Life With Lupus - Online Support Group

Does anyone get a positive , negative blood draw ?

One month I'm testing positive and others negative. I really don't understand because I've moved and had to get new dr.'s and I'm beginning to feel they think I'm crazy because so far all my blood draws have been negative but previous to moving and getting new dr.'s they were testing positive and then negative. Its frustrating . I feel sick and keep getting the normal rash that appears every month or every couple of weeks. I'm frustrated and stressed about the whole thing. Not only that I'm having pain all over. Had a MRI done and have four herniated disc's and a spinal syntrex in my spinal cord in which they have know Idea where or how it happened but are not doing anything about it , its in the middle of my back between my shoulder blades , in which makes my face tingle and tongue go numb , they say its not pushing against the outer wall of the spinal cord but cant explain why my face or tongue continues to go numb while sleeping or laying down and at times just out of nowhere it starts. And this is a Specialist telling me this. I'm tired of nobody knowing anything and not know what to do except tell me my case isn't server enough to do anything. My herniated back isn't server enough to do surgery, but I'm taking pain meds four times a day and other meds to counter act the pain I'm in but I'm not suppose to be in a lot of pain by the what is showing on the MRI , Who judges this on how much pain or how server the pain should be? I don't understand , I cant get my mind wrapped around this whole thing. I've been dealing with this for almost 5 yrs now and nobody can help me except for meds. They tell me I have to be active .. my  God I  have 8 children and 4 of them are still at home. I'm not over weight if anything I'm under a bit .  I have a husband , one grandchild , dog , cat , chickens and a garden. How much more active can one be ???? And to top it off , the stomach pain I have I had test done to see if there was something wrong with my liver or gallbladder , they found a small mass on my liver so went for ultrasound but all test came back fine . How is it you find a mass on your liver and your fine ??? How is it you feel like on your right side the pain is overwhelming at times. Now with all that coming back alright they are sending me to a OBGYN , claim endo , how is that they took my uterus two yrs ago because they thought I had endo and to stop the pain in my stomach before .. I AM SO FRUSTRATED WITH THIS WHOLE ORDEAL !!!!!!  I wish it would just stop !! This all started after I had a C-Section with my 8th child .. They strewed my life up.. I was healthy ,working and So Happy and active and now I'm just here !!!

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Comment by muckyduck on May 13, 2014 at 9:09am

I wish we could sit down for a cup of tea this morning, Sounds like you have so much going on. Where should we start? The C section itself may not have made the Lupus worse but if you had Lupus (sub clinical) the hormones after childbirth may have activated it. Many times we have symptoms and pain without the labs to confirm this. A good rheumy will trust those initial labs. ( I hope you have copies of them) He will treat you when your symptoms become worse, as it seems yours are. Throwing meds at the problem isn't the answer unless the meds are those which will help. Are you on Plaquinel to slow down the Lupus? Have you done a trial of steroids for inflammation? Even if your labs are negative, these meds can help with your pain. Physical therapy, massage, yoga, gentle exercise (swimming) chiropractor, can all help with the back pain, and meds can help too, but aren't the only answer. I know a lot of people with Lupus and most of them were very active, type A people. This makes life difficult when we cannot keep up. We learn to become grateful and thankful for each day and each small accomplishment. Everyone is different and Lupus affects us all in different ways. I have had abd pain similar to what you describe and no one is able to figure it out. In time it passes. I think it may be related to the Lupus too but it seems like since that has been under control many of those mystery symptoms are too. You are bigger than this disease. You are more important than what you can accomplish in any given day. I drove myself into the ground with work, family, farm life, motherhood, ect.. Now I'm learning to be thankful for those days when I cannot "do" things that I want to do. I am grateful for the quiet, rest that I require. It's not what I would have chosen but in many ways it is the right thing for me now. I hope that you find some peace in today and answers for some of your issues through this group.     Hugs, Marti

Comment by Mary on May 13, 2014 at 8:32am
Hi butrflykzes kisses i'm sorry to hear your not getting the right medical care you should be. My hubby has 5 herniated disks from and ATV accident at work and I can tell he's in so much pain eventhoug he tries to not show it. He's 6"3 and at a good weight but when he lifts our son or something having to bend down I can tell it hurts him, so I feel for you. Look for a specialist on LUPUS in your area and make an appointment asap. Have whatever doctor you have now refer ypu since he/she is not doing anything to help you. That's what I did I found a reumotologist specialist in LUPUS and he was literaly god sent the change has been night and day. Wish you the best of luck research doctors in ur area and go you don't need to continue and endure this for more than you already have. Good luck and best wishes.
Comment by butrflykzes on May 13, 2014 at 7:16am

Thank you poobie , I totally understand the whole thing with degenerative changes , I have had two disc's that have been herniated for almost 5 yrs now and have looked into all of the things one could look into , I was very active all my life from running in 5k' to just living life , I held a few jobs from 5yrs for 1 and 10 for another let alone working from the age of 14 and  went to school and have done accomplished a lot in my life. I have read all up on what I can do to feel better and have done all I can to do so from changing my diet to mostly organic and meatless meals.  It has seemed that things have just gotten worse which I understand can happen. As far as the syrinx it can cause the numbness in the face and tongue , tingling in fingers arms and weakness , in which all I have , it mostly happens at night when I'm asleep and awake  to the tingling and numbness and last for most of days and is worse when the weather is bad "raining or cold " The tingling numbness is something new to me and has just occurred in these last past few months. One thing I have been worried about is that my Father was diagnosed with Agent Orange a few years back and with research these things can happen with Children of these victims. They are saying mostly in women who has been effected and their children but have not researched the children of the men who were effected by Agent Orange.  I'm trying to understand how a healthy women who was very active can go in and have a simple procedure of a C-section and come out with two then four herniated disc's to a cyst's and syrinx in spinal cord. I would love to find a doctor who would throw out the concept of this is how its suppose to be to a doctor who deals with ME and the symptoms that I am having and deal with those what I am telling I'm having. If anyone knows of a doctor who does this Please let me know. and I will contact them I don't care how far I have to go. I need to get better not only for myself but I would love to see my children grow up and enjoy their time growing up ...

Comment by poobie on May 12, 2014 at 11:33am

Well as we age we all suffer from degenerative changes which explains your back  If you are over 30 you are bound to have bulging disks in your back- surgery is not done unless it is causing compression on your spinal cord.  Often a course of physical therapy will give you the tools to help control the pain  Surgery is not benign and you often have more problems after surgery than before- any surgery done heals with scar tissue and that in itself can cause problems.  Also a syrinx can be an incidental finding and that too is not operated on unless it is causing severe compression on the spinal cord itself  The numbness in your face would not be caused by a thoracic syrinx. Hopefully you will find some answers and relief - for starters I would recommend physical therapy to get your back pain under control- that alone would help you feel much better

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