I debated about half a day about making this post because it has nothing to do with books. And then I thought "why not?". People will want to know more about you. They might be interested in knowing your story.
So, welcome to my life with ms.
When were you diagnosed with ms?
I was officially diagnosed on September 30, 2009. I was 30 years old. I had my first attack in late February/early March of the same year however but it took a while, months, before I knew what was up with me.
There are four kinds of ms:
- Relapsing-Remitting MS (RRMS)
- Secondary-Progressive MS (SPMS)
- Primary-Progressive MS (PPMS)
- Progressive-Relapsing MS (PRMS)
I have RRMS. People with RRMS have temporary relapses, flare-ups or exacerbation, when new symptoms appear. Relapses usually last a few days or weeks. Remission is when your symptoms disappear but the illness is still active and can progress. Damage to nerves can still happen but you won't feel any symptoms.
Why did your diagnosis take so long?
Simply said, I am a case of file falling between the cracks and forgotten there. I actually had my second flare-up a couple days after losing my cat (on 9/11 weirdly enough) and when I went for a consultation, it was clearly written in the file, with question marks, that I could have ms. The MRI I had done in March showed I had scar tissue at the nape of my neck, proving the diagnosis.
Also, this is the type of illness that's invisible. I could have had it for years and years and felt nothing at all. And then suddenly, wham! something happens that affects me physically. I've had my vision and speech impaired a bit once but mostly right now, I've been numb in different parts of my body.
How did you get ms?
I don't know. Not the why, not the how. The theory is that there are many possible factors, along with genetics, an infectuous illness or the environment I live in.
MS can occur at any age but people between the ages of 15 to 55 or the most commonly diagnosed. Women are more than two to three times as likely as men are to have RMSS.
Having had chickenpox or varicella as a kid might have done something to my system. At the time of my diagnosis, I was alone. Since then, my dad got diagnosed, one of his brothers got something similar and one of my mother's cousins on her mom's side also has ms.
As luck would have it, I'm a woman living in North America, diagnosed at the age of 30 with a family history... Yay me!! đ
What made you see a neurologist?
I was referred to one by the emergency room doctor I went to see when, after two weeks, my body was still numb on the right side only, starting below the shoulder down the tip of my fingers, my torso, down my right leg to the tip of the toes. I didn't have the feelings of ants crawling inside like you usually get when you're numb. I wasn't in any pain, I didn't loose much sensation but the cold water was warm and the hot was hot. I could drive, walk up and down stairs, walk normal. It was just a weird feeling though.
What are your symptoms now?
I'm going through a flare-up right now so my right arm and leg, including fingers and toes and the right side of my head are a bit numb. I started feeling those on Monday. Again, no ants crawling inside for the feelings to come back as usual. My second attack to life, when I got the diagnosis, my speech was impaired a bit but not all the time. I had a feeling at the bottom of my tummy that would come up and then I would speak weird for a minute and I'd be back to normal. And, once in a while, my vision would double for a few seconds. I haven't had either since. Fatigue is a symptom that tens to stick with me, however. I would get up and 30 minutes or so after, I would go back to bed feeling as if I hadn't slept for days.
How do you manage your illness?
How did you get ms?
I don't know. Not the why, not the how. The theory is that there are many possible factors, along with genetics, an infectuous illness or the environment I live in.
MS can occur at any age but people between the ages of 15 to 55 or the most commonly diagnosed. Women are more than two to three times as likely as men are to have RMSS.
Having had chickenpox or varicella as a kid might have done something to my system. At the time of my diagnosis, I was alone. Since then, my dad got diagnosed, one of his brothers got something similar and one of my mother's cousins on her mom's side also has ms.
As luck would have it, I'm a woman living in North America, diagnosed at the age of 30 with a family history... Yay me!! đ
What made you see a neurologist?
I was referred to one by the emergency room doctor I went to see when, after two weeks, my body was still numb on the right side only, starting below the shoulder down the tip of my fingers, my torso, down my right leg to the tip of the toes. I didn't have the feelings of ants crawling inside like you usually get when you're numb. I wasn't in any pain, I didn't loose much sensation but the cold water was warm and the hot was hot. I could drive, walk up and down stairs, walk normal. It was just a weird feeling though.
What are your symptoms now?
I'm going through a flare-up right now so my right arm and leg, including fingers and toes and the right side of my head are a bit numb. I started feeling those on Monday. Again, no ants crawling inside for the feelings to come back as usual. My second attack to life, when I got the diagnosis, my speech was impaired a bit but not all the time. I had a feeling at the bottom of my tummy that would come up and then I would speak weird for a minute and I'd be back to normal. And, once in a while, my vision would double for a few seconds. I haven't had either since. Fatigue is a symptom that tens to stick with me, however. I would get up and 30 minutes or so after, I would go back to bed feeling as if I hadn't slept for days.
How do you manage your illness?
- 1 immunomodulator with anti-flammatory properties pill called Aubagio daily.
- 2 pills of 1000 UI of vitamin D daily.
- I see my neurologist twice a year.
- I have an MRI done yearly.
- I try to stay positive all the time.
- I have a full-time job as a receptionist.
- I drive my own car and go along my life as normally as others.
- I take naps from time to time to help go through the day.
What about the future? Do you have any concerns? Is there a cure?
That first year, I thought my life was over. I couldn't have a family by chance of giving the illness to my kids. I would end up disabled and a charge for someone. Couldn't keep my job. Couldn't make plans. That changed fast though. I decided not to over think it and not stop myself from living. make plans because you feel good and you're gonna feel good later and if something happens, modify your plans and keep going.
No, there is no cure yet because they still cannot pinpoint exactly where it's coming from and why. There's a ton of research for it though and the medication is so much better now to help and control it. used to be a time doctors would pat you in the back and wish you good luck!
No, there is no cure yet because they still cannot pinpoint exactly where it's coming from and why. There's a ton of research for it though and the medication is so much better now to help and control it. used to be a time doctors would pat you in the back and wish you good luck!
That's it, that's my story.
If you would like to know more about it, I will be happy to answer your questions.
Don't forget to like, comment and follow the blog ♥
Don't forget to like, comment and follow the blog ♥
Good post. I feel like "MS" is a term I hear/read about a lot and I don't really have a full understanding of what it means to the person that has been diagnosed with it. Thank you for sharing. :)
ReplyDeleteNobody grasps this illness for what it truly is. Not two people feel it exactly the same way. Professional and researchers have no idea of the exact source so they can't create a cure for it yet. No two person feels the exact sames things and there are so many symptoms that are similar to many other illnesses, like diabetes, that it's really hard to pinpoint what ails you.
DeleteThank you for sharing. A friend I know has MS and I know how bad it can be. Thank you for sharing your story
ReplyDeleteThank you for reading :)
DeletenasrecWcia_ma Shannon Vang Here
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