My Journey with Two Autoimmune Disorders
I am an ex-CEO, a digital professional with 19+ years of experience, and I suffer from two autoimmune disorders – MS and Crohn's. And I feel proud to share my story as I still stand strong and yet fighting the demons.
Nine years battling two autoimmune disorders
So here we go... My journey of nine years battling with two autoimmune disorders and more... The first time way back in 2004, I had numbness and tingling sensation in my hands and feet, however, it faded off in a week or so. The doctors called it nerve compression. I again got the same symptoms in 2006 and numbness grew upwards. We visited an orthopedic where no diagnosis was found and reports all clear.
I was asked to visit a neurologist and after examining wrote on his prescription saying "probable autoimmune disorder" with no tests written and no prescription. The biggest joke was, "WHAT IS AUTOIMMUNE?" We left it at that and again within a month, the symptoms receded itself.
Lesions on my brain and spine
Now here is where the story begins. In 2009 I got a bad attack where I was numb bottom up to my waist and hands and had no balance. Suddenly I realized I can't walk on the roads and I needed support. It only worsened and I thought another nerve compression and visited my orthopedic again. This time again all tests were clear but the doc was really considerate and concerned (for a change). He suggested there is something wrong as my condition worsened and he suggested an MRI. BANG we go. Lesions in my brain and spine... YEAH, I have MS 😂
I was asked to get hospitalized immediately. My treatment started with Solumedral IV and in 7 days I had put on 9 kgs. Well yes. After a while, the symptoms were arrested and slowly I was close to normal.
I accomplished what I was told I could not
I was told to leave my job. Knowing myself, I knew 'it was a joke.' Of course, I can work and I did. I was featured as the "Top 10 Most Powerful Digital Women." I was also featured as "Top 20 International Digital Marketers." Yes, I brag because I accomplished what I was told I could not.
While I was still dealing with MS and understanding the ailment and accepting the change... Here came another symptom. I was passing motion 17/20 times a day and passing blood and mucus. Went back to the doctors and their answer was, "She has MS and the brain sends wrong signals hence nothing to worry..." Really? Running to the pot 17 times and passing blood and mucus is normal? Doctors refused to even look deep into it till the time I had to push them and the doctors agreed for an endoscopy... Guess what! YEAH, I have Crohn's too 😄🖐
Amidst all this, some doctor in Australia came up with an experiment called CCSVI. Their study said when your jugular vein is blocked often you get MS and if it can be opened there is a high probability to get cured. As desperate we were handling two sharks we went for the investigation and once again I was told I had a 80% blockage in my jugular vein and, irrespective of whether MS can be cured, it's an abnormality and had to be corrected. We went for it. The balloon did not work and they had to insert a stent to open the blockage.
After 6 years now I am living with a 100% jugular vein blockage. There were two doctors in India who practiced CCSVI. And the same doctor now says it's ok nothing to worry 🙄🙄pardon me? Yesterday it was an emergency. Want to know the reason? The experiment failed so they don't want to take it up and here the other doctors have not heard about CCSVI. Hence they have raised their hands too.
Shuttling between neurologists and psychiatrists
At the beginning, my MS attacks were once in a year or so and now the frequency has increased with a laundry list of other symptoms which don't fall in the doctors dictionary. So they believed my mind was playing tricks. I was stated depressed and sent to a physiatrist, pumped with medication which only had painful side effects. I would take 12 antidepressants and sleeping pills, administered ketamine only to stay awake all night. I weighed 78 kgs from my natural weight which had been 50-53. So I am mentally and clinically depressed according to the doctors 😂.
Ever since I have been shuttling between neurologists and psychiatrist. The psychiatrists said I am depressed and when there was no change I was sent back to the neurologist and again sent to the psychiatrist as the symptoms I have don't fall in their dictionary of autoimmune disorder.
Neurologist would stop all my antidepressants overnight (any antidepressant had to be tapered) and was left with vicious side effects:
- Throwing up blood with food pipe ruptured
- Sudden black outs (broken my teeth cut my head injured my knee)
- Buckling of knees
- Severe headache
- Short term memory loss
- Difficulty in comprehending
- Going blank
- Extreme fatigue
- Can't focus
- Slurr while I speak
- Forget as I talk
- No memory from as yesterday
Sure... I am depressed 😃
Learning to ask questions
My last attack was five months back and I was hospitalized. I went walking but came back on a wheelchair.
Today I am mentally screwed and physically burnt out. There is no neurologist I have not visited and a psychiatrist I have not seen.
Nobody can understand more than yourself
As rightly said, "A patient cured is a client lost so why cure 😊" I am not depressed it's you doctors out there make a sane person insane.
In these 9 years what I have learned is to understand your body. Nobody can understand your body more than you. So learn to ask questions... Ask for rationales. Defy the doctors if needed. Don't be an object to be tested.
BUT... I am unstoppable!!!
Does listening to music help lower the severity of your stress or MS symptoms?