The day is Sunday, July 20 2014, I feel very worried leaving home to see a Neurologist, that is a really horrific situation, I just finished general secondary exams, I should be celebrating!
It was a relieving visit anyway, talking about my very brief medical history, doing a typical neurological exam. Checking the lonely MRI, Reassuring the anxious-faced me, the doctor said everything will be fine and started talking about the medication plan, A 5 day pulse IV corticosteroids followed by 12 days of oral steroids, To me that meant one thing: The holiday season is over!
The next day I was admitted at the hospital for a week to have the weird IV infusions, The first day was heavy on me but next days quickly passed, Everything went as planned except that I didn’t feel much difference, I could hardly walk without aid! but I was home and tomorrow is Eid Al-fitr, taking the oral tabs is much easier, That was relieving, But I even felt worse than before because of the very hot weather, Temp was 40+ centigrade, It was the dog days of summer!
On Sunday, Aug 3 I see the doctor again, I learned that high temps cause MS symptoms to exaggerate! The doctor extended oral solupred for 20 more days after seeing that I didn’t get much better, later on solupred I slowly recover most motor abilities but fine ones took the hit and never came back.
I could say it took me more than 2 months of Solupred to be able to walk without any assistance, carefully but confidently, slow and steady.
Here’s a brief list of next doctor visits and Meds:
- Aug 24: 12 more days of Solupred
Oct 27: 5 1gm IV Solumedrol followed by 20 days of Solupred, discussed starting Betaferon
- Jan 31 2015: I started taking Betaferon , a SC injection for 3 days a week
- Mar 31: Continue on Betaferon, to start Fampyra, next appointment Oct 3
- Sept 7: Solumedrol 5 days then Solupred 12 days, disscussed stopping betaferon & starting gilenya, Oct 7 started Fampyra 2 Tabs a day for 5 weeks then stoppet it.
- Jan 27 2016: Jan 1 Last Betafron injection, On Jan 13 VZV IgG was negative, to start gilenya after VZV vaccination
- Apr 3: Finally started Gilenya
I continued on Gilenya for 2.5 years, Never got any new symptoms but slowly getting worse, never restoring any functions, Later on I became wheelchair seated but not bound, just for easier mobilety
- Oct 24 2018: Stopped Gilenya, to start Endoxan after 2 months washout, IV Solumedrol in between
- Dec 30 2018: 5 days IV Solumedrol then 1gm Endoxan, Epic failure to follow Endoxan induction regimen, At MUH BTW ;D
- Feb 6: 5 days 1gm Endoxan induction then 1gm/month for 5 months
- July 14: 3 month Endoxan washout before starting MabThera
Comments on journey
At first I thought I have RRMS, but later I believe it was either an aggressive RRMS that quickly transitioned to SPMS in less than a year, or it was PPMS since the beginning…
I didn’t have a distinctive a relapse, Just a slow progression that partially resets after pulse steroids…
I always heared how magical IV steroids is for MS patients, but to me it wasn’t that effective…
At first, I couldn’t tell which side of my body is weaker, later the right side started to get weaker than the other and is still so…
Betaferon only gave me the flu-like side effects…
Fampyra didn’t work at all…
I took nothing for 4 months before starting Gilenya!
Since March 2019, I could walk 5+ meters without aid, though not reliable & abnormal gait and very slow foot walk but I feel vastly improved and so grateful!
To Be Continued..,