Hi everyone I think this might be a bummer of a first post, but I'm not sure how else to start.
I'm a 34 year old female with no diagnosis as of yet. My symptoms started in mid-Dec with headaches and double vision. It progressed to tingling/loss of sensations in hands and feet, awful fatigue and brain fog, Raynaud's, rash on my face and chest, and most recently, knee/elbow pain. I've been to a neurologist, neuro-opthlamologist, and rheumatologist. They rheumy is the most recent that I've seen, and he thinks lups or lups-like syndroome. All my blood work before the rheumy has come back negative, but he has reordered almost everything plus a slew of other tests. He also put me on Plaquenil (added to Indocin and Verapamil supposed to treat double vision and headaches). While I'm very encouraged that I've not been written off as a head case - I've read stories about those that have - my body feels like it continues to fall apart. I think the Plaquenil has made my chronic headaches worse - doc said that was possible, but to try to push through, as it should level off as my body gets used to the new drug.
My husband has been by my side through this whole thing... he really is my rock. He's taken care of me when I needed it, been to just about all of my drs appts, listened when I needed it, and left me alone when I needed that too. Unfortunately, he is a pilot, and is gone for half of each month. He left this morning for his usual 2 weeks, and I'm left feeling worse than usual after he leaves. I haven't really told anyone else, since there's not much to tell except a laundry list of symptoms that no one has put a name to yet. I've come across this forum before, as I've done a lot of reading, but I thought maybe this could be a place I turn to for help/friendship from people that might know what this is like. Thanks for reading
Please remember that none of us are doctors however because there is not a test for Lupus it often takes a long time to diagnose. Basically they have to rule out everything else before they can give you a firm answer. It is good news that the doctor is being proactive and started you on plaquenil. It does take the plaquenil between 3-6 months to get completely in your system so please try and give it some time and hopefully you will adjust. It is one of the best medicines that we have to help control this disease.
Please make yourself at home here. We are glad to have you as a part of the WHL family!
Success is not final, failure is not fatal: it is the courage to continue that counts.
hi sugar pie.
i am glad you have decided to join us.
we are here because we all need each others support.
i for one am happy to call you part of my cyber family.