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Our story is long (I will try and get to the point, but I am a chatter box, sorry) and the ride has been bumpy over the years (sadly it is so very much like so many stories I have read). My wife has been dealing with what she though was normal issues for years and years. 4 years ago she started having numbness in her arms and legs, she would fall down when walking and would say that her leg just would not work. This drove us to the doctors. they chased an MS Dx for a year before giving up and saying that it was not MS and the it was likely Fibro and we needed to see a Rhumatologist ... well after a year of being told it was in her head, negative tests, inconclusive tests, MRIs, on and on, she tossed her hands up and decided to just deal with it.
We recently just had our 3rd child (5mo girl, 6 year boy, 9 year boy) and during the pregnancy she was having heart beat issues, rapid beat, etc. At the time it was dismissed as hormones of pregnancy. Well Pregnancy is over and it continues...we were at the doc for something unrelated and she mentioned it again. Well out came the EKG (test was normal) and blood work. The blood work came back with low White Cells, low Platele Platelets tts, thyroid was off (she is on a med for that, adjusted). Those tests were followed up with more tests. The second round blood work was back to normal, but the results that came back were "possible lupus" and we are headed to a rhumatologist next week. So we got a copy in hand now and this is what we see:
ANA positive Pattern DUAL
1:640 Speckled
1:640 homogeneous
DS anti-DNA Positive (score 11)
All of the reading I am doing, these number are both troubling, alone they may be explained away, but together it seems we are dealing with some Auto-immune issue. so here is a highlight list of symptoms: faint facial rash, unexplained and consistent tooth pain, Joint pain (hips, knees, ankles, wrist, fingers, neck, shoulder) Muscle pain (thigh), migraines, Brain fog (can not complete sentences, forgetful, can't remember words, etc), issues with digestive tract, fatigue, rapid heart beat, numbness (arms and legs), I could go on, but you get the picture.
Currently she deals with it by taking Advil, napping when she can, and just goes through her day with out complaining. she is an amazingly strong 35 year old woman who I plan on spending my life with, and I want that to be a long life. We are excited that we may have an explanation and may get a better treatment program that will hopefully allow her a much better quality of life. We are scared of side effects of drugs, a Neuro gave her a fibro drug 3 years ago that made her so tired she threw it away and gave up on the doctors...that won't happen again, if I can prevent it.
As a side note, her mother recently got a Dx of Mixed Connective Tissue Disease. Her poor mom is suffering much worse that my wife, and I hope that us getting close to a Dx 22 years earlier in life will mean a better prognosis.
any way, hello. Do these test scores seem as big a harbang harbinger as I am reading them as? Or am I putting to much into the tests? We are going to escape to Disney World this weekend, to try and get this out of our minds before our Wed morning Doctor appointment.
Thanks,
Bryan
We recently just had our 3rd child (5mo girl, 6 year boy, 9 year boy) and during the pregnancy she was having heart beat issues, rapid beat, etc. At the time it was dismissed as hormones of pregnancy. Well Pregnancy is over and it continues...we were at the doc for something unrelated and she mentioned it again. Well out came the EKG (test was normal) and blood work. The blood work came back with low White Cells, low Platele Platelets tts, thyroid was off (she is on a med for that, adjusted). Those tests were followed up with more tests. The second round blood work was back to normal, but the results that came back were "possible lupus" and we are headed to a rhumatologist next week. So we got a copy in hand now and this is what we see:
ANA positive Pattern DUAL
1:640 Speckled
1:640 homogeneous
DS anti-DNA Positive (score 11)
All of the reading I am doing, these number are both troubling, alone they may be explained away, but together it seems we are dealing with some Auto-immune issue. so here is a highlight list of symptoms: faint facial rash, unexplained and consistent tooth pain, Joint pain (hips, knees, ankles, wrist, fingers, neck, shoulder) Muscle pain (thigh), migraines, Brain fog (can not complete sentences, forgetful, can't remember words, etc), issues with digestive tract, fatigue, rapid heart beat, numbness (arms and legs), I could go on, but you get the picture.
Currently she deals with it by taking Advil, napping when she can, and just goes through her day with out complaining. she is an amazingly strong 35 year old woman who I plan on spending my life with, and I want that to be a long life. We are excited that we may have an explanation and may get a better treatment program that will hopefully allow her a much better quality of life. We are scared of side effects of drugs, a Neuro gave her a fibro drug 3 years ago that made her so tired she threw it away and gave up on the doctors...that won't happen again, if I can prevent it.
As a side note, her mother recently got a Dx of Mixed Connective Tissue Disease. Her poor mom is suffering much worse that my wife, and I hope that us getting close to a Dx 22 years earlier in life will mean a better prognosis.
any way, hello. Do these test scores seem as big a harbang harbinger as I am reading them as? Or am I putting to much into the tests? We are going to escape to Disney World this weekend, to try and get this out of our minds before our Wed morning Doctor appointment.
Thanks,
Bryan
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
nausea
Tired - fatigue - lethargic
Sore Muscles (bilateral - neck, shoulders, thighs)
Sore joints (jaw, knees, ankles, hips, thumb, knuckles, Top spine)
Tooth Pain
headaches - Migraines,
Vision - double (tired, has to focus to not double)
Anxious - Sleepless nights filled with worry
Rapid mood swings
HARD heart beat - with nauseous and light headed , feel blood pumping though veins in chest (some times rapid)
IBS
Glands (above hair line neck - left always swollen, right comes and goes)
losing hair
Muscle twitching (stomach, body twitches)
Tingling/numbness hands feet (been a while)
Left leg "goes out" won't bear weight causing fall
Boyle/large pimple like sores on rear and thighs
Red dots on skin come and go (tiny blood blisters)
Lots of neck pain (radiates into arms)
Skin - Dry, hands cracking
face in the last year has been getting more red (Faint butterfly rash)
Dry mouth at night (craves water to cure dryness)
Dry eyes (contacts tough to remove)
Night sweats
Memory - Brain fog (finding words), Difficulty concentrating , what did I come here to get, real memory problems
eyes - itch, photo-sensitivity
Breathing - Pain with deep breaths
Claustrophobic
Reduced sex drive
Depression
Bruises easy
Oh nelly it will be an interesting appointment.
Sending Peace,Love, and Good Health to Your Wife and You
So he came in, asked for the blood work results, glanced at them, literally, 1 second, then asked her some questions. Did a physical exam, asked a couple more questions and filled out lab work request form. Never did he ask if there was anything else we wanted to talk about. Tracy asked, if that was it, what did he think.
He said well your tenderness is typical of Fibro let me get you a brochure, and he ran out of the office. when he returned he handed it to her said get the blood work done and return in 2 weeks. He turned to the door and bolted... HOLD ON! There are other concerns we have here in addition to that which you asked about ... so I quickly hit a few of the items on the list we made. He seemed put off that we wanted to talk more, but listened. When I mentioned Sores or her rear, additional detail about her memory and her tooth pain, he perked up, examined her sores (or the scars of old since there are not any currently there) and ordered a couple more blood tests and made additional notes in the chart.
Here is a list of tests he ordered:
Hepatic function panel
UA, complete reflex to culture
Ccp ab igg
Complete c3c, c4c
Ana ifa w/reflexes
Anti-dsdna, rfx, tither
Ra diag panel
Sed rate by mod west
Crp
Celiac disease panel
Inflammatory bowel disease panel
The Dx code on the test form was for:
Other and unspecified nonspecific immunological findings
So Tracy is getting the blood drawn now. She says today is one of the worst days she has had in a while (so if it is a flare, we may get the antibody tests to show that). I asked her to be sure the results are sent to the ordering doctor and her Primary Care doctor so that we can get a copy easily to take to the other Rhumey we have an appointment with at the end of March.
For the appointment in 2 weeks I will bring a print out of the symptom list and give that to him to look over. That way he will not have to talk, until he has questions about the list.
This is why we gave up after they ruled out MS ... Doctors suck!
The plan going forward
Glad you all made it to the appt... i SO understand how frustrating it is when you feel as though you are not getting the appropriate time you deserve to voice your concerns and questions! It does sound like he ran an informative panel of tests, which is good. When will the tests be ready? Surely before 2 weeks? I have found that most labs.. well .. at least through Quest Diagnostics are completed within 24 - 48 hours.. they have a fast turnaround time. I always call the lab direct a couple of days after taking the tests to see if the labs are in yet.. of course the labs cannot reveal your results, but they can at least let you know when they have been completed =) . I have learned that you have to be very bold and direct with these doctors, really. I would ask to come in for a sooner appt - as soon as you know the labs have been completed and the results have been received by the ordering doctors' office. Good luck to you.. I really hope these lab results will be a step in the right direction!!
Jennifer