anyone ere w/ severe neuro symptom, share helps and resources please.
right hand not last 3 hours working. in flare too. am in south u.s.
have 6 of these happen off and on-
from lupus org
Major Signs That Lupus Has Affected the Nervous System
Cognitive dysfunction (for example, not thinking clearly)
Headache
Seizure
Altered mental alertness (for example, stupor or coma)
Aseptic meningitis
Stroke
Peripheral neuropathy (for example, numbness, tingling, burning of the hands and/or feet)
Movement disorders
Paralysis
Altered behavior
Visual changes
Autonomic neuropathy (for example, flushing, mottled skin)
Adapted from The Lupus Book: A Guide for Patients and Their Families, Revised and Expanded Edition by Daniel J. Wallace, M.D. Reprinted with permission of Oxford University Press.
i cannot help but lupus foundation of American and other non profit lupus companies have helped me with other unusual lupus problems....to finding doctors that specialize in it and others who also have it.
Sooo sorry....have they checked you for other like ALS as my doctor just got it about year ago but has almost all the symptoms you listed. Just far reaching idea.
Im sorry your in so much pain.I do accunpunture when im in a flare and it helps ALOT.
In alot of cities they have community accunpunture centers (if you google that) and you can pay a small donation(sliding scale fee).Sometimes calming down the nervous system while you are in the process of the whole medical doc stuff can help too.
I have been having severe problems with this myself. I have all of the symptoms above but my cns blood test came back negative. The migraines are everyday now, with bells palsey, dizziness, nauseua, and muscle weakness in arms, hands ands leg muscles…all randomly. I had an mri Friday so I’m waiting for the results. Anyone know what this is? My rheumy doesn’t know and is waiting for mri results. The tec asked me during the mri if I was sure I didn’t have any metal in my head cause there was a grey spot on screen…yeah like that didn’t freak me out at all.
I went to my cardiologist last week and there is a condition where we tend to have much more build-up in our arteries which is why we are at higher risk for heart attack and stroke. That said, he checked both of the pulses in my wrists.
Because I know that my sub-clavean artery has a blockage, this is a way to determine when surgery may be necessary. The weaker pulse in my left wrist is because the blood is not flowing as strongly as in the right.
This isn't making sense, but the point is that you may have a blockage that isn't allowing proper blood flow to your hand. You need to have this checked. It's a simple ultrasound that may save your life. If a piece of the plaque breaks off it could create all sorts of havoc.
Hi Morgan
Since my diagnosis 2 1/2 years ago, I have had tremors, tingling, numbness, headaches, difficulty speaking at times (I know what I want to say but the words do not come out), mixing up words and names, and now vertigo. This is in addition to the pain, inflamation, fatigue, ANA, etc of lupus. I see a neurologist almost as often as rheumatologist. Brain MRI and spinal tap were normal. A neurophychiatrist tested me for cognitive thinking and all was good.
I have had rashes from sun along nerve paths on my arms and torso areas....just figured sun related and have never even said word to my doctor. So for you two others who i guess i am also in that same arena but with my lupus i have had many atypical things go on with it. Where now i starting to think might have nervous or neurologic issues going on....a lot of these started when i was over drugged by this one idiot doctor. I never been same though off them now for over 5 yrs. I just cannot get back to feeling like myself.
Also since we have inflammation ( most diseases are basically a kind of inflammation) so it does make us more susceptible to strokes and heart problems. This is in many places but i was reading it on newsletter specifically about heart problems and know i have on like LFA and most non profit organizations for lupus.
I found it really interesting about how most diseases are inflammatory.
Sure if you google it a lot of articles about it will come up or just look in jama.
GP's rarely have the proper training in the signs and symptoms of Lupus. A Rhuemy is imperative as they specialize in auto-immune disorders. My GP wanted to send me to UCLA as he couldn't figure out what was causing the problems. Luckily (I know that sounds strange) I had a stroke which brought the right doc to my bedside who recognized the symptoms and (although it took 5 months) ordered a biopsy to confirm his suspicions.
Don't get me wrong, my GP is super, but not afraid to admit when he is over his head. If yours is, time to get a new one.
Hi Morgan. I have had Neuro psych problems since 2008. Cognitive dysfunction, change in mental alertness, memory loss, problems retaining/retrieving info, poor work performance - I could go on and on. I’ve been receiving treatment for major depressive disorder, anxiety, panic, depersonalization disorder. I’m at a loss at this point I really hope that someone can get to the bottom of this soon because on I’m losing hope. Its been 5 years now and there’s been no change in my cognition. I’m on Social Security disability because of the fact that I can’t work due to the mental problems that I have and its just really to the point where I’m just losing any type of hope that I’ll ever get better and be able to function normally again. I’m thankful to have found someone else that knows what I’m going through, that has been experiencing the same problems that I have. After all this time finally there’ s someone that knows what I’m talking about.