🌵 Editor’s Note – The Search for the Right Doctor
If you live in Texas with a rare neurological disease, you probably know one of the hardest part isn’t treatment — it’s getting the right diagnosis and the right doctor. I found the BEST for me and you can to. Don’t settle for anything but the best treatment you can find!
Many of our readers describe years of being told “it’s stress” or “it’s fibromyalgia” before finally hearing the name of their condition: Stiff Person Syndrome, autoimmune encephalitis, neuromyelitis optica, or CIDP, and countless others.
This issue is about shortening that wait. Because the sooner Texans reach specialists who know these rare conditions, the sooner they can get life-changing care.
🗺️ Where Can I Find a Specialist Nearby?
The good news: several Texas neurology centers are now expanding their rare-disease programs.
🔹 UT Southwestern (Dallas):
Nationally recognized for autoimmune neurology, including rare neuropathies and autoimmune encephalitis.
Offers tele-neurology for rural patients within Texas.
Launching a Rare Neuroimmune Coordination Clinic in 2025 to connect patients with multidisciplinary care.
🔹 Houston Methodist Neurological Institute:
Houses dedicated programs for myasthenia gravis, neuromyelitis optica, and CIDP.
Known for advanced diagnostics including antibody panels for neuroimmune disorders.
🔹 Baylor College of Medicine (Houston):
Running multiple clinical trials for rare neuromuscular and neuroinflammatory diseases.
Offers collaborative care across neurology, rheumatology, and immunology — crucial for patients with overlapping conditions.
🔹 Texas Children’s Rare Disease Center (Houston):
Supports pediatric and young-adult patients with genetic or immune-based neurological conditions.
For rural Texans:
Ask your primary care provider to refer through the Texas Rare Disease Advisory Council’s referral portal, which connects community physicians to specialty centers.
📍 Resource: NORD: Texas Rare Disease Advisory Council (RDAC) — state navigation. National Organization for Rare Disorders
🧬 How Do I Get an Accurate, Timely Diagnosis?
Diagnosis delays are still a major challenge for Texans. The average delay for rare neuroimmune conditions is 5–7 years, according to data from NORD and the UT Southwestern Rare Disease Program.
Here’s what’s helping reduce that wait:
✅ Expanded antibody testing:
Texas labs now offer broader autoantibody panels for diseases like autoimmune encephalitis, stiff-person spectrum disorders, and CIDP variants.
✅ Referral “fast lanes”:
UT Southwestern and Baylor have implemented “diagnostic pathways” that flag suspected rare neuroimmune cases, expediting neurologist review.
✅ Genetic and biomarker testing:
Next-generation sequencing is now covered by several Texas insurance plans when ordered by a neurologist for unexplained neuropathies or movement disorders.
🎯 Your Action:
Ask your doctor if they can refer to a neuromuscular or autoimmune neurology specialist. Bring a symptom timeline and any EMG, MRI, or antibody results. Organized records speed up triage and prevent duplicate testing.
🧩 CIDP CORNER — Focus on Early Diagnosis & Texas Access
Why early diagnosis matters:
New data from the Journal of Neurology, 2025 show that Texans with CIDP who reached a neuromuscular specialist within the first 12 months of symptoms had double the remission rate compared to those diagnosed after two years.
Delays are still common—often due to mislabeling as “diabetic neuropathy” or “pinched nerves.”
What’s new in Texas:
UT Southwestern and Houston Methodist are piloting a shared CIDP Diagnostic Pathway using EMG/NCS plus antibody testing to confirm diagnosis faster.
A statewide CIDP Tele-Clinic launched this fall for rural referrals via the Texas Rare Disease Advisory Council.
🎯 Action: If you have unexplained leg weakness or numbness lasting >8 weeks, ask your doctor for a neuromuscular referral—not just a nerve-pain consult.
🧘 Coping with Anxiety & Fatigue
Neurological fatigue isn’t “just tiredness” — it’s part of the disease process.
New research from the Cleveland Clinic Journal of Medicine (2025) found that pacing and structured rest intervals improve energy management in autoimmune neurology patients.
Try this:
Set a timer for two 10-minute breaks daily where you don’t multitask — just rest or breathe. Even small consistency improves fatigue scores over time. This WORKS!
🗓️ Upcoming Texas Events
Nov 8: MDA Neuromuscular Research Conference (Houston)
Feb 29, 2026: Rare Disease Day Texas (Austin & Dallas)
April 2026: Texas NeuroRare Live Panel – “The Future of Diagnosis”
📖 Glossary
Autoimmune Encephalitis (AE): Inflammation of the brain caused by an immune response against neuronal proteins; often antibody-mediated. (Example antibodies: NMDA-R, LGI1.)
Behçet’s Disease (Neuro-Behçet): Multisystem vasculitis that can involve the nervous system; hallmark features include recurrent oral/genital ulcers and uveitis.
Direct Immunofluorescence (DIF) Biopsy: Pathology technique used to detect autoantibodies in tissue (e.g., mucosa/skin) to diagnose disorders like pemphigus.
FcRn Inhibitor: Therapy class that blocks the neonatal Fc receptor, lowering pathogenic IgG (e.g., efgartigimod for CIDP). FDA Access Data
Home Infusion vs. Self-Injection: Home infusion = nurse-administered IV/SC treatments at home; self-injection = patient/caregiver injects at home after training (e.g., HYTRULO prefilled syringe). Label specifics per FDA. FDA Access Data
Neuromuscular Clinic: Specialized neurology service focusing on disorders of peripheral nerves, neuromuscular junction, and muscle (e.g., UT Southwestern, Houston Methodist, Baylor). UT Southwestern Medical Center+2Houston Methodist+2
SC (Subcutaneous) Weekly Dosing: Medication delivered under the skin on a weekly schedule; for CIDP, HYTRULO’s schedule is defined in the FDA label. FDA Access Data
⚠️ Disclaimer We are not doctors—always check with your provider before making health decisions. Spotted an error, have input, or see something confusing? Let us know! All personal stories are anonymous unless you say otherwise. Sponsors never influence our content. We strive for accuracy, but your feedback keeps us honest and helpful. When in doubt, talk to your doc—then come swap stories with us
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