Here's another report from the conference. I'm posting this one, since I think that it might be important to many of us. I for one, have had a neurologist misdiagnose me with MS and then seem very concerned when my MRI was normal. This presentation made it all make sense to me.
Neuropathy in SJS and other rheumatic diseases Ann Parke, MD
Dr. Parke is from the Univ. of Connecticut Health Center. She says that rheumatic diseases are systemic arthritis and skin complaints are just some of the symptoms.
Neurological symptoms may occur in The Central Nervous System (brain and spinal cord), The peripheral Nervous System (sensory somatic system) or The Autonomic Nervous System.
Sensory neurons conduct messages from the external environment to the CNS. Motor nerves conduct messages from the CNS to muscles and glands.
The Autonomic system consists of sensory and motor neurons that connect the CNS to the organs and conduct mostly involuntary messages (breathing, etc.) and use two groups of motor neurons one pre, one post ganglionic. Ganglia are on either side of spinal cord.
Simple entrapment syndromes carpal tunnel syndrome or radiculopathies
Inflammatory vasculitis and/or auto antibody a. Ro antibody pure sensory neuropathy associated with SSA antibody - 2% SJS patients. B. Phospholipid antibody thrombotic and demyelinating syndrome 14% SJS patients more common in Lupus.
Vasculitis purpura red , raised dots on legs, upper thighs, or trunk
Central disease includes stroke-like symptoms, aseptic meningitis, dementia, demyelination syndrome, acute psychosis and sudden acute hearing loss.
Peripheral Disease mononeuritis multiplex damage to nerves outside the brain and spinal cord ( added info - http://emedicine.medscape.com/article/316024-overview )
Peripheral Neuropathy - symptoms depend on underlying pathology and size of affected nerves. Large nerve abnormalities can be detected by nerve conduction tests. Skin biopsies (epidermal nerve fiber density biopsy) can detect small fiber disease. Nerve biopsies help diagnose vasculitis.
Commonly a sensory neuropathy
Usually lower limbs
Glove and stocking pattern
Combined mixed polyneuropathy is more severe.
Burning pain & tingling
Usually in feet & legs
Up to 60% SJS patients may have PN, mostly small fiber neuropathy.
Cranial Neuropathies Bells palsy, trigeminal neuralgia and others
Tilt table tests show abnormalities blood pressure not well maintained
Mixture of sympathetic (fight or flight system) and parasympathetic (returns body to normal) dysfunction.
Evidence shows that there is abnormal neuro-endocrine control
May be caused by inflammatory cytokines interfere with neural release of acetyl choline
SJS antibodies to muscarinic 3 receptor have been shown in SJS interfere with glandular function in animal models.
SLE - autoantibodies associated with other diseases and syndromes:
Protein-Phosphilipid antibody recurrent arterial & venous thrombosis
Antimitochondrial antibody Primary biliary cirrhosis
Anti Ro antibody Neonatal lupus syndrome
A.N.C.A. Wegners Granulomatosis, other vasculitidies
Phospholipid antibody syndrome cerebral ischemic disease
Autoantibodies and Disease - autoantibodies may be present for years before clinical complaints develop. Loss of tolerance and autoantibody production is genetically controlled and environmentally triggered.
New meds on the horizon those that interfere with abnormal B cell function.
I've seen so many people asking questions about neuropathies, so I hope that this report is helpful.
Do you think that I should make your posts sticky's?? this information is so valuable and eye opening. I am thinking that we might even add a forum specifically for Sjogren's. If you think that is a good idea, let me know and I will ask Conrad to do that for us!
Peace and Blessings
Look For The Good and Praise It!
I'm certainly glad that these reports are helping people. The presentations were eye-opening to me, so I wanted to share with my friends. There are six more to go. I'm going out of town again tomorrow, so I'll be a bit slow on some of them. Rob also mentioned making these into stickys. I think that it might be a good idea - something to which to direct newbies when they ask questions that these reports might answer easily.
Again, I'm so pleased that folks are finding these reports helpful - I love to feel useful!
Thank you for all your work, posting all these reports. I have read all of them and they are very, very helpful.
You are a good friend.
I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).