up seeing 2 local rheumatologists before finding my current one, who I travel several hours to see. And even though I am diagnosed as undifferentiated, which I am totally fine with, the key is that she started me on treatment. The second one I saw thought I had psoriasis.....and before he arrived at that conclusion, said there was no point in treating anything proactively.

As Robin said....Plaquenil is often prescribed to prevent disease progression and reduce flares. So I am happy to be on it, as I feel that I am doing something to help myself.
mostlysunny77

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 #8 
I totally agree Robinj!

Upstater I liked your idea  of going in sooner but keeping the other appt. so I just made a new appointment with the rheumy I saw 4 years ago. He could see me sooner - end of July. I had no idea so many people needed rheumatologists! Unless maybe they only work 1 day a week??? Geesh!

I also looked back at my blood work from 4 years ago. I had a positive ana 1:160 with atypical speckled pattern. Then was retested by Rheumy after I got in to see him and it was 1:40 hom-ogenous. My recent one was 1:160 hom-ogenous. Is it common for the patterns to change? I know the dilution rate can change but wasn't sure if the pattern change meant anything. Also do these ana numbers give any extra clues as to it being Lupus or not???? Does the fact that it is fluctuating at least show that it is not a false positive?
Robinj

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 #9 

Anti-Nuclear Antibody (ANA) Test

Anti-nuclear antibodies (ANA) are autoantibodies to the nuclei of your cells. 98% of all people with systemic lupus have a positive ANA test, making it the most sensitive diagnostic test for confirming diagnosis of the disease. The test for anti-nuclear antibodies is called the immunofluorescent antinuclear antibody test. In this test, a blood sample is drawn and sent to a laboratory. Serum from the blood sample is then added to a microscopic slide prepared with specific cells (usually sections of rodent liver/kidney or human tissue culture cell lines) on the slide surface. If the patient has antinuclear antibodies, their serum will bind to the cells on the slide. Then, a second antibody tagged with a fluorescent dye is added so that it attaches to the serum antibodies and cells that have bound together. Lastly, the slide is viewed using a fluorescence microscope, and the intensity of staining and pattern of binding are scored at various dilutions. The test is read as positive if fluorescent cells are observed.

Usually, the results of the ANA test are reported in titers and patterns. The titer gives information about how many times the lab technician diluted the blood plasma to get a sample of ANAs. Each titer involves doubling the amount of test fluid, so that the difference between a titer of 1:640 and 1:320 is one dilution. A titer above a certain level then qualifies as a positive test result. ANA titers may increase and decrease over the course of the disease; these fluctuations do not necessarily correlate with disease activity. Thus, it is not useful to follow the ANA test in someone already diagnosed with lupus.

The pattern of the ANA test can give information about the type of autoimmune disease present and the appropriate treatment program. A hom ogenous (diffuse) pattern appears as total nuclear fluorescence and is common in people with systemic lupus. A peripheral pattern indicates that fluorescence occurs at the edges of the nucleus in a shaggy appearance; this pattern is almost exclusive to systemic lupus. A speckled pattern is also found in lupus. Another pattern, known as a nucleolar pattern, is common in people with scleroderma.

It is important to realize that even though 98% of people with lupus will have a positive ANA, ANAs are also present in healthy individuals (5-10%) and people with other connective tissue diseases, such as scleroderma and rheumatoid arthritis. Moreover, about 20% of healthy women will have a weakly positive ANA, and the majority of these people will never develop any signs of lupus. One source cites that some ten million Americans have a positive ANA, but fewer than 1 million of them have lupus. Therefore, a positive ANA test alone is never enough to diagnosis systemic lupus. Rather, a physician will order an ANA test if the patient first exhibits other signs of lupus. This is because by itself, the test has low diagnostic specificity for systemic lupus, but its value increases as a patient meets other clinical criteria. It is possible for people with lupus to have a negative ANA, but these instances are rare. In fact, only 2% of people with lupus will have a negative ANA. People with lupus who have a negative ANA test may have anti-Ro/SSA or antiphospholipid antibodies.


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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
upstater

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 #10 
Hom-ogenous is fairly common in lupus, but can be associated with other AI disorders. Speckled is "most common and least specific". Meaning it's seen a lot....but in a lot of different things. I have even read that rosacea can come up with a positive speckled ANA.

I don't know why patterns change, but they sometimes do. Not sure if it has more to do with it actually changing within the person?? Or if it's based on the lab, the lab tech or the type of assay used?
mostlysunny77

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 #11 
You guys are awesome for helping me with my questions! I so very much appreciate it! Thank you!!! :)
Robinj

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 #12 
The Johns Hopkins Lupus site is great and very easy to navigate and the info is RELIABLE!!

https://www.hopkinslupus.org/

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
upstater

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 #13 
Hopkins is like the holy grail of rheumatology. I know someone who had a very complex case who goes there. They work with her local rheumatologist. She loves the care she receives. 
mostlysunny77

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 #14 
I will check it out! Thanks!
Cakelady

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 #15 
Hello have you ever heard of Stanford
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