Reply To: Residuals? 21 years later?

February 6, 2019 at 5:32 am

Hey all, just another update! [Almost a year later!]

I am still here and lurking, just haven’t posed much. I would say, in a sense, things have progressed for me. I started using a power wheelchair maybe two months after I posted about 10 months ago. After the forearm crutches required too much strength to use, and caused a ton of pain, the old PT I worked with and I sat down and made the decision to move forward with a power wheelchair for outside of the home. [Where I live is not wheelchair accessible]

I now have a beautiful Quantum Edge 2.0 from the Muscular Dystrophy Association. I am blessed to have this, and it gives me so much independence and freedom.
I became a Certified Peer Specialist [person with lived experience who can assist others in their journeys of recovery] and Community Health Worker in November 2018. I used my old power wheelchair to get to class. I used my old rollator [a walker with a seat] for graduation. I begin a career as a Certified Peer Specialist at a local disabilities organization in March. We work with people who are wheelchair users, like myself, and I am becoming a part of a new program who aims to help those who also have mental health struggles–bridging the gap between medical and mental health. It is truly groundbreaking.

My life is going the way I want it. I have mostly accepted that I am now disabled, though, that does not stop me from searching for concrete answers about what is going on with my physical health. I have my first EMG in about 10 months today. I am curious to see what it shows. I have specialists, upon specialists, upon specialists. I have been diagnosed with POTS [Postural Orthosthotic Tachycardia Syndrome] and receive saline infusions through a PICC line daily. They help, mostly because I have IBS as well and I do not absorb things, like fluids orally, very well.

As far as my urinary incontinence–I do not have many answers. I am going to be starting pelvic floor physical therapy in the upcoming months. I am hoping this helps. Because I am a trans man who was assigned female at birth, this is the best method, my urologist says. I also hope to get clearance to have lower surgery [genital] past 2020. I am hoping this pelvic floor physical therapy resolves my issues so I can move forward.

I also see a rheumatologist, who a few days ago, ran a ton of blood work. He is very thorough and told me that I will most likely test positive for my whole life on ANA and SSA tests due to my bout with GBS. I thought that was interesting. He said that, at any time, I could get GBS or another autoimmune disease. He feels that my symptoms and troubles are mostly related to past GBS and the nerve damage associated with that.

I am also looking into neurologists who specialize in Small Fiber Neuropathy, which is common in those who have POTS. I have recommendations from my cardiologist, who is amazing.

If anyone ever needs any support, has questions about what I have gone through, etc, feel free to reach out. I go to mental health therapy 1x a week to process all that is happening in my physical health life. It is a lot to take in. This disease is truly a mystery. I never thought it would be with me for my whole life.