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January of 2020, the doctors had finally found what my condition are after being misdiagnosed since June of 2019.
Sensorimotor Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare neurological disorder that causes a mass inflammation of the nerve roots and peripheral nerves. It’s a autoimmune disorder where my own immune system attacks and destroys the protective cover (myelin sheath) over my nerves.
It all began on June of 2019 when I woke up with an electrical shock that hit my left toes. I always believed I had a good pain tolerance, but this was another level of pain. It calmed down after a while, but then the following nights, I experienced this “shock” of pain consistently the nights after. This same month, I was also assigned to a hospital for internship in a province in the Philippines, JBLMRH of Pampanga. I was to take a physical exam before internship and that’s where the diagnostic center found I had a 4+ glucose in my urine sample. They prompted me to take a Fasting Blood Sugar (FBS) test and an HbA1c test which determines my average blood glucose of the past 3 months. I was shocked to find a 10.4 HbA1c where I knew 6.4 determined to be diabetic.
I met with an Endocrinologist at UST hospital in Manila and he diagnosed me with Diabetic Peripheral Neuropathy after sharing the tingling electrical storm I felt with my feet that can suddenly turn into a lightning whiplash strong enough to immobilize me mid-walk and keep me awake every single night. The doctor assured me that as long as I managed my blood sugar, the pain will completely disappear. He then told me to lower my carbohydrate intake to 140-160g carbs a day. That wasn’t enough for me. Day 1 onwards, I went full-on keto and never counted anything over 15g carbs for a single day.
3 months later, I went from 10.4 HbA1c to a 5.8!
Even now, I’m very proud of my achievement through self-control to change my life.
But the pain never left like the doctor told me it would.
After all those months, it had only progressed.
I worked at JBLMRH in Pampanga for 6 months (June to December 2019) as a MedTech intern, and there I reached out to doctors and even my MedTech staff of my condition. I was brushed aside time and time again with “You’re too young to be experiencing neuropathy.” Day in, day out, I was in constant pain and felt like even in a hospital I couldn’t get help even though the staff continuously mention my concerning 20kg weight loss in 3 months and odd walking habit which should’ve prompted them to take me more seriously.
Come the end of internship and finally graduating as a Medical Technologist, I was looking toward pursuing medicine and becoming a doctor, but I made a promise to my girlfriend, Leslie, to seek help once more at St. Lukes Medical Center where she believed the doctors will take me seriously and won’t dismiss my pain and changes where it had left me giving up asking for help before.
Came January 2020, my girlfriend and I saw a neurologist, Dr. Manuel who then gave me my first relief for the neuropathic pain I had to deal with for almost 7 months. Dr. Manuel didn’t believe my initial diagnoses from the other doctor because my diabetes was completely controlled and reversed. She then got me to take a EMG (Electromyography) and NCV (Nerve Conduction Velocity) test where my fellow MedTechs that did the test were confused to see such little reactions my nerves had.
I was admitted and stayed at St. Lukes Medical Center from January 20 to conduct a series of tests. I had three dozen test tubes of blood taken from me for the following days and nights, I was taken to the Operating Room (OR) for a Sural Nerve Biopsy where they removed part of my nerve from my left foot for electron microscopic examination, and also for a Lumbar Puncture to examine my CSF fluid.
All tests came back positive for a definitive diagnosis of CIDP.
January 28, 2020, Dr. Manuel told me she’s very hesitant to give me the corticosteroid, Prednisone, because it will cause my diabetes to go crazy. I was desperate for the pain to stop and pushed her to prescribe me the drug that will calm my hyperactive immune system that’s bent on destroying itself any further. She knew that it will take a toll on my body and referred me to another endocrinologist, Dr. Fontanilla, who prescribed me my very first bottle of insulin.
This blood glucose battle has been to a place I have never been to before. For the first time in my life, I hit over 300mg/dL with a KETO-meal that only included the glucocorticoid. I injected 5 units, then 5 more units, and then 10 units of insulin but my blood sugar just would not go down! For the first time since I started this battle, I was losing against my diabetes. It did not get any better.
Because of the high blood glucose, the operation site on my foot just won’t heal. I would continue to bleed daily.
Dr. Manuel told me of another option which is the best option for all my medical needs - the IVIg (Intravenous Immunoglobulin). I’ve read and heard many times over and over how this treatment will give my life back. At the cost of 450k-600k php (8800-12000 USD) per treatment which is as much as 3 to 4 times a year.
Today is February 10, 2020
My left foot has lost almost all feeling of senses and touch and have a “drop foot” syndrome due to the weakness,
My right foot slowly following losing its motor and sensory,
Both hands are experiencing the whiplash lightning or bullet ant bites of pain that constantly get in the way of my piano playing which is my passion and hobby during these hard days,
My vision is getting worse as the days go by,
I’ve lost and continue to lose weight even though I’m now becoming underweight for my height,
And I feel like after all the pain, all I can feel is the numb and dead remains of all the damage due to this degenerative disease.
I’m still walking in crutches with my left foot raised where the healing is extremely difficult,
I’m still taking prednisone daily for the CIDP,
I’m still taking my pregabalin 3x a day for pain management,
I’m still taking amitriptyline 2x a day for even more pain management,
I’m still injecting up to 30 units of insulin a day along with my metformin 3x a day,
I’m still taking agmaset, 5g vitamin B12, CoQ daily plus all other supplements,
I’m still pricking my finger for blood tests 6-10x a day.
I’m still trying to fight this disease that I know I can defeat.
This experience has brought my family closer together more than ever, and it opened doors to people that I’ve met this past month that only further pushed me to not just becoming a future doctor, but to become a passionate one.
Thank you so much for taking your time to read, and thank you from the bottom of my heart to those who reached out as I extend my hand out for help.
This is a degenerative autoimmune disease so every day, my body continues to degrade until both the senses and my ability to move my arms and legs dies. The IVIg treatment will stop the progression from getting any worse. For example, I've lost the use of my left foot and I will never be able to use it like I had before, but we can stop this disease from progressing to my right foot and the rest of my body.
The goal of 1,800,000 PHP should hopefully be able to cover the cost of the treatment and other medical expenses for the year.
- Philip Joseph Tumacder
- Justus Franklin Tumacder
- Funds captain
April 8, 2020 - Post Chemo update + Frequently asked questions + receipts!Update posted by Philip Joseph Tumacder at 03:38 pm
As much as I wanted to update immediately after the treatment, I wanted to personally assess what may have changed within a couple days. I'm happy to announce that the pain has definitely lessen! There is still obvious pain, but as Dr. Damian, Dr. Manuel, and Dr. Hufana explained, and. . . . .
March 30, 2020 - It's finally happening!Update posted by Philip Joseph Tumacder at 09:09 am
I was supposed to have my treatment weeks before, but you all know the case that is unfortunately plaguing every nation today.The rampage of the Corona-virus has made it difficult for many of us such as those with chronic pain and illnesses, cancer patients, and a slew of others to. . . . .
March 2, 2020 - Physical Therapy and treatment option!Update posted by Philip Joseph Tumacder at 09:33 am
THIS WEEK I'LL OFFICIALLY BEGIN PHYSICAL THERAPY!Dr. Hufana (neurosurgeon) along with Dr. Manuel (neurologist) have been always reminding me that I'm in a very special case with numerous illnesses to deal with along with the greatest fight - CIDP. The one we didn't foresee was my quickened inability to walk.. . . . .
February 18, 2020Update posted by Philip Joseph Tumacder at 03:07 pm
For the past 2 weeks, I have been trying to taper off of the corticosteroid (Prednisone) and switching to the chemotherapy drug (Azathioprine) as the immunosuppressant since the damage being done through the predinsone towards my diabetes blood sugar has been too much for my body to handle even with. . . . .
Additional Payment Modes for those without PaypalUpdate posted by Leslie Entila at 03:02 pm
Since not all our friends have a Paypal account, you can also opt to donate via BPI and Gcash:BPI Account Name: Leslie Jan A. Entila Account Number: 3069983285Gcash Account Name: Philip Joseph U. Tumacder Number: 09667986672Thank you everyone for the support! 💖
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