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ahooker143
07-29-2008, 07:01 PM
Hi I'm Amy. My mom has lupus and has been bugging me forever to get tested because I have a signs of it. I also already have another autoimmune disease. I finally had a physical last Friday and went ahead and asked to be tested. My test came back positive. I'm terrified.

I wonder what symptoms are related. I also came back with low potassium and B12 and a urinary tract infection that I've never had any symptoms of. Last night my arms, hands, and face started tingling really badly then my hands cramped up to were I couldn't move them at all. It happens every month or so. I don't know if that is the potassium or the lupus. Anybody else have that happen? Now today I have the fever and flu like pain. I also have bad arthritis in my knees that was originally diagnosed when I was 18. I am 28 now. I have bad shoulders, hips, and ankles also.

This is kinda alot to take in for me now.

KathyW1958
07-30-2008, 04:56 AM
Hi and welcome to the forum. I am sorry that this is happening to you, but you know the sooner you find out and start getting treated the better off it is. Have you been put on Plaquenil or Prednisone or anything yet fot it. Do you have a B12 deficiency and if so are you taking the monthly shots for that? There will be a lot of folks that come here that are very knowlegeable and everyone is so kind and caring big time. I just want to welcome you.

Hugs,
Kathy

Saysusie
07-30-2008, 10:10 AM
Hi Ahooker143:
You mentioned that you already have another auto-immune disease, which disease is that? Your tests came back positive for Lupus?
Low potassium is not that uncommon in Lupus patients. The exact mechanisms is not thoroughly understood. However, symptoms of fatigue, anemia, thryroid dysfunction, and calcium deficiency have been linked to low potassium. Lupus can cause thyroid dysfunction, anemia and fatigue. So, in a sense, I guess that Lupus can set the stage for low potassium. The hand cramping can very well be from the low potassium and the tingling may be due to the cramping.
Often, when we experience pain, it is found that our B12 levels are very low also. Many of us take B12 supplements (I take the supplement and I get the shot every month) in order to replenish our levels.
The tingling in your arms and face can be the result of several things. How were your sugar levels when tested? Also, One of the symptoms of SLE can be a peripheral neuropathy-both or one-motor sensory neuropahty. There is an inflammatory response in the peripheral nerve, due to the SLE. The use of steriods has been shown to be a good treatment for this. Although this does sound like the peripheral nerve neuropathy of SLE, it might be a good idea to get an MRI and make sure this isn't cerebral SLE.
The flu like symptoms are common to Lupus, it is often described as having the worse case of the flu in your life and the symptoms never go away. Achy joints, muscles, fatigue, and general malaise are all common symptoms of Lupus. Also, a constant low-grade fever is a common symptoms of Lupus.
You did not mention what type of treatments your doctor has started you on. If you tell us what treatments you've been prescribed, we can help you to understand why they were prescribed and what symptoms they can help.
Welcome to our family, if you read other posts in these forums, you may find the answers to some of your questions. Please know that you are not alone and that we are here to help you in any way that we can.

Peace and Blessings
Saysusie

ahooker143
07-30-2008, 05:51 PM
Well, they didn't say anything about my sugar levels or thyroid issues. The other autoimmune disease I have is Meniere's Disease. I was diagnosed when I was 16 but I've had it since I was 13. The doctors here just wouldn't diagnose me because I was so young. I had it in my left ear for years and then about 3 years ago I started having symptoms in my right ear, too. From what I understand, it is uncommon to get it in both ears. I'm not on any meds yet. I go to the doctor next week to get a referral. I'm just going to ask to go to my mom's doctor since he has helped her alot. I've had a pretty recent C-spine MRI and a brain MRI. I have a neuro appt tomorrow and I had my internist fax over the test results. I'm starting to wonder if the migraines I've had all these years are really migraines. Part of me is glad that I'm not really a hypochondriac. I've felt for so long that all the docs just think I'm crazy because I always feel bad. Oh, and about the neuropathy, I've had that for a long time but I've always thought that it was just the Topomax I've been on for my migraines. It still could be. It is a side effect. And it also makes me tingle. But when my hands cramp like that it is a different type of tingling. Is a riboflavin deficiency another problem? It just kind of seems like there are alot of different things that you can have deficiencies in from what you were telling me. I seem to get riboflavin deficiencies alot. My mother does too. I get these sores in the corner of my mouth and if I load up on extra riboflavin (more than the normal amount I already take) then they will go away pretty quickly. I also once had this huge thing on my leg that they called purpura. Has anybody ever heard of that linked to lupus? I've never had any other skin problems. I just can't go in the sun. And my skin is super sensitive.

I love the site. Thanks for the info.

laurid8967
07-30-2008, 06:23 PM
Amy,
As you can see, there are alot of people here with very reliable information. You will also find compassion and understanding here. I am confused. Your tests came back positive, but your doc didnt treat you? Or were you referred to a rheumatologist? When you say you tested positive, do you mean you were officially diagnosed? Sometimes out ANA can be positive, but that by itself doesnt neccessarily mean you have lupus. There are 11 critera, and 4 of those must be met before offfical Dx.
In any case, there is no need to be terrified. This disease can be managed very well with the proper treatment and self-care. See the stickys on this website for help in keeping yourself heatlthy.
Let us know what the doc says...OK? And, welcome
Lauri