Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
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
Anyway, seriously, I'm sorry you and your family are going through this. We do understand here, and it's hard to accept that we have something wrong with us. It took me many years to get DX's that amounted to Fibromyalgia, Sjogrens & Lupus.
I used to take advil, rather ibuprophen, but this wasn't doing it for the pain. I tried vicaden, also did not work. I now take Tramadol and try to only take that once a day, but it really works for me. But I do have to add, that I also take Lyrica and Plaquenil every day too. I just need the tramadol on top of that.
Hopefully your wife can take care of pain naturally, but most people that have Lupus seem to start on Plaquenil. It is supposed to help with the progression of the disease, so she may at least want to consider taking this, if the doctor suggests it.
Have fun at Disney and best wishes to your wife.
I hope you enjoy your trip to Disney World. It's good to try and keep doing the things you love to do. Just keep in mind that there may come a time when your wife may not be able to do things that are very exhausting. So enjoy life one day at a time and do all the things you like. Not meaning to sound like a kill joy, but these illnesses can be difficult to live with.
I only have a second to type but PLEASE DEMAND that your wife is tested for Antiphospholipid disease by using the Beta 2 Glycoprotein blood test. This is not a common test used for APS but it is the Most accurate and APS caused me ALL the same symptoms plus, that your wife has been experiencing. It can affect every part of a persons body and can mimic lupus to a T. EVEN IF the rheumy laughs you off and says that she doesnt have this because she has not had a blood clot (btw, has she ever miscarried?) you DO NOT have to clot to have APS. Some of the main symptoms of it other then clotting are severe headaches/migrains, muscle/joint pain, and problems during pregnancy. This disease is treated the same as lupus (Plaquenil is the most used drug) but also mild blood thinners and folic acid are also used. This can be a serious auto immune disease and needs to be ruled out by the beta 2 glycoprotein test. MANY women are diagnosed with MS as it also mimics that disease when they actually have APS. Blood work can be like hitting the lottery with AI disease's sometimes. Thyroid issues can also mimic lupus symptoms so is she seeing a good endocrinologist? Her meds for her thyroid may not be at the proper level for her. There is so much I could tell you about disease's but dont have the time as toddler needs to eat. Please feel free to message me if you have any questions. ALSO, its possible that her tooth pain and headaches are from TMJ and can be helped with wearing a nightguard at night. I have this and when I dont wear my nightguard I can absolutely tell a difference. It is from clenching/grinding your teeth while sleeping. She may not even know she is doing it but a good dentist can tell by looking at her teeth and her symptoms. Gotta run. She is lucky to have such a wonderful husband like you. Keep us posted and ask us anything. Get copies of ALL her blood work and you can always ask us if she was given all the ones necessary or what they mean. Lastly, Mixed connective tissue disease can mimic lupus as well and is also treated with Plaquenil. Ask the rheumy about a trial of this drug. Its slow acting but if she suffers from a mixed connective tissue disease (which may not be lupus at this time) Plaquenil will make a difference in her symptoms within 6 months. This can confirm that she does have a mixed conn. tissue disease which is causing inflamation/symptoms.
Sorry for the mess of a message. I know Im all over the place.
Hugs
Melissa
Basically the doctors that I've come across with don't care. They strictly go by blood work results. I too have been labeled with possible Fibro, but yet I have other symptoms that are not consistent with Fibro. I too get not just the pain in my knees, hips, ankles, ect. but I also get the muscle pain my thighs. I get a lot of muscle twitching which drives me nuts. Plus I too have a history of Lupus in my family. Both my Aunt and my cousin had Lupus, and not to scare you as not all Lupus cases are the same, but both of them are now dead. My cousin was 26 when he died. I get swelling at times, but it's only usually in my hands and feet. I haven't noticed it around my knees when the pain starts up, but trust me they hurt like hell when I get a flare up. I even showed the doctor my hands with the swelling, and she said nothing and changed the subject. Why is that? Well I think, because I only have state health insurance, and since my tests have come up negative, they think I'm a waste of time, and would rather diagnose me as being some sort of nut that is wasting their precious time.
I have been having pain for most of my adult life, but it didn't get worse until after I had my daughter, that's when the symptoms took on with a vengance. (sorry for bad spelling again. :P)
I sure hope things get better for you, at least your wife has had some results with her tests. I wish I could say the same, however I haven't seen a rheumy yet, that is next on my list.
Ps. I'm a chatter box too :P
Back to my Bride :)
I will add Antiphospholipid disease by using the Beta 2 Glycoprotein blood test to our list of stuff to talk about.
This is all very overwhelming and I just want to scream, but I am in charge of gathering info, preparing for the visit. My Bride is so tired and worn down right now with the new baby, night feedings, etc...
I will try and get back in a while and talk more about stuff you all brought up.
Thanks!!!!!!!!!!!!!!!!!!!
So sorry to hear about what you and your wife are going through. You are right this is a tough illness to deal with, and from the start you need a lot of patience, it is a long process, it has been that way for most of us here on DS.
Your wife''s symptoms sound oh so familiar. I began to have many symptoms in my early 30's and here I am at 38 with a dx. finally. I was dx. with UCTD (hand in hand with MCTD) you mentioned your mother in law has this dx. It is treated with many of the meds. that Lupus is. I also have the face rash, which leads my doc. to believe that I could have a mild case of Lupus. (Positive ANA,speckled) and other positive test on the Lupus Panel.
Also wanted to add--have the rheumy test your wife's vitamin D level. Most of us have a very low reading, and need a supplement. I had lot of tooth pain,like your wife, and later attributed to the major lack of vitamin D in my system. Also, a lot of her bone pain can be attributed to lack of vitamin D. So ask for that test too!(simple blood test)
Well just wanted to wish you luck. Be hopeful, there are treatments that can help your wife lead a pretty normal life. Regardless to what her dx. may be. She has a good support group-so that's a great help. She will need you through this--good luck to you both and keep us posted.
So we had a great trip this weekend. 3 days may have been pushing our luck a bit though. I can remember when we did 10 days straight of WDW and she never missed a step. She is still keeping much of her suffering in, but I can see it in the way she moves and the look in her eyes. Day 3 (yesterday) was a tough one. She did not mention anything to me until I mentioned she was not looking well, with that she opened up a little. She said this must be one of those "flare up" days we have read about. She was nauseous, Neck, shoulders, back, hips and knees were hurting. That was the last I heard of it, she is so tough, only way she would let on after that was to take Advil. I tried to not let her hold that baby unless we were sitting, and I pushed the stroller always. little this are about all I can do.
We have not found time to sit down and write everything out for the appointment tomorrow morning, and over the weekend the office called asking for more records. I am not sure we will be able to produce anything more with such short notice.
How do I get this tough lady who "does not want to be a complainer" to open up and let me know how she feels all the time? She keeps so much of it in so I really do not know what is going on other than a physical limp, or that slight green color when here stomach is all knotted up.
Thanks,
Bryan
Hugs
Melissa
It is great that you decided to come on this site to gather further information regarding your wife's possible condition. I read your post and it so reminded me of myself and how I came to know my diagnosis. I am 33 years old. It was approx 4 months postpartum with our second baby(boy).., when my onset of lupus began, this was approx eight months ago. I didnt have any symptoms whatsover with my first pregnancy, delivery, postpartum. My symptoms too were joing pain of the knees, wrists and hands, hair loss and major photosensitivity. I also felt a tremendous amount of anxiety postpartum.. it was very overwhelming,. I as prescribed Zoloft (anti dep) by my ob / gyn.. as they discounted it as postpartum anxiety!! Not!! I took the Zoloft for approx 4 months until the diagnosis of the lupus came about. Then I stopped. The rheumy feels that the hormones can trigger lupus, and that is why it is not uncommon to see flares / onsets of the disease postpartum. When a woman is pregnant, the immune system is suppressed; then when the woman delivers her baby, and is in postpartum period, the immune system goes into "hyperdrive" and this stimulation of the immune system can cause a flare / onset of the disease. Did yor wife have problems prior to the third child being born?
I hope you all have a wonderful time at Disney, I understand very well how overwhelming and scary the possibility of a lupus diagnosis can be; but it is best, like the other responders to your post have said, to know and get on the right treatment plan. Make sure your wife finds a doctor she feels comfortable and respected by. All too often women with lupus are treated as though they have a mental illness and are thus fabricating non factual things in their minds. It is wonderful that you are a supportive husband of her. Keep that up =)
Perhaps suggest to your wife that she join our group. We are all very loving and supportive and understand a lot about this disease. There are women on this site whom have been living with AI / lupus for many, many years and who could be a great source of imformation to you and your wife.
My very best to you. Please feel free to send me a personal message anytime. I would love to help you out in your times of need. My best to your wife.. please let us know how the rheumy appt goes Wednesday. I know we will all be wanting to hear.
Jennifer
I can tell you I'm the same when it comes to certain things and not wanting to talk about them. I have had chest pains for the past few days, but not right by my heart a little bit further down the center bone, but I didn't talk about it, and didn't want to see a doctor about it. I figured it wasn't anything to do with my heart, and I hoped it didn't. I didn't want to get all anxious about it, so I just took things day by day, and luckily it has stopped. That's not the best advice by far, but I also didn't want to be over reacting either. I don't always tell my hubby when I'm in pain either, but he knows.
I have to run to eat, I may get back later tonight... she is amazing.. dinner ready, dancing with the baby, while I work with the boys and post ... Thanks again!!!!
Bryan