Develop a Team 

Having a team on your side is the key to doing well mentally and physicaly with HSP.  Engaging with family and friends are valuable, and so is your medical team.  Part of your medical care team could include having a Primary Care doctor, a Neurologist, a Physiatrist or a Physical Medicine and Rehabilitation Specialist, a Neuro Physical Therapist, an Occcupational Therapist, a nutritionist, and perhaps even an acupuncturist.  Having someone for your mental health is also a great resourse - though it's difficult to find someone who knows how to counsel for neurodegenerative diseases.  Perhaps one of your specialists on your team knows of specific people to refer for help.

Visit a Physiatrist

A physiatrist is a doctor specializing in Physical Medicine and Rehabilitation (PM&R), who treats injuries and illnesses affecting the muscles, bones, and nervous system to improve a patient's function and quality of life. They diagnose and manage pain, help patients recover from injuries, and design comprehensive, often non-surgical treatment plans that may include physical therapy, medication, and various medical procedures.  

Physiatrists see patients as a whole person.  My physiatrist diagnosed my issue in a few minutes.  She sent the referral for a nerve ablation and I was on my way.  After my treatment, I felt better than I've felt in years.

I listened to an SPF Talk and a sweet English lady said, "Everyone with HSP needs to see a physiatrist," and I agree. 

Injection Therapies

Chemoneurolysis is a nerve block using phenol to destroy the peripheral nerves in the upper and lower limbs that are innervating the overactive muscles resulting in muscle relaxation and reduction of contractions.  Phenol is a targeted chemical denervation which can be used to treat multiple areas - without the same cumulative dose limitations of botox. Phenol acts immediately where botox usually takes several days for it to take effect.  In addition,  phenol 's effects tend to last longer than botox.  Phenol lasts for approximately 6 months or longer in many cases.  It's also more affordable than botox.  Not as many doctors preform Chemoneurolysis as do botox, so have patience finding for a provider.  Try UC San Diego Health, Scripps Health, or other specialized pain/neurology clinics which have comprehensive pain management and neurology departments. 

Please let us know of an places you find that do this nerve block, so we can add them here.

Chemodenervation with botulinum toxin is injected directecly into the spastic or overactive muscles; disrupting the release of acetocholine at the juncture between the nerve and the muscle.  By doing that, it destroys the periphreal nerves that innervate the muscles.  This reduces muscle contractions and relaxes the muscles.  It avoids systemic effects as it is confined to the spacific area rather than being absorbed into general circulation affecting the entire body.  The brand names for this procedure are Botox, Dysport, Xeomin, and Myobloc.  Botox takes 3-4 days to take effect.  It peaks in 2-3 weeks and lasts for 3 months.   It is approved for the spasticity in the arms and legs, but doctors may inject other spastic muscles which have been found to be successful.  It can be difficult to find the right muscle, and the right dose, so you may need patience to find its success.  Some people try once and give up.  It can take more persistance than that.  Botox can also be used for an over-active bladder.

For an overactive bladder - there are several remedies including pelvic floor exercises, meds, botox, or...

The nerves of the sacral nerve plexus regulate the bladder and/or rectal activity. PTNS uses an acupuncture-like needle inserted above the ankle to stimulate the sacral nerve plexus with a gentle electrical stimulation.  The treatment consists of ten weekly sessions of electro stimulation for 30 minutes each.  The success rate of PTNS -  66% of patients experience significant improvement of their symptoms.  You will likely need a referral to the NYO/OBGYN department which also treats men (If you have Kaiser SD - try Dr. Jasmine Tan-Kim, San Marcos). I do not know of anyone with HSP trying this, so if you have tried PTNS, please let us know how it worked for you, and tell us where you were treated in SD so we can possibly add it to our site.

Surgeries

What medical injections or surgeries have you tried to lessen the severity of HSP symptoms in the trunk and lower body? We would also like to know the doctors and San Diego locations where you received treatment, so we can help others learn who to talk to about these options.

 hsp-sandiego@sonic.net

Future considerations not yet FDA approved for spasticity/pain:

Hyaluronidase - an enzyme that breaks down the hyaluronic acid which accumulates in paretic muscles and causes muscle stiffness without causing the muscle weakness commonly seen in botox.  Hyaluronidase is currently a delivery facilitator used with other drugs to help them spread and absorb in tissue.  UC San Diego Health Neurological Institute has neurology specialists who manage complex conditions (e.g. spasticity).  So they may be an option in the future.   

Trenibotulinumtoxine- TrenibotE has a faster toxin onset and shorter duration (2-3 weeks) than Botox,Xeomin, Daxxify.

DaxibotulinumtoxinA - Daxxify is a neuromuscular blocking agent similar to Botox with a longer duration than Botox.  It does not use human albumin which contributes to its having a longer duration of effect.  It is approved for cosmetic reasons and for cervical dystonia but not spasticity nor chronic pain.  Phase 2 trials were completed for adult upper limb spasticity - awaiting FDA approval.