[kate88]

I have a long and winding tail of a strange medical history, and am beginning to wonder and doubt my sanity. It wasn't until this summer that I had a blood test for an ANA titer, and it came back positive, but very very weakly. 1:40, nucleolar pattern. My ANA was checked twice, once six months ago, and once recently. Don't know if this matters, but my mom is ANA positive as well, and was suspected of having RA but doesn't, and hasn't really had major problems aside from joint pain in her hands that she attributes to being 56 years old.

Here is a brief summary of the strange things that have happened to me.....when I was in college I had horrible stomach pain, and lost 35 pounds in a month and underwent a laparoscopy with a very weak diagnosis of endometriosis (they did not find typical scarring, they just found one cyst on one fallopian tube and inflamed blood vessels in my pelvic cavity). A year later, I had a bizarre case of appendicitis where my white count never spiked, but my appendix looked swollen on the CT, so they removed it, but then I was hospitalized because my kidney function was impaired. So, from about 18-23, I would randomly wind up in the ER with horrific stomach pain, my weight would fluctuate, and I began to have horrible migraines.

The life was good from 24-27. I got married when I was 24, and I would say my marriage brought a lot of stability and peace to my life.

Then my husband and I decided to remodel our home. And, about 6 months after it was all done, the fatigue began. I was a soccer player last year, I had gotten down to a really good weight, I was eating healthy and could easily wake up at 5:30 and get an early start on my day. But, last May, I started not being able to get out of bed, and by August, I would wake up and be stiff and in pain in both my hands. With my positive ANA (even weak one), they first thought I had sera-negative RA (because I didn't have RF factor). Then the pain went into my feet and knees and it was painful to walk. I was treated with prednisone-felt better, but then 5 days after prednisone, I started having some bizarre neurologic symptoms with my walking. My legs felt like jelly. I underwent MRI's, lumbar punctures, the test where they send electric signals through your legs-and nothing siginificant came back accept for a slightly elevated protein level in my spinal fluid. I work with neurologists on MS research, and it was hard to disguise the fact that I was becoming a gimp at work, and one of them sent me to the ER.

My walking symptoms have come and gone, at first it was both legs, but now it is just my right leg that will collapse on me if I am overheated. I have one last test that my neurologist is doing (VEP), and I have very little hope that anyone is going to give me useful information. I appear to be cursed with weird symptoms and very little useful data from today's modern tests.

Then after the walking symptoms, began the malar rash when I would go out in the sun. The sun has always helped contribute to my migraines, but I use to never get burnt, and then all the sudden I started getting the red across my cheeks and nose, and my boss who is in autoimmune research and a rheumatologist suggested that it looked like a malar rash, when she saw me at work with it.

My latest problem has been the red blood cells and red blood cell casts that have shown up in my urine twice. And, last night I was in the ER, because I woke up at 3 am with incredible back pain and couldn't breathe. My clotting tests have not come back positive, but I have still been told to start taking a baby aspirin.

I have already applied for intermittant FMLA leave at work, and am at my witts end without knowing what is wrong with me. My first rheumatologist that I started seeing is pregnant and is going to be going on maternity leave. My neurologist and PCP thinks I'm nuts. My second opinion rheumatologist thinks I have a very strange case of lupus that just hasn't become apparent in blood work yet, and is concerned about my kidneys and possibility of throwing clots. I have had conversion disorder mentioned to me by one neurologist because they asked me about any unusual stressors in my life, and I was the victim of a sexual assault in college and my dad left my mom for another woman with the same year (when I was 18-19 years old). But, i went to therapy, and I took zoloft for a time, and eventually my therapist thought I was pretty well-adjusted, and I would say when I am not sick I am very happy person who has worked hard to have a good life and forgive her father and not dwell on the past. Before I started having problems with fatigue, my husband and I wanted to try to have a baby, because life was good, our house was remodeled and we both are established in our jobs. Now of course, we are holding off on trying to have kids, until I have some kind of confirmed plan back to health.

I am not looking for people on the website to diagnose me, I just needed to vent. I am sure that eventually things will get sorted out.

Most of the time I have noticed most lupus patients have a significantly higher ANA titer, and the second rheumie I went to, said that I would have been declared a lupus patient for sure, if my titer was higher. This not knowing whether I am crazy person who has conversion disorder or a person who has lupus and blood tests and other screenings haven't begun to give useful information is driving me crazy. I guess this could be worse. I have begun plaquenil. My work is being pretty understanding for the moment, aside from a few snippy co-workers. My UA is being checked again on monday and if there are still red blood cells and red blood cell casts, I guess I am going to a nephrologist for further testing. That scares the **** out of me. I like my kidneys and I want them to work. Kidney stones and UTI's were ruled out. Bacterial cultures were negative.

I should stop rambling, I think I am done now. I hope I haven't said too much in my thread. I would love for nothing more than to wake up without pain tomorrow, have no walking problems, and move on with my life, and begin planning things, like having kids and possibly going back to school to become a physician's assistant or somehow move further into autoimmune research, because currently autoimmune diseases and how they are managed is absurd, and I now have lots of sympathy for all of the autoimmune research patients I work with (primarily MS patients).

 

[Katharine]

Hello Kate and welcome

This is a great place when you do need to vent and we all do at times.

Lupus is a very varied, complex disease and it's not at all easy to get your head around it much of the time.

From this post and the other one you wrote in introductions, it sounds like you have a good rheumy who is taking you seriously. It's great that you have been started on treatment though, as I'm sure you know, it will take time for plaquenil to kick in fully.

You mentioned possibly feeling weird from pred. That is quite possible, especially at 40mg. Also, some people are more sensitive to it than others.

I am actually someone who is ANA negative (there are a few of us). It is true that an ANA of 1:40 would not usually be considered significant as many people can have a ANA like that for various reasons and not be ill at all.
I had various weird symptoms for around 9 years before finally being diagnosed (and treated). Getting a firm diagnosis without positive ANA can be very hard indeed but I was lucky to eventually be diagnosed through clinical signs and a positive skin biopsy.

I won't begin to try to comment on the possibility of conversion disorder - I don't really know enough about it do do so. The only thing I can say is that many of us have had traumatic experiences in life and we can often think we're pretty much alone in that but when you actually talk to lots of other people, you hear that almost everyone has something traumatic that has happened or is happening. I used to work in a situation where I heard a lot of very personal stories from a lot of people and it was a real eye opener on that one.

Anyway, I just wanted to say welcome - I'm usless on the more technical stuff and, to be honest, it is so complex that many doctors are too. You really need a rheumatologist who specialises in such things and that you can trust (it sounds like you ahve that). The rest is a question of time and sometimes trial and error with meds.

bye for now,
Katharine

 

[Joandublin]

Hi there Kate and welcome to the Forum. I wasnt sure which of your threads to reply to so I chose this one.

Im sorry to hear you are having so many confusing symptoms but it sounds like you are in the hands of a good rheumatologist who is willing to treat you for an autoimmune disorder and see if your symptoms improve. Thats a very good start Its important to get that appointment with the Nephrologist because, as you point out, our kidneys are very important.

By the way, I dont think you are insane at all. At least you certainly dont come across as insane It can be very difficult to diagnose autoimmune diseases in some people and your rheumy may be quite right in believing that your bloods will show positive soon enough. The important thing is to start the treatment and thats whats happening for you right now. You probably know that Plaquenil can take many months to take effect and sometimes the effect feels so subtle that we dont realise how much it is helping - until it is stopped that is.

The nucleolar ANA pattern is more commonly seen in people with scleroderma but of course, as with all things autoimmune, its not an absolute. Did you have any further antibody testing beyond the ANA? Often this type of testing can reveal more clearly what is going on.

Anyway, I just wanted to stop by and welcome you. I hope you get some answers soon and that your kidney problems can be resolve quickly.

Take good care
Joan:rose:

 

[cemc]

Hi Kate, just wanted to send a few hugs your way and hope that you do get some answers soon. I'm another one with loads of symptoms, a malar rash, and the only positive test is 1:40 nucleolar pattern ANA like you. I've also had the gastro stuff (from early 20's), and did finally get diagnosed with coeliac disease after probably 20 years of symptoms, so I do have at least one autoimmune disorder. Funnily enough, I also had my appendix out when they weren't quite sure about it (no temperature, blood count not showing a lot) and it did show mild inflammation, and also had some gynae workup with nothing coming of that either. I'm considerably older than you now (52) but still with no answers. Partly my fault - I never used to go to the doctor much when I was younger - just lived with a lot of aches and pains and stuff, because I knew with my family history (mum with RA, dad with spondylitis) I should expect to have aches. Wish I had tried to get it sorted earlier now though, so I do wish you well with your investigations. And don't worry about that conversion disorder thing. Neurologists often use that as a way to discharge you when they don't know what is going on. I'd stick with rheumies for the moment, and just go back to neurologist is someone else finds something significant neurological for them to check out. I've had CD suggested too, but after a while when you still have physical symptoms your docs will have to reconsider (as mine are now) and keep trying to look for answers.

 

[kate88]

Thanks for the nice responses

So, I think I was just really overwhelmed yesterday, because when I went and saw one of primary care physician's partners for a follow up visit after my ER visit in the wee hours of Friday, it was a really frustrating visit, and the doctor I saw is rather rude and condescending. This particular doctor is someone I have had run-in's with before, and he does not communicate test results to his patients accurately. (I think he may have been an ER doctor at one point in his career, and unless you have your guts and blood on the floor he does not have time for you.)

But, I am lucky, my rheumatologist is pretty awesome. She called me yesterday and she called me again today at home, to check on me. She's a pretty smart doctor who is incredibly thorough and leaves no stone unturned, and I am feeling fairly confident that I am in good hands, and answers will come.

I don't how you guys deal with this, but I have always been told that having a primary care physician is necessary and this person can coordinate between any specialists one might see. The normal PCP I see, is a nice guy, but a very busy one and there are several doctors in his practice. If one is busy, they usually put you in with someone else. The problem now is, I have a weird array of stuff going on, and I think seeing the same doctor is key.

When you guys were going through getting diagnosed, did you deal with your primary care physicians much, or did you just not bother with them and work with just a rheumatologist?

I have been tested for other antibodies, and those antibodies have been negative. Anti-ssDNA and some others. Even though those antibodies have been negative, I am still being told I might have lupus, which again, very confusing. I am assuming that means if symptoms persist or other evidence is found, I will be re-tested. I know that with RA, sometimes patients test positive for those antibodies or RF factor a year after they have been going to doctors trying to figure out why they are sick.

So, it's entirely possible I don't have lupus and I have something else, but with the malar rash, the weird UA results and the joint pain, l am not going to be shocked if diagnosed with lupus. I am just hoping that regardless of what it is, that medications will work and I will feel better.

I think that a lot of health issues that affect women have not been researched as much as they should, and I think that there has always been some bias in the medical profession. Because women are generally more emotional then men, I think that doctors will right off womens health issues as reactions to stress, suggesting that women have poor coping skills, which I believe is a frustrating and dangerous thing to do.

In the meantime, looks like my rheumatologist is going to have me undergo an echocardiogram (because I am still sitting around at home today feeling like someone is sitting down on my lungs all the time), to try to find out why I had chest pain that woke me up in the middle of the night early Friday, re-test my urine, and there is some other blood test that is being done, because certain weird things still happen to me while I am on prednisone. On prednisone, the joint pain is better, and I generally have way more energy, but walking problems have arose on and off prednisone and the whole chest pain thing is weird. I have done some international travel, and my rheumatologist wants to make sure I don't have this weird bug that can apparently reek havoc in people on steroids, but the rest of the time is fairly dormant. I can't remember the name exactly, but it sounded like spungiformi (I am sure that is grossly mispelled.) I have been in Thailand and Korea, where I was in some National Parks hiking in 2004 and 2008. That maybe a wild goose chase that my doctor is undergoing, or who knows, maybe it would explain somethings, either way, I have already had needles in my arm a bunch of times already, one more blood draw isn't going to kill me. I am beginning to feel like I am on an episode of House (TV show).

Now for the preparation of getting ready to cook Christmas dinner. I am little nervous about preparing my house for my mother and step-father to come, and my in-laws are showing up as well. Fortunately they are not all sleeping here. Just my mom and step-dad. I have decided to keep most of my health problems to myself. They generally know that I am sick and have not been myself, but I am not going to say the word Lupus to family, because I don't want to start a panic and it could be incorrect. I may actually talk to my mom about helping me a little more with Christmas dinner than I originally intended. I don't see myself feeling a hundred percent that soon.

Anyway, thanks for the kind words. If people have thoughts on PCP's vs rheumatologists, and how they manage their doctors, I am all ears. I know my PCP can't diagnose me, but if i am going to bother with them, I need to have them accurately communicate information between other doctors I might see, and I am not convinced I am seeing the right guy for that.

 

[Maia]

You sound to me like a very level headed person, and sound like you are right on top of things to me! Sounds like you have met a very thorough rheumy and that is a blessing.

As for PCP vs rheumy, I have much the same problem as you. My PCP is VERY busy and I can't get into see her until about 3 months after I request an appointment. So I would often see other doctors while ill with one symptom after another... and found that extremely frustrating. In general, I now tend to only go to my PCP/GP for my yearly physical and will just go to the PA or a nurse practitioner for things like sinus and ear infections. Anything that is likely to be due to lupus I will run by my rheumatologist or her PA.

Depending on where you live, and where you have vacationed, I hope tick borne illness has been investigated as well. They can cause a lot of symptoms similar to yours too, and possibly this is what your doctor is concerned about/testing you for already since some symptoms rebounded while on prednisone.

Good luck with everything and I hope you get some answers soon.

 

[ALWIN]

Hello Kate

I have been dianosed with Hughes (antiphospholid syndrone), and Sjogrens after positive tests. I have also been diagnosed with 'probable SLE' by Professor Hughes' London Bridge team. I do not have thes sort of high ANA blood results people are looking for for a 'definite' diangnosis of SLE. I have been given the diagnosis on a collection of symptoms. Unfortunately there is a big overlap with autoimmune disorders, as I am sure you know.

Even so, I take Plaquenil and other drugs which make me feel a little better and definitely more able to continue to function in work and with my family. I think those of us who do not get absolutely positive blood results should hang on to the thought that perhaps we are lucky and do not have SLE, whilst being sure to get the right kind of treatment if we are at risk. Apparently my results were a little high, but 'possibly normal for me'. What do you do?

My migraines and achy joints are under control, but they COULD have been caused by Antiphospholips Syndrone as far as I can see. For me, aspirin, a minor dose of a betablocker (cured my migraines), plaquenil, and pain killers with yoga to stop me getting migraines, confusion, joint/ muscle pain and stiffness, and have therefore helped a great deal. I no longer have a lumpy rash on my face. I go pink and lumpy in the sun fast. I get knackered if I stay out in it. It's a problem because I am a gardener.

It is frustrating trying to get to the truth. I think it IS important to keep seeing the same GP. If you have different doctors each time you start at the beginning each time and that's a drag cos their first reaction can be depression is perhaps the number 1 problem. We can get depressed, and that is fair enough, but it is NOT necessarily the number 1 problem.

I have more energy, but still get bouts of tiredness leading me to bed for a few days at a time, and a few weeks of struggling. But I come out of it. Every time. I am not struggling every day for months as some people do. I am very fortunate.

This site helped me to go seek answers. I did. I got treatment. Now I am less concerned about true answers and more concerned with my gut instincts and whether or not recommended treatment helps me. So far it does. I am more confident and less inclined to justify myself to people.

I am what I am, and do my best to keep myself well. Unfortunately, that has involved a certain amount of humiliation in the face of a few doctors. There are open-minded, hard working ones out there, though.

So go with your instincts to help yourself feel better and ignore the people who seem to think you are insane.

It can take a long time.

I wish you luck.

Take care.

(PS My Christmas has already begun, so I've had a few glasses of Baileys - please ingore spelling mistakes!!!)

 

[kate88]

Hmm..interesting about the antiphospolipid syndrome

Yea, I think that my rheumatologist is going to be my main person who helps, and then whether or not I look for a PCP who is a bit more attentive, I haven't decided. My rheumatologist is at the hospital that I work at in Seattle. And, generally speaking I notice a different between general practice doctors at big hospitals in Seattle vs suburbian doctors. Given the collection of weird symptoms it might make sense to keep my doctors under the same institution. I don't want to much time to pass, with bad communication. And, I have taken to keeping notes in a book, so that I have got things straight.

Yea, you know maybe I will be one of those people who end up with a very loose diagnosis for the rest of my life, and but still get treatment that makes life better. I think being a research coordinator, I like dealing in absolutes, and I guess I may or may not have that option. But, if my quality of life improves with proper treatment, I will be happy with that.

Just, curious-Alwin.....with the antiphospholipid syndrome- did you ever have a pulmonary embolism (blood clot in the lung), or did you just have blood tests that led your physicians to that diagnosis?

Currently, I am sitting around feeling my lungs are in a vice, and occasionally I feel lightheaded. If it gets real bad, I will seek medical advice, but currently, I am just taking it easy. I am suppose to have a test where they take a picture of my heart tomorrow, trying to see if I have clot somewhere that causing the chest pain and breathing problems.

Meanwhile, I am with friends having a (we got snowed in party in Seattle). We have a foot of snow or more, which does not happen in Seattle Washington, except for maybe every 10 or 15 years.

Merry Christmas to all, and hears to good health soon for anyone not feeling well at the moment.

 

[ALWIN]

Hi Kate

The antiphospholipid syndrome was picked up during a range of blood tests after a nice neurologist ruled out MS.

I had a collection of symptoms that vaguely might have pointed to MS, and that kick started proper investigations.

I never had a PE or even a DVT, and whilst I did have a failed pregnancy, i was told that was a hydatidiform mole. I had extra ordinarily high human gonadotrophin levels for a long time after the 'pregnancy' failed. So no clotting so far as I know. 3 other perfectly healthy, easy pregnancies.

I have always (since teens) suffered with migraines, which i had learned to manage the best way I could,but had never found a 'cure'. They had begun to invlove pins and needles in my fingers as well as visual disturbances, so you can see why the MS thing was investigated. It did not occur to me you could get pins and needles with migraine and I had not realised migraine symptoms and frequency could change / fluctuate with age. I was not always in pain when I got the pins and needles, so made absolutely no connection and thought I was being fobbed off to be honest .... until the treatment removed ALL my headaches and visual disturbances, etc. Well - nearly all - get them very, very rarely now. Ws 3-4 times a week and eachcould last days or only hours.

I do get chest pins and thoracic back pain, but that is assocaited with thoracic arthritis and something to do with the rhomboid muscles going into spasm. That one is FAB - when that happens I cannot catch my breath, but it wears off within a few minutes cos I go very, very STILL whislt focussing on breathing gently. I look dead funny according to others. Hurts like heck though, thank you very much!

The problem is - just because you have one thing it does not mean you are immune to others. But is is great to have a thorough health MOT ... your heart test, etc.

The other problem is we all want it to be black and white cos we want to manage our health.

It is awful not feeling in control because you don't have clear cut answers. Especially if you have an enquiring mind.

I certainly do get 'fuddled' and a bit light headed at times, but not like i did before treatment.

Merry Chrismas, by the way!

I am off to bed before I expire. We broke our telephone and internet cable thingumy and have only just managed to caggle it all back together so been catching up on e-mails quick sharp.

I wish you well in all your tests and hope you get answers.