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jleigh
03-25-2009, 06:18 PM
Hi, everyone! I'm really glad I found this site out there-- I've been looking for answers, so I hope at least some of you can point me in the right direction== I know most of us aren't doctors, but sometimes, the info provided on forums like this is more helpful.. Here we go... about four months ago, I started having migraine headaches... went to my doctor, who referred me to a neurologist.. had an MRI.. showed a white spot.. (abnormal MRI).. my neuro wanted to do some labs on me to make sure all my chem profiles were in order, so he checked my CBC, ANA, SSA, SSB, etc.. well, as far as I know, the only thing that came back positive (1:640) was my ANA. That test was done a month ago. During my follow-up, about a week ago, he checked my ANA and other things (thyroid, metabolic profile) again... my ANA was 1:640, speckled AND homogenous (how does THAT happen?!) and my potassium was a little low (3.2). Yesterday, I had an appointment with a rheumatologist to see about Lupus.. I don't have the "major" symptoms of lupus SLE (butterfly rash or Raynauds.. .although my finger NAILS do, in fact, turn blue/purple when I'm cold, and I'm ALWAYS cold, but my thyroid levels are fine..) So, at the end of our appointment, my rheumy decided to order a slew of more blood tests (yay.. I finally found a good doc!) to check for ANA again, SSA, SSB, complements, antithrombins (something she wants to check with my migraines), and some other things.. she also did a urinalysis and said that in a month, on our follow-up, she'd like to do a shirmer's test... Now.. here are my symptoms .. and by the way, my mother has psoriatic arthritis (an autoimmune disease) and my great-grandmother had psoriasis as well.

My symptoms:
-occasional joint pain (in the knee; back)
-dry eyes; my eyes are sensitive to bright lights and I am always having to change out my contacts b/c they get so dry
-itchy skin (this is recent... happens especially after showers)-- rash once in the sunlight when i laid out for about an hour.. chest turned red, bumpy, and itchy
-mouth ulcers, but on gums, not on roof of mouth or tongue
-dry/chapped lips
-vaginal dryness (this has gone on now for at least a few years, but it's gotten worse... painful sex, and the lubes out there make me burn?)
-trouble remembering little things lately (like going to make coffee, putting a filter in, and then going back into the pantry to get ANOTHER filter!)
-difficulty concentrating sometimes/fogginess
-RECENT (maybe the past three weeks) tingling/numbness in fingers and heels (this happens every day, but doesn't last all day long-- it goes on and off... at the rheumy yesterday, during the exam, she used this metal thingy on my heels.. when she did it on my left heel, it felt differently than on my right heel)
-cavities-- i don't eat any candy, either!!!!
-lots of recent upper respiratory infections (3 in 5 months)
-continuously enlarged lymph node on my neck ("cervical lymph node") for about 3 years now-- not painful, but it's not going away at all... i also had one under my armpit about two years ago, but had it removed because it was painful where my bra was rubbing it... it was benign
-previous IBS
-recent weird incident: i work out alot, so it's not like i don't use my muscles: i was walking down the pyramids in Mexico, and my quadriceps gave out on me.. i could barely walk for about a week...

I just want to find out what's going on.. I'm tired of getting sick and tired of being tired all the time.. I used to never get sick, and now i've had a respiratory thing going on for 3 times in 5 months... not to mention that the rheumy said it will take the university/hospital a month to get my labs back? has anyone else been told this? why is this? the rheumy doesn't want to rule out or rule "in" lupus yet-- she says that two positive ANA tests mean a false positive isn't possible (so why is she ordering another ANA test?), but she said although i don't show the major symptoms yet (the butterfly rash and the raynauds.. -- question-- if my finger nails are turning blue/purple, is that raynauds?), that i could have lupus, but that it might not be "full blown" yet...

Thanks for all those who respond.. i really could use the responses! ;D

chas
03-25-2009, 06:39 PM
Sounds like your rheumie is thorough and will get to the end of it..and yes it sounds like you do have some sort of autoimmune disorder. Take heart that once they find it you can start managing it and all is well. Don't know anything about the white spot in MRI however but there are some people here and their experiences will help you identify it. Good luck.:wacko:

chas
03-25-2009, 06:40 PM
Okay "all is well" was accidentally dismissive, I meant that knowledge helps you cope better with things.:huh:

mountaindreamer
03-25-2009, 08:02 PM
hi jleigh,

welcome to the forum. i hope you get all of your questiones answered, and that you find new friends here. your symptoms sound like it could be lupus, and i agree with chas, sounds like you have a thorough rheumy. i tested positive for 13 years for being diagnosed. the diagnosis process can be extremely frustrating.

you obviously do a great job of keeping track of your symptoms. this ist will be very advantageous next time you go to dr.

i have never heard of lab results taking a month to return, but nothing surprises me anymore.

sounds like you could be suffering from raynauds,

my mouth issues are usually chapped lips, and rawness on inside of lips, i occassionally get soreness on tip of tongue. you will find many people with similar symptoms, but lupus can be very evasive, and individual in its attacks.

take care, hope you enjoy our group. keep up the good work.

sick n tired
03-26-2009, 10:03 AM
Hey jleigh,

It sure looks like you have something that is autoimmune...getting a lupus diagnosis has to do with the criteria and some docs will say blood tests are primary, also. (There are sticky's that are extremely informative to that point)

You know some of the symptoms sounds like Sjogrens(I am not anything medical)...I am having a workup for that...dry eyes, mouth...cavities, dry skin...etc...I even have vaginal dryness (sorry Rob or other men reading this) which is another symptom. What you will find when you are reading, is some of those could be the same for lupus, too.

So when is your next Rheumy's appt? I will be interested to know what he says.

Blessings,
Karen

Saysusie
03-26-2009, 12:00 PM
I have to agree, it certainly sounds as if you have some form of auto-immune/connective tissue illness happening. From the tests that you described, it sounds as if your doctors are doing all that they can in order to determine which disease you may be presenting with.
Diagnosing auto-immune diseases is very, very difficult as these illnesses evolve over time and their symptoms are so closely related to one another. Also, lab work tends to change (high values this month can come back negative next month). Also, these diseases tend to go through periods of relapse and remission (hence, the changes in lab work that occurs too often).
There are many members here who are, like you, waiting for a definitive diagnosis so that they can know exactly what is going on. Some of us have gotten that diagnosis and others are still in limbo. Then there are those who are diagnosed with undifferentiated connective tissue disease (because none of the symptoms evolve enough to diagnose any one disease) and others are diagnosed with Mixed connective tissue disease (meaning they have three specific over-lapping diseases) and yet others are diagnosed with not just one, but 2,3 ,4 and even 5 or 6 separate but co-existing diseases!
You are lucky to have found a good doctor who, like you, wants to get to the bottom of what is going on. We are also here to help you muddle through this process in any way that we can. But, please know that the uncertainty can go on for months to a year. In the meantime, a good doctor (like yours) will still prescribe treatment for your symptoms so that you can try to maintain some reasonable normalcy. I wish you the very best and we are always here to help!

Peace and Blessings
Namaste
Saysusie

jleigh
03-26-2009, 12:52 PM
Thanks for the info.. I was wondering if it's Sjogrens, as well.. in fact, my rheumy mentioned that she wants to do a Shirmers test on my next visit, which isn't until a month from now -- on April 29th! She said my labs won't be ready until then.. have you had this experience as well? When my neuro did the ANA test, my results were back within three days... this just sounds kind of weird. I'll look at the sticky posts, too...

Thanks :o)

pamjw
03-26-2009, 12:56 PM
Ihope you get your answers soon, it is so hard waiting
for a diagnosis, but sounds like you have a good Dr.
You wouldnt want your doc to rush a diagnosis, then he could change his mind later. That is frustrating.
Welcome to the group

sick n tired
03-26-2009, 02:44 PM
April 29...grrr...waiting can be the pits...

jleigh
03-26-2009, 05:48 PM
April 29...grrr...waiting can be the pits...

Yep! Did anyone else here have to wait that long? Like I said, when my neuro tested my ANA, it only took about 3 days!!

KathyW1958
04-01-2009, 01:18 PM
Hi Jleigh,
Welcome to the forum. I am glad that you found us here. My name is Kathy and I have SLE Lupus and Sjogrens as well. It sounds like you have a good doctor. It does sound like you have at the very least Sjogrens Syndrome. I hope that you get the answers when you see the doctor at the end of this month. Please post and let us all know what the doctor decides ok.

Hugs,
Kathy