im not usually one to start blogs as i can never think of anything to write, but just lately i have been wanting to blog more and more and as i have had a lot go on with me over these last few months i would like to make a blog, not only to share what has been going on but to also raise awareness and contact people who are going through the same as me or just to speak to new people. what better way to do that then to start a blog.
i have just recently been diagnosed with multiple sclerosis (an illness that attacks the nervous system) i am yet to fully understand what will happen to me as MS is a very unpredictable illness and it affects people differently. i have relapsing/remitting multiple sclerosis which is the most common form of the illness.
now at 21 years of age i never expected something like this to happen to me and i still have not let it properly sink in.
it all started back in july/august time, i was suffering with numbness and tingling in my feet which was uncomfortable but was something i put down to bad circulation.
i was in a car accident in august and about a week after it happened, i started getting tingling in my right hand and lost feeling in two of my fingers, i went to the doctors and believed it was down to nerve damage from the car accident, i was given a months prescription of naproxin which helped clear it up. i was okay for the best part of a month until i started having problems with my right eye, my vision was getting blurred and everything looked grey i was worried as i had read on the internet that it could be MS, but me being a drama queen both me and my parents put it down to over usage of my contact lenses.
gradually my eye started getting worse and after just 3 days i could not see anything out of it there was just a black smudge, i phoned around opticians believing still it was my contact lenses but after explaining what was wrong the opticians suggested i go to A+E, it was then i started to worry.
what was wrong?
did i have a tumor? was the internet right and i actually had multiple sclerosis?
after speaking to a consultant at my local hospital in redditch she suggested i go straight to kidderminster as they have an eye clinic. my mom drove me to kidderminster. after having a meeting with the consultant he suggested i have an MRI scan, having never had an MRI scan before i felt terrified i didnt know what else to do but to burst in to tears, i didnt want to show weakness but was so unsure of what was happening to me and was just full of fear.
the scan wasnt as bad as i expected it to be but it was just a waiting game to find out what was wrong with me, i had to wait an hour plus for the results, the doctor explained i had a condition called optic neuritis which in non fancy terms is inflammation of the optic nerve, i knew that optic neuritis was a condition related to MS but as an eye doctor the consultant was not able to tell me anyhting more so he referred me to a member of the neurology department in worcester.
i waited around 2-3 weeks for my appointment to come through for worcester, i was having regular check ups with the eye doctor in redditch hospital, my eye was improving but at a very slow rate and due to the inflammation in the optic nerve i was suffering from really bad headaches that were making me feel sick.
on the 30th october 2012, i had my consultation at worcester and was feeling very nervous, i had already made myself believe i had MS due to having so many of the symptoms but was told to think positively, my mom told me that it was very unusual for people the be diagnosed with multiple sclerosis after just one attack so believed it would be a long waiting game, when at the hospital i was asked to explain all my symptoms to the consultant, he showed me my brain scan which revealed a lot of lesions on my brain, he diagnosed me with multiple sclerosis.
i was in shock.
i didnt really take in much after that as i was too shell shocked, it was confirmed but it just wasnt right, i didnt want to hear that i had this illness. my nan was diagnosed with multiple sclerosis and unfortunately for her it shut down her whole nervous system very quickly, she passed away due to the fact her body was so weak she found it difficult to carry on fighting, i had only known my nan to have this illness and seeing how it had attacked her i dont want the same to happen to me.
i am now waiting to hear off the queen elizabeth hospital regarding treatments, i have found a very useful website www.mssociety.org.uk which has helped me find out so much information from a good diet to good exercises, i urge anyone who is suffering from MS or has a family member who is please look at this site it will really help you as it is crammed full of information.
i really thank everyone who has taken the time to read my blog as it has taken a lot for me to write it, i am still under an attack at the minute which is making me suffer from very bad fatigue but i still get up and go to work everyday and carry on with my life, with a smile on my face. somedays i find it hard but with the great support of my family and work friends it has made it easier for me.
i have not written this blog post for people to feel sorry for me because that is not what i want, i just want to raise awareness for this illness and help give people a better understanding.
thank you :) xx
So glad you are writing about your journey. It helps so much. It certainly did for me during my first years living with MS. I look forward to your next post. Best, Christie
ReplyDeletethanks so much for the comment i am already feeling more positive after only one blog post. i am also looking forward to writing my next blog post :) thank you for taking the time to read it x
DeleteHi there, it's a good thing that you have written it down, as a fellow MSer, well done.
ReplyDeleteI am 33 and at 26 woke up one morning in LA and I could not move my left leg, it had stopped working.
I too put it down to bad posture/circulation etc.
My road took me a year to be diagnosed, in the USA I could not afford the doctors so, when I came back to the UK for visa reasons I went to the docs here.
I can only tell you that you were very lucky to have found a doctor who read your symptoms and said an MRI had to be done. I begged to have an MRI, i was having incontinence problems that were killing my life. I have not been able to run since 2007.
In the end, I had to go to Italy and see a doctor as I was refused an MRI here in the UK, they told me I had a bad back and needed physio... I insisted that i should have an MRI, my referral was met with refusals.
A friend of mine from UNI told me her dad was a doctor in Italy and should go see a real doctor in a country where you can't be called a doctor so easy, like here in UK.
When I saw the doctor, she looked at the back of my eyes, told me I had a red inflammation at the back of my eyes and that I had MS. She asked me to do an MRI to confirm it, I did that the next day and it was confirmed. I remember my first MRI, I cried like a child in fear, I was alone with no family in a country I didn't speak the language so well.
I can only tell you that those doctors in Italy saved my life, I can now walk quite well, I can't run but, I don't need the sticks anymore.
The dizziness will always be there, the blurred vision is just part of the game, you do get used to it.
After my MRI I spent 4yrs in Italy being treated via first rebiff, it was bad and never worked for me, self injecting was not so nice! I had a number of relapses over a 3 month period. In the end I found that Tysabri works the best and I have been on it for almost 4 yrs now.
I can tell you that the UK system is cold and to put it in a word, useless! However, I know that we each have a different experience with MS.
I travel back to Italy every 5 weeks for treatment, I love my doctors there. I knew I would never be able to leave them when they gave me their home numbers/mobile numbers/emails and any questions I had, they answered in person with care. Here in the UK, they give you a child's book and the consultant (I call them fake doctors) is just another person that needs a slap for his/her over paid job and lack of human touch.
I want you to know that, your not alone, your part of a global family of around 2million people. We are almost the worlds smallest minority, fear not, your special and no illness can take that from you.
Oh, one more point, laugh as often as you can, don't stress, a neurological illness is directly related to stress. Too much of it can trigger relapse so, learn to brush your self off and try again.
I look forward to your nxt post, be brave, your never alone.
Michael
thank you so much for the reply, your story has been very interesting to read, its sad to hear that it took the doctors so long to give you an MRI i feel glad in the fact i got mine so quickly as the suspense of waiting to know would have been just awful!
Deletei have not yet seen the consultant regarding any treatment but feel as though self injecting will not be my thing im far to squeamish.
thank you again for taking the time to read my blog it is really appreciated!
i look forward to writing my next post, take care :) x
Stay strong sweetie! Keep staying positive though this challenging illness. Eat clean & healthy and most importantly STAY ACTIVE!! You have love ones who are your SUPPORT TEAM!! You did very well with your first blog post.....THANK YOU DEARIE!!
ReplyDeletethank you so much for taking the time to read my blog, i enjoyed writing it :) and thank you for the positive comments it really means a lot!
Deletei really do have a great support system with all my family around me and they are helping me to stay positive on a daily basis, there are times i get down but they are always there to pick me up!
thank you again x
Hi Lonie, I know this must be quite overwhelming for you at this stage. I just wanted to say, there is hope. There are ways to manage MS and I've started a website to support other ladies with their diet, its called MS Diet For Women (http://www.msdietforwomen.com). I would love to connect with you more! Kim
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