Long time no talk. So, after over a year now it may take me a little to catchup. I remain undiagnosed after over 2 yrs. but still inclined to believe my autoimmune disorder is lupus. My rheumy is still undecided but wants me to continue on sulfasalazine for my joints. I started having a new neurological fun thing with seizure type appearance. The occurrences are rare but now I am having all the lovely neuro testing. So, with rheumatology, pulmonology, GP, add neuro. I wonder if this is how I will be diagnosed finally. Fears abound with talk of MS and so forth. But I know in my gut I have all the lupus symptoms and as it goes---enough will eventually leave my rheumy satisfied that that's what it is. I know he's afraid of saying one thing and finding it is something else. Everyone lives in fear of lawsuits these days. Unfortunately, I hate that more systems are being affected before the diagnosis comes. I am surprised that my cardiac issues early in the year didn't land me with cardiology and more inspection---they just increased the dose for the tachycardia med that has been ongoing for ages. I have been fortunate that my facial rashes have been light although continuing throughout the years. I often reflect that I have outlived my cousin who had lupus by quite a few years. But I know a large part of that is the steroids just eventually killed her kidneys. Thus, I avoid them like the plague. So, if anyone would like to comment on neurological manifestations of lupus--I would be interested to hear about their experiences. I have missed alot of my friends here but have been working alot and crazy busy. Love to all! Karla
A major complication of Lupus, not steroids, is kidney failure - when you have lupus nephritis steroids are often the only thing to slow this down. Long term this illness has an adverse effect on most of your body systems and unfortunately all the drugs to treat have serious side effects. But in many its the drugs which minimize the damage being done. A damned if you do and a damned if you don't scenario.
I get depersonalization/derealization a lot and also suffer from dizziness on a daily basis. I have recently been diagnosed with Lupus but do not know if it is related.
I have neurological manifestations. My biggest one is inflammation of the brain and spinal cord, Peripheral neuropathy (e.g. numbness, tingling, burning of the hands and feet). It’s very confusing at times. My neurologist told me I had Acute Disseminated Encephalomyelitis a rare disease but he believes it was caused by my lupus. Honestly, I wish I could avoid the Prednisone the side effects are awful but unfortunately every time I get tapered off I have a really bad flare. So I’m pretty much stuck with it for now.
Karla, I hope they get some answers and proper treatment for you. What does neuro testing involve?FaithLove1985 , when you mentioned, depersonalization/derealization, what does that mean for you?
Thanks Poobie, for the info you shared.
Welcome back Karla.... thank you for posting this discussion...
Hey Grace. I had the EEG Friday and get an MRI of the brain tomorrow. Blood work again as soon as I can take it. ALS–Lou Gehrig’s is another consideration for diagnosis. But I think that’s a stretch.
I’ll be thinking about you. Let us know how it goes.
Hello!, Welcome back, and seasons greetings !!! Hope that you are doing your best to stay pain free during these days and stress free? Take care…Beverly L.
That's rough Brittany. But maybe I will find something out from the pain and torture of the testing. It took 3 hours for the EEG to get done and I never did go to sleep. They don't drug people anymore for the test due to lack of funds for nurses and a belief that it may affect the outcome. So, I was sleep deprived, decaffeinated and the test is incomplete. My hair was pulled and my scalp scraped and glued/gummed. The following test/MRI I was stuck 3 times before they could get the contrast in and then was majorly nauseated. I'm still bruised a week later.My insurance said they would pay for test after the fact but only without contrast. What? Haven't done the bloodwork yet. Maybe Tues. I couldn't take the extra neurontin the neuro wanted me to. I was feeling hungover in the mornings and I've got to work. I hope this all leads to a diagnosis. I'd like to think I went through this for something. Otherwise I plan to not go through alot of this stuff again. I had one slight twitching episode this past week. I had the stomach flu that's going around and it was mostly just my arms jerking for a short time. No pain or loss of consciousness. Sometimes I just feel like letting whatever is going to happen--happen. Let nature take it's course. I know it sounds like giving up. But you get tired of fighting and feeling like no one believes you and you've been undiagnosed; undertreated; paid people til you're broke; suffered from the illness; questioned by work,family,friends, people on the street, etc; gave up pain relief to have a job; the treatment; the tests; the meds; the stress; and have nothing to show for any of it. Sorry just frustrated and depressed. I see too often though people that don't want to be tested and/or medicated go thru these things just because the Dr. said they should. We have a right to say enough too.
I have neurological manifestations. My biggest one is inflammation of the brain and spinal cord, Peripheral neuropathy (e.g. numbness, tingling, burning of the hands and feet). It's very confusing at times. My neurologist told me I had Acute Disseminated Encephalomyelitis a rare disease but he believes it was caused by my lupus. Honestly, I wish I could avoid the Prednisone the side effects are awful but unfortunately every time I get tapered off I have a really bad flare. So I'm pretty much stuck with it for now.
I completely understand it took four years (two of these years I was “pre-lupus”) for me to get a diagnosis; I only got the diagnosis after I ended up in the hospital unconscious. It’s extremely frustrating. You know your body better then anyone else. Don’t give up, keep fighting until you get answers. Wishing you luck, I hope you get some answers very soon.
Brittany that is very good advice!!!!! Seasons Greetings...Beverly L.