The Journey

The day is Sunday, July 20th 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, Temperature was 40+ centigrade, It was the dog days of summer!

On Sunday Aug the 3rd, I see the doctor again, I learned that high temps cause MS symptoms to exaggerate! The doctor extended oral solupred for 20 more days 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, discussed 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 seated on a wheelchair, I could walk with unilateral support but a wheelchair made mobility much easier

KAMSU

• 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, an Epic failure to follow Endoxan induction regimen ;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 couldn’t Distinguish a relapse, it alwayse was a slow progression that partially resets after pulse steroids from the very beginning…

I always heared how magical IV steroids is for MS patients, but for 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 3 months before starting Gilenya!

During Endoxan induction, I could stand for a few seconds without assistance…

Since March 2019, I could walk 5+ meters without aid, though not reliable with abnormal gait and very slow foot walk, but I feel vastly improved and so grateful!

To Be Continued..,