The most amazing medical professional

[Carolina]

Dear Sjogren's Angels,

By sheer luck I now have a medical professional who knows exactly what I'm dealing with!  Talk about feeling validated.  If you read/scan his notes you will see that he is thorough and sympathetic,and very knowledgeable.


Assessment & Plan
Chronic lymphedema of lower extremities
Chronic lymphedema in the lower extremities, exacerbated by neuropathy and lack of mobility. Contributing factors include gabapentin-induced swelling and vascular insufficiency. Lymphedema is not primarily due to venous insufficiency but rather secondary to neuropathy and autoimmune conditions.
- Prescribed pneumatic compression pump for daily use, typically for one hour per day.
- Referred to specialized lymphedema therapist for instruction on compression techniques and equipment use.
- Provided prescription for compression garments to be fitted at a medical supply store.
- Coordinated with physical therapy for ongoing management and monitoring.
 
Autonomic dysfunction with temperature dysregulation
Autonomic dysfunction characterized by temperature dysregulation, with episodes of erythromelalgia and acrocyanosis. Likely due to capillary dysregulation from nerve damage and autoimmune conditions. Management focuses on accommodating autonomic fluctuations without exacerbating skin sensitivity.
- Recommended use of Circaid compression garments to manage temperature dysregulation and provide comfort.
- Educated on the use of compression garments to accommodate autonomic fluctuations.
 
Chronic peripheral neuropathy with small fiber involvement
Chronic peripheral neuropathy with small fiber involvement, contributing to balance issues and hypersensitivity to touch. Neuropathy is a significant factor in her inability to walk and contributes to lymphedema.
- Continue current management with gabapentin for neuropathic pain.
- Encouraged use of assistive devices for mobility as needed.
 
Steroid-induced skin atrophy and senile purpura
Steroid-induced skin atrophy and senile purpura, resulting in fragile skin prone to tearing and bruising. Skin condition exacerbated by chronic steroid use and autoimmune conditions.
- Recommended over-the-counter oatmeal-based lotions such as Gold Bond eczema, Cetaphil eczema, or Aveeno for skin care.
- Suggested use of Dormin for additional skin reinforcement and bruising prevention.
- Advised on the use of a skin cocktail with hydrocortisone and Benadryl for localized inflammation.
Diagnoses and all orders for this visit:
 
Varicose veins of both lower extremities with complications
Lymphedema of both lower extremities
-     Ambulatory Referral to Physical Therapy
Pain syndrome, chronic
H/O diastolic dysfunction, grade 1 on TTE at Duke Cardiology of Raleigh 10/11/2011
Polymyalgia rheumatica (HHS-HCC)
Polyneuropathy
Idiopathic small fiber sensory neuropathy
Adrenal insufficiency (HHS-HCC)

This doctor knows erythromelalgia, too!

I also have constant painful Sciatic due to compression of nerves at L4-5.  I am seeing a Professor of Neurosurgery on the faculty of Duke Medical School on Monday 

I have a large Squamous Cell Carcinoma on my cheek very near my eye.  My doctor is a Professor of Dermatology on the faculty of Duke Medical School.  He is coordinating MOHS surgery with an Ocular Plastic Surgeon.

My gastric-esophageal autonomic neuropathy causes food to stop moving into my stomach.  The second surgery did not last for more than 6 mos.  The first surgery lasted for 9 yrs.  Now more drastic surgery is under consideration.

I am getting a custom power chair which will make my life easier.  I already have a hospital bed (the most basic one). 

I am getting tired of all this.  I spend all of my time coping.

Sorry my post is so lengthy, but I know that HERE I will be understood.

Elaine

[Scottietottie]

Sounds like you've hit the jackpot for medical professional! I'm so glad for you.

I'm also sorry you have so much to deal with but it really sounds as though they are going to help.

Wishing you all the best for 2026.

Take care - Scottie