Devics Disease Is Not Multiple Sclerosis
Chronic Pain, COVID-19, Immune Disease, Neurological Disease, Rare Disease
Issues and Challenges
Shiela Marie Sta. Maria Rutaquio has encountered: Access to Expert Providers, Rare / Underserved Disease, Disability
Greetings Everyone, I'm Shiela Marie Sta. Maria Rutaquio from Binangonan, Rizal Philippines 1940, who have this rare and incurable autoimmune disease called NMOSD (NEUROMYELITIS OPTICA SPECTRUM DISORDER) a demyelinating disease commonly known as DEVIC'S DISEASE and mostly mistaken as MS or MULTIPLE SCLEROSIS, same symptoms but different treatments to manage it.
I've been diagnosed since July 31, 2018. It is about my own Immune System fights against itself that causes my SPINAL CORD NERVE MYELIN SHEATH to be damage RESULTING TO PARALYSIS from my Thorasic 8 down to my Lower Limbs, severe Lower Back Pain as well as Bowel and Bladder Dysfunction that is why I sm on Foley Catheter FR18 to avoid infections that may lead or triggered to a Relapse.
I was paralyzed since July 2018 and been ON and OFF in the hospital since then. Because doctors couldn't figure out what's really going on as early as they can from the day that my symptoms occur (December 2017). That is why I was left being DISABLED and as of today I am also having problems with my EYES OPTIC NERVE it is also affected, my eyes now are BLURRED AND LIGHT SENSITIVE though the Nerve is STABLE BEING PALE my Neuro-Optha is on guard on it to avoid more damage that may lead to BLINDNESS.
My symptomps starts December 2017 with just a simple lower back pain, I tried many Painkillers that I have and even Linament Oils to ease the pain, but still none of these are working. So,I decided to consult to a Nephrologist and told me that I had to undergo an ultrasound in the kidney and bladder, the result came and they found 0.4mm stone at the right side of my kidney. And been taking meds to disolve it.
As days past and months, It was February 2018 I experienced pins and needles on my feet until by March 2018 my left legs becomes weak so I transferred to see an Orthopedist and just given me pain killers agaiust told me that it is just because of my high sugar level because I was a Pre-Diabetic that time, but I know it is not that my symptoms get worst and worst. Out of nowhere I became constipated. And by April 19, 2018 I was admitted to the hospital due to Urinary Retention, Doctor again told me that it was just my stone passing through. By the month of May 2018 I am struggling hard because of my back pain and I can't barely walk and stand both legs are weakened I had to use a wheelchair by that time, and that was only the time that my Nephrologist refer me to a Neurologist who ordered an Cervical- Thoracic and Lumbar Spine with Contrast MRI Test. So, the month of June-July 2018 my lower limbs is really paralyzed and numbness is getting into my arms to left chest to my Heart, eye sight start to become blurred too.
I was so afraid, can't sleep and eat properly, stressed and anxiety comes into me.. It is really a real life horror for me and It's hard for me to accept that I am paralyzed, even get up and sit on my own coz' I also lost my sitting balance, even my writing's skills and typing skills. All what I've learned as I grow up was instantly gone just like a snap of a fingers.
Neurologist told me they cannot promise to make me walk again or cure me because the damage is fatal almost 80% of my body's ability is now gone and damaged. They test me for Lumbar Tap(Puncture), Blood Test (Aqp4 Anti MOG), Stimuli Response Test.
They also told me that they don't know or sure if my body will accept the treatment that the Hodpital have which is the IVSM or Intravenous Solumedrol it will be the FirstAid and free medication offered by Philippine General Hospital (PGH) where I was admitted. We cannot pay for Private Hospitals and Doctors as well as Medication like Rituximab a plasma exchange, Intravenous Immunoglobulin (IvIG), Eculizumab and Natalizumab. That's why we considered or choose the Philippine General Hospital (PGH) to fixed me, their Neuro-OPD and Neuro-Ophtha do check up and admission for free as per the Government Rules given by our President.
After my 5day Cycle of IVSM, my immune system is at risk and prone to virus and infection so my Neurologist advice me to go home and given me a lot of oral prescriptions and supplements which I am taking until now to prevent having relapse. But my family and relatives cannot contineously afford all my medical needs financially.
Imagine my situation as I found out that there is no cure with my illness wondering if I can get back to the OLD ME and for how long my family can support anf afford to buy my medicine and supplies. Or where in God's Hand we can get all what we need or what can I do to atleast help my Parents with this burden. I am so weak and hopeless that time I don't know what to do. At night, I always cried I just can't accept the realization, and I'm afraid to show it to people and to my family. I always use my Facebook Account (https://www.facebook.com/bez29.ellah08)
where I post all what's happening about me and my health, I wanted to show to people that I am getting myself back on track or staying positive. But they don't know that my heart is filled with negative thoughts feels like I am dying slowly from the inside.
But God is so Good to Me, he give me strength and hope, he show me the way, made me realized one day that I shouldn't stay for the rest of life like this, "I am a Strong Person, Positive and always findings ways to support myself". God gave me Strength and Hope it feels like He talked to me and said, "My Child put all your worry and problems upon me and I will be the one to handle it all. Trust my plans for you and I promise you will be Healed". Then from that day I feel like I was Reborn I always prayed to Him thanking him and apologizing for all I have sin.
And since then everytime that it seems there's no way to my problems, Blessings and Angels comes into me unexpectedly because God is in control. He never let me down. He made me things in other ways. Being not just a Person With Disability who is also having a Rare/Incurable Autoimmune Disease is very hard but God is with me and making all things easier and possible for me.
By the time I was in the Rehabilitation (February 2019 - March 2019) at the same hospital my Rehab Doctor (Therapist) told me that my program is only to help me make my upper body part stronger to support my lower limbd because there is no assurance that they can make me walk again. But I said to myself "No! I don't want to be like this for the rest of my life, I should walk or atleast can stand I must regain my sitting balance" then one day I try to move a toe, I always pushed myself to make it move and miraculously "I did!" I don't know what to feel my heart beats faster and from that day I always pushed myself to try other movements that I can though it is really hard at first". And as of today by God's blessing, I can get up on my bed alone, Sit without out balancing, eat on my own, Take a bath myself though still need to lift by my father and boyfriend to get to the bathroom, I can transfer myself from one place to my wheelchair, I can proppel on my own and most achievement I have now is I am starting to learn how to Stand and Walk again but due to this CoVid19 Pandemic Crisis I cannot start my Therapy Session.
And unfortunately I was exposed to the virus I was Positive with SARS-Cov19 Asymptomatic I experienced a 2 day on and off fever and chills and I also got flu, but Luckyly God help me make through he made things better and now I am a COVID Survivor. I can't imagine all what I've been through up to now and it's Purpose why I am still here breathing. Maybe one is to be n example or inspiration to patients like me living here in a country that has limited knowledge about this kind of disease aside from the health care that we need and can't afford because the preventative medication is too expensive in here and not all Neuro Doctors are aware of our illness.
My Motivation and Inspiration
My Motivation is my Family specially my Dad and my Borfriend, but as we can't control things and we don't know what will be going to happen next, my Dad past away last December 07, 2020 it breaks me so much that until now I am healing suffering from anxiety it feels like I was back from nothing and can't lift myself up again..