View Full Version : It's been a while but I'm finally getting some where
04-06-2010, 10:55 AM
Oh My Gosh it's been about six weeks since I last left a post on here. I've been doing not okay. The Rheumy said that he couldn't find anything wrong with me. I've been in so much pain that I haven't left the house for two weeks after that. Then I thought to myself maybe it's me not getting the sunshine and vitamin d that's making me icky. Well the walks were nice with my sons and Zoey (our goldie dog) Then something that was SO scary happened to me Friday the 2nd of this month. I was taking a bath, then I had this pain so horrible in my feet I couldn't touch the bottom of the tub. The pain then radiated up my legs and then I couldn't move them. I was paralyzed from the waist down. My husband had to come into the bathroom and literally throw one leg at a time out of the tub, dry me off, and dress all while I was bawling and panicking. (My husband really got my goat because he was so calm and was telling me every-thing's okay. You'll be fine) About 40 to 50 minutes later my legs got movement back into them. It still felt like I was carrying lead weights on my legs. So yesterday I went back to my kids' doctor (since he was the only doctor I've talked to that actually listened to me) I told him what had happened and that the feeling of the lead weights was still there and that the feeling of fire was going through my arms and hands, my thighs and feet, and my face. Both my hands, legs and feet had edema on them. He told me that we're going to try a Neurologist next. He was so concerned I've got my appointment tomorrow morning. Hopefully there is going to be an answer to this. This is going to sound bad... I hope it does turn out to be lupus, like he thought it was at first. (before I saw the rheumy with no bedside manners) I hope it has nothing to do with my nervous system.
To who ever reads this Thank you for letting me get it all out. I'm scared, angry and anxious all at the same time.
04-06-2010, 11:41 AM
What an absolutely horrifying experience! I know your husband was also afraid, but it sounds as if he was trying to assure himself as much or more than he was trying to assure you. Men handle these types of things so differently and I am sure that his fear was just as great as yours.
I completely understand that you'd rather be told that this issue is Lupus than to be told that it is a neurological issue. However, I have to tell you that temporary paralysis is a symptoms of Lupus and that it usually occurs when there is central nervous system involvement with Lupus. So, your doctor is right to send you to a neurologist for this issue so that it can be treated immediately.
I would hope that your rheumatologist would now be willing to take you seriously and to treat you appropriately. I am glad, at least, that you have your children's doctor who will listen to you and take appropriate measures.
Please tell us how your appointment goes and know that we are here for you.
Peace and Blessings
04-06-2010, 06:42 PM
Saysusie your kind words have helped alot through all the trails I have been going through. I didn't associate the numbness and paralization of my legs with lupus. I thought lupus just affected the skin and your organs. Not your nervous system. I will write again tomorrow on this post and let you all know how my doctors apointment went.
04-06-2010, 07:29 PM
That was a scary experience! I've had peripheral neuropathy for a long time. My toes and feet are tingling and numb. Often it feels like I'm wearing socks when I'm not. Lately, my fingers and hands have been doing the same thing. I've been reading that the central nervous system can be affected by quite a few of the autoimmune diseases. You should insist on nerve testing and I've been told to insist on a skin biopsy for peripheral neuropathy. I haven't had that one, but I'm going to ask about it.
Take care, and keep us informed.
04-07-2010, 07:00 PM
Well I went to the Neurologist today. He's going to put me through an MRI (I can't schedule it until next week. I don't have anyone to watch my kids until then) and I have to do a blood draw. They want me to do a fasting 2 hour diabetic draw on top of the other things there looking for on Saturday. Yuck. He's going to retest for Lupus and RA and he's testing my thyroid levels and b12. So is there any test, other than an ANA, that the doctor would be running to see if I do have lupus? Last time the ANA was ran it came back negative. Why would he be checking my vitamin B levels?
Today he was just doing the normal test. Does this feel cold on your skin. I was suppose to answer yes, which I did on my arms, but on my legs and feet it felt like it was skin temperature. Then he took a needle and scratched me. Does this hurt? Actually... it tickled my arms and I couldn't feel it on my legs or feet. Then he took out a tuning fork and put it on my big toe and told me to tell him when it stopped. I couldn't feel it stopping on my right side. He tried the left it stopped in 5 seconds. He tested my feet's reflexes. My left was "good" and he hmmmed on my right. It didn't do anything. Plus he noticed that I've got tremors in my hands... he said it might be caused by medication.
Marla I didn't connect neurological problems with an autoimmune disease. He said after I rule out everything else we are going to do nerve tests. I hope it's not like what my husband had. (had electrodes inserted into his thighs when he couldn't move them.... turned out that his nerves were fine... it's his back... he has a disease that plagues some native americans... ankylosing spondylitis. It is where his lower spine and hips are inflamed plus he has bone spurs on his pelvis. Now I'm just blabbing) How can they test with just the skin? Is it with temperatures?