I am a 30 year old female from Lahore, Pakistan, and I would like the first post of my blog to be my story with MS (Multiple Sclerosis) so far. Only a bunch of my friends, some close relatives and of course my family know my story, but I feel that sharing it with others will not only be helpful for me, but it will also be helpful for other MS patients reading this.
It all started in October 2009 when I began experiencing sore and puffy eyes along with blurry and hazy vision. My eyes started to get painful in a couple of days. I had never experienced anything so painful before and I could hardly keep my eyes open while working on my laptop so I visited an ophthalmologist. He diagnosed me with Retinal Vasculitis, which is an inflammation of the blood vessels of the retina, and prescribed me a heavy dose of oral corticosteroids (starting with 50mg daily). The right eye was more affected and I could feel a significant difference in the vision between both eyes. Vasculitis is an autoimmune disease and it has no known cause. I was on medication for 2 months and my treatment completed by 30 December, 2009. My eyes felt all better again.
Things only seemed to stay good for another 4 months, and in April 2010, I started feeling numbness in my toes and feet. The numbness was accompanied with loss of sensation and it became difficult for me to walk steadily on my feet. It was not painful, but it was annoying and I felt like a clumsy child still learning to walk. At times I would even trip over, especially when trying to get up from the floor. My coordination was affected and my legs felt as if they could not balance me properly while walking.
I consulted a neurologist who recommended me to get an MRI done of the brain and cervical spine just to make sure if it was MS or not. But I kept the thought of MS out of my head and avoided the MRI. I visited another neurologist instead who advised me yet another high dose of oral corticosteroids (starting with 40mg daily). I took the medication for 3 months, reducing it slowly as advised by the doctor. The numbness, tingling and loss of sensation began to reduce but I started experiencing numbness and weakness in my right hand this time when the dosage was reduced below 20mg. My hand started becoming weak day by day and even doing daily chores like brushing my teeth, combing my hair, cutting fruits or vegetables and typing became a problem for me.
I visited my neurologist again and he increased the dosage for oral corticosteroids back to 40mg daily. After reducing the dose gradually, he kept me on a dose of 20mg daily for several months, but I never felt good and ‘normal’. I started noticing different signs of my illness now. I could not get up and start walking quickly if I wanted to, getting up from the floor was still a problem and if I kept sitting in the same position for a while, my legs would kind of ‘freeze’ and feel like they were not there and I had to move them to get the blood flowing through them before I could feel them so I could start walking. I also found out that I could no longer run or walk quickly because my legs would become all wobbly. I visited my neurologist again and he too asked me to get an MRI done.
I was finally diagnosed with Multiple Sclerosis when my MRI results came from the laboratory on 31 January 2011. It was my fathers birthday that day and I came back home from the doctor depressed, shaken and broken. I had read about MS over the internet and even though I had been experiencing all the symptoms I read about, I never accepted the fact that I could actually be suffering from MS!
Since my diagnosis, I have had 2 major relapses, one in April 2011 and the second in June 2012. The first relapse affected my legs and my ability to walk, whereas the second one caused impairments in my hand functions, but I recovered from both relapses. I’ll write about both the relapses in detail in another post.
During the first year of my diagnosis, I realized that there was very little support for MS patients in my country. Even though there is no known cure for the disease, I do read about the different treatment and therapy centres in the UK, USA and other developed countries of the world which provide support and services to people living with Multiple Sclerosis. Treatment centres aside, there wasn’t even a proper website to create awareness among people about the disease. So I took the initiative to launch the Society for Multiple Sclerosis Patients in Pakistan (SMSPP). I do plan to add an Urdu version of the site and also add a forum for the local community.
Despite the problems I have been facing the last 3 years due to MS, I do believe that life is still possible with MS. You may feel weak and depressed, but MS is not the end of the world! Have faith, be strong and you might just discover a new purpose in life. For me, this new purpose is to educate people, spread awareness and have a plan to make the first MS treatment centre in Pakistan.
Very inspirational story! With MS it’s a fight for survival. Keep it up!
Thank you Diane! Yes, every day is a new struggle with MS.
Admirable resilience. Keep it up, and I am here to help you succeed in your mission.
You are brave! Stay optimistic!
Thank you friends!!
[…] General elections were held in Pakistan, and that is the date when I had my last MS relapse. I was diagnosed with Multiple Sclerosis on 31 January 2011, more than three years ago, which was a life turning event for me. In these 3 […]
[…] I was diagnosed with MS in 2011, I started this Society with the hope to create awareness about Multiple Sclerosis, help MS […]
Imaaaaaan alot of prayers for u u r ever favourite of mine.. u r a good personality and maY God bless u ever.. get well very very sooon wanna seee u working again plzzzzzz
Imaaaaaan alot of prayers for u u r ever favourite of mine.. u r a good personality and maY God bless u ever.. get well very very sooon wanna seee u working again plzzzzzz…
ayesha, a lot of readers are mistakenly mixing me with Iman. This is Afroz Syed, president of the MS Society in Pakistan. I was diagnosed with MS in 2011.
[…] and woeful aspects of life. Following numerous painful visits and investigations, I was finally diagnosed with Multiple Sclerosis. I recalled the endless days I spent with new symptoms that could every time fit into some other […]
i want to contact you. My elder sister has been diagnosed with MS. Our whole family is very worried about her. she is married having to sons (13/10 years old). she is unable to carry out house work. i am working at HEC Degree Attestation Cell. Daily i discus with MBBS doctors but no one gave me satisfactory answer. I read out internet but much disappointed of non availability of her treatment. i read out your post in the hope that probably i find out treatment, but at the end no treatment. kindly help and guide us……………… give me you mobile number on 03469220442……………………..regrad
[…] political party by going and attending jalsas or by becoming a TR (Tabdeeli Razakar) because of my multiple sclerosis diagnosis 3 years ago, I can still do my part by reaching out to my readers and convincing them to vote for […]
[…] President of the Society for Multiple Sclerosis Patients. The video talked about how and when I was diagnosed with MS in 2011, the challenges I face as an MS patient daily, and how to live a better life with […]
Thanks for sharing your thoughts about Multiple Sclerosis.
[…] society was established in 2011 by Society President Afroz Syed after she was diagnosed with MS on 31 January 2011. It was registered with the Registrar Joint Stock Companies under the SOCIETIES REGISTRATION ACT, […]
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