Which symptoms led to your diagnosis? ANA 1:640, polyneuropathy, migraines, weird neurological symptoms... so many questions!
I would love to hear from anyone who wants to share how their doctor arrived at a firm diagnosis of lupus. I am 29, in good health until recently, thin, a non-smoker, and I have 3 young children. I just had an appt with my neurologist who had run tests to figure out why I am experiencing some odd neurological symptoms. My brain/spine MRI was normal as was an EEG. My ANA was 1:640 which he called "weakly positive" though I've since read that it's quite high. The ANA pattern was speckled. I also had low iron stores (ferritin 24) though my blood iron levels were normal. And I had high blood glucose (HGA1C of 0.060) on a random test.
So, I know that the ANA test doesn't necessarily mean I have lupus, but it's a good possibility, right? When I look at the diagnostic criteria (those 11 symptoms of which you should have at least 4) I only have 2 or 3. I have no skin symptoms or rashes and am not sensitive to sunlight. No hair loss. I do have mouth ulcers.
I have a 3-month history of vertigo, tingling in various spots, polyneuropathy in my feet which includes many weird sensations of tingling, numbness, burning, itching, extreme cold (with reduced sensitivity to vibration and temperature on the neuro exam), weakness in my legs and left arm, memory and concentration problems, muscle ache in my left thigh (fairly painful), joint pain in the top knuckles of my fingers (no swelling or redness), black spots that appear on those knuckles, migraines (with head pain, tingling in face, and blurriness in eye), fatigue, pain in my ribs and back, cheekbone and jaw (all on the left side only), etc. None of the symptoms are constant - they all come and go, but I have some every day.
I also have had 4 acute attacks lasting a few hours each where I get intense leg tingling, start to get shaky and nauseous, have diarrhea, feel weak, and can't think clearly or express myself. Sometimes I then get a bad headache or I'm just very tired for a day afterwards.
So, the neuro is referring me to a rheumatologist but said it will take several months to get an appointment. He's also referring to a vascular surgeon in case the problem with my feet is actually circulatory. And also wants a lumbar spine MRI in case it's a compressed nerve. He said to follow up on diabetes testing with my family doctor. He is testing my blood for Anti ds DNA antibodies now as well as Creatine and LD because of my muscle pain. And Lyme Disease because I asked! I got a tick bite years ago and know Lyme can mimic lupus in some cases.
So, am I on the right track? Is there anything else I should be doing? How were you all diagnosed?
Sorry you're going through all this. I think the waiting, and not know what's wrong can be the worst part.
In my case, I was very sick for over a year before I was finally grudgingly diagnosed. I had all sorts of symptoms: severe fatigue, severe intestinal cramps, nausea, diarrhea, weight loss (went from 135lb down to 105lbs), severe joint pains (shoulders and hips. Even had surgery on one shoulder joint), muscle pains, flu-like symptoms, low-grade fever (100.4F) for months at a time, bizarre neurological problems (balance, vertigo, lost-time, brain-fog, paranoia, cold patches on my leg), breathing difficulties, etc., etc., etc.
Went to every specialist there was. No one could figure out what was wrong (though I did discover I was hypothyroid, had osteoporosis, and had an aortic aneurysm). I was tested for Lupus three different times, and told I definitely did not have Lupus.
Finally, after more than a year of illness, I decided to have my own tests run, after standing out in the sun for 15 minutes before the tests were run (the sun can make me sick), and a came up with a positive ANA.
I took these results to a Rheumatologist and he said my symptoms did not sound like Lupus. He wrote out an order for blood tests, and both my ANA and Anti-Sm came up positive. He ran them again a month later, using a different Lab, and they were positive again. He grudgingly, after 3 more months, diagnosed me with Lupus.
So, prepare yourself for the long battle. It can be very difficult to diagnose these things, and at least in my experience, the doctors wanted to dismiss my symptoms (and me) as quickly as possible. I had to keep on going back again and again with my complaints. I also found out that negative test results mean nothing.
I hope you get to feeling better as soon as possible.
I'm sorry to hear that you went through such a lengthy ordeal before getting a diagnosis. I'm pretty sure I'm in for the same sort of battle!
I went to the rheumatologist this morning and while he didn't dismiss my symptoms, he said he couldn't make a diagnosis at this point. He believes I most likely have a connective tissue disease, but can't say yet which one. Along with the positive ANA I had negative results for the ENA panel antibodies (like anti-SM, anti-Ro, anti-La, etc.) The only one not tested for was anti-ds DNA so they are running that now. They're also doing kidney function tests and tests for antiphospholipid antibodies. He actually seemed to think that APS was likely based on the circulation problems I have in my feet.
So it's frustrating, but at least the rheumatologist and neurologist are willing to keep seeing me until they figure out what's happening! I really do hate the "wait and see" approach -- let's wait until your symptoms get more severe and disabling!
My problem started with my intestines first. Went through every test. The doc thinks it IBS but could not tell me for sure. Started having bladder problems about the same time. Bunch of tests there. Then the nuro. Legs felt like I was being shocked, tingling up and down. Toes and hands tingling. back and next pain. It all just started down hill. I have gone to about ten doctors. One GI doctor tested my points for FM. Every point was very tender. My primary came right out and said he did not believe in FM condition. I thought, GREAT. I have had about 4 other different kids of specialists tell me, You have FM. It has been two years, and other things that are going on, are being ruled out, like my headaches, memory issues, and vision imparement. I am sure, when all is said and down, will be linked to FM.. I was in a car accident. The doc says trama will could bring on FM. My RA doctor is the one I see now, just for the FM. I am persuing SSD now. I need my mind and eyes to be able to work. So, to answer your question. The IBS, which started first. Then the all over pain took me to the RA doc. Now seeing Nuro for other. What I have found, on other Site posts, Low vitamin D and B 12 is also linked to FM.. Get them checked if you have not already!
I just sent this diatribe to two other undiagnosed people on this forum. But it may be helpful, and I do so hope it is helpful to you and to them:
For about a year and a half I was told I "only had Fibroymyalgia" as if that weren't bad enough, because it actually is horrible, the way you feel. And it still is for me.
Anyway, about a year and a half later I had a really bad time breathing and finally went to the ER. At this time I worked for doctors, believe it or not, and the one on call that day sent me home saying I had pneumonia, and to stay in bed and rest for three days.
I went back to work after three days (remember I was working for a group of physicians at this time) and they all said "Oh, you look really much, much better", to which I replied, "Well I really don't feel at all much, much better."
The very next weekend I was back in the ER and thankfully another one of the doctors I worked for was on call and she took one look at me and sent me straight up to the ICU and called a thoracic (spell?) surgeon who proceeded to tell me that I needed an operation to relieve the fluids around my heart and lungs, like yesterday.
Soooooo, that's what happened, I had a pericardial window done on me. After I was out of the ICU and into a regular room, they sent in a great Rheumatologist and he said "Well, it's official, you have lupus, and not the "mild" type either, but the systemic one."
Like you, I didn't want this disease, but it's better to know one's enemies than not. I do also have fibromyalgia as well, so they weren't wrong on that score.
Long, long, story, but trying to be short and informative; I had tests run over and over and nothing showed that I had lupus, no tests at all even suggested such a thing. It's a very difficult disease to diagnose. With me, I'd go into my new Rheumy's office feeling totally horrible, and the tests would say I was doing better. Then other times I would go in and I'd feel half way decent, yet on the next visit I'd be told that my blood work showed that I was having a flare on my last visit.
As far as lupus and I go, I feel like it runs and hides quite a bit. Until the pericardial window and all the tests were sky high, and some bottoming out, I'd probably never have been diagnosed.
So, try to keep in mind that I've truly found that with lupus, it can hide, and hide for quite some time. Yet, in the meantime your body feels like you've been beaten all over with a baseball bat, well that's lupus and fibromyalgia. Then, boom, suddenly it shows up, but never when you'd expect it too, like when you're feeling like total caca!!!
Good Luck, with your journey, I know how difficult and frustrating it all can be. Just also keep in mind that you and you alone are the only one who knows your own body. Nobody else has a clue.
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