24

[aislinngrace]

Hello, Everyone!

My name is Aislinn (pronounced Ash-lyn for my non-Irish people.) I was born and raised in Connecticut spending summers and sometimes holidays in Ireland where my father is from and his family is. I'm 24 years old.

On November 23rd (I remember the day, because it was the 50th anniversary of Doctor Who and my friends and I were watching it together.) I had a headache and chose to wear my glasses -- new blue Warby Parker's I wanted to show off to my bestie. While I was driving there I got annoyed because I had rushed to put makeup on and blinked and got mascara on my glasses. At a red light, I stopped and cleaned them and put them back on, but the smudge wasn't better. I spent the rest of the afternoon irritated that my glasses were so smudgable. I had plans to go to see friends in NYC that night, so stopped on my way home to switch to contacts. But, the white fog in the center of my left eye was still there. Obviously, this resulted in inner panic and calling my parents..."WRONG. THIS IS VERY WRONG." The only people I'd ever known who lost their vision suddenly had brain tumors.

I spent the next few days in eye doctors offices, becoming increasingly panicky as I learned there wasn't anything wrong with my eyes. I suppose now is the time to tell you that I have anxiety issues or, as my father would say "The Worried-est Girl in the World."

Long story short, my MRI showed a number of white plaques (this is one thing that SCARED me, I felt like there were A LOT is that bad? I don't know how many maybe 10? Three showed up very bright in the contrast MRI.) A week after Optic Neuritis started to effect my left eye, I started a five day round of SoluMedrol. By Monday my vision had fully returned (it still kind of gets blurry when I get too hot or if I agitate that eye.) That Tuesday, I had a spinal tap which they botched big time (four times missed before sending me up to Interventional Radiology to get it done-- if you get a spinal tap and it hurts they are doing it wrong, so tell them to stop, don't try to be a hero like me.)

On Tuesday I went back to work, and got the devil of all headaches, wound up having my mom come pick me up after I tried to drive home and decided I was endangering people - I felt like I was going to faint or have a seizure! Went to the ER and they said I was one of the people who got a PDPH and did a bloodpatch. Which made me feel much better, but I had had such a bad headache that it actually hurt to touch my skin around my neck-- my muscles had been so tight I had been in so much pain!

All in all it was a really emotionally upsetting and scary situation. I didn't feel good and I was getting in one of those "am I always going to feel like this" fear states. It wasn't good.

LP came back negative for any infections (there's a strain of Lyme's disease here in CT that mimics MS almost exactly) and a cervical spine MRI revealed one lesion (I didn't actually see that one, but they said it was there.) So, I got my definitive diagnosis last week. Currently, I'm having some anxiety, ice pick headaches , and some twitchiness, but I'm unsure how related these are to actual M.S. symptoms. The doctors are testing me from JCV to see if I am eligible for Tysabri and also talking about Gilenya.

I feel like I've been in a pretty good place about it. I'm thankful that I have been diagnosed so early, I know that many people don't get diagnosed until later in life. And I generally have a pretty good outlook on life anyway - I'm just not one to live their life being upset and afraid of something I don't necessarily have the most control over.

But it does bother me when I let it, which I do sometimes.

I swear I worry about such dorky things like...what the heck do you say to the person you're dating? I've found so far that some people either act like I'm dying or act like I've just survived a shark attack or don't care because I look fine. My friends have decided that Multiple Sclerosis is way to scary sounding and that we shall rename it "Random A**hole Immune System Disease" (RAISD.) Catchy. Nailed it.

I'm very lucky in that I have a great family and friend base. My job is pretty kick *** and I work for a bunch of nurses and medical professionals, so I don't have to worry too much about that (although, I do, because obviously.) Also, does anyone find traveling difficult? I have what they call the wanderlust and the thought of not being able to go somewhere if I want to is so sad-making.

This is getting excessively long and all over the place... so I'll end it here... Say hi, I'm friendly!

[abeautifullife]

Hello . Welcome to the boards! We Irish lasses seem to catch this darned disease more than our fair share. I am glad to hear that you are doing so well with your dx. I am around a decade older than you and am doing just fine as well. Best wishes, it sounds like your doctors have things well in hand

[Fed Up]

Hi aislynngrace and welcome to MS World;
Your introduction was very pleasant to read and enjoyable, despite such a diagnosis. Cudos to You!

There are many threads here discussing the questions you are asking, you might want to dig around for some and read. I am sure others will have more sage advice for you.

You seem to have your mind in a really good place and already up to the challenge. That's a big part of the battle! And Your docs seem to be right on point and 'getting things done.'

I expect and certainly hope you will experience all the joys and dreams of your life you've planned. Plan for success and deal with the rest~when you need to.

There are plenty of MSer's stories here that are very encouraging and many have been able to live their dreams. Just get on with it asap and do all you can.

Hopefully, this won't interupt any more parties for you and you will never have any more issues with your M.S...and keep up the great attitude; fed

[22cyclist]

Hello, Everyone!

My name is Aislinn (pronounced Ash-lyn for my non-Irish people.) I was born and raised in Connecticut spending summers and sometimes holidays in Ireland where my father is from and his family is. I'm 24 years old.

On November 23rd (I remember the day, because it was the 50th anniversary of Doctor Who and my friends and I were watching it together.) I had a headache and chose to wear my glasses -- new blue Warby Parker's I wanted to show off to my bestie. While I was driving there I got annoyed because I had rushed to put makeup on and blinked and got mascara on my glasses. At a red light, I stopped and cleaned them and put them back on, but the smudge wasn't better. I spent the rest of the afternoon irritated that my glasses were so smudgable. I had plans to go to see friends in NYC that night, so stopped on my way home to switch to contacts. But, the white fog in the center of my left eye was still there. Obviously, this resulted in inner panic and calling my parents..."WRONG. THIS IS VERY WRONG." The only people I'd ever known who lost their vision suddenly had brain tumors.

I spent the next few days in eye doctors offices, becoming increasingly panicky as I learned there wasn't anything wrong with my eyes. I suppose now is the time to tell you that I have anxiety issues or, as my father would say "The Worried-est Girl in the World."

Long story short, my MRI showed a number of white plaques (this is one thing that SCARED me, I felt like there were A LOT is that bad? I don't know how many maybe 10? Three showed up very bright in the contrast MRI.) A week after Optic Neuritis started to effect my left eye, I started a five day round of SoluMedrol. By Monday my vision had fully returned (it still kind of gets blurry when I get too hot or if I agitate that eye.) That Tuesday, I had a spinal tap which they botched big time (four times missed before sending me up to Interventional Radiology to get it done-- if you get a spinal tap and it hurts they are doing it wrong, so tell them to stop, don't try to be a hero like me.)

On Tuesday I went back to work, and got the devil of all headaches, wound up having my mom come pick me up after I tried to drive home and decided I was endangering people - I felt like I was going to faint or have a seizure! Went to the ER and they said I was one of the people who got a PDPH and did a bloodpatch. Which made me feel much better, but I had had such a bad headache that it actually hurt to touch my skin around my neck-- my muscles had been so tight I had been in so much pain!

All in all it was a really emotionally upsetting and scary situation. I didn't feel good and I was getting in one of those "am I always going to feel like this" fear states. It wasn't good.

LP came back negative for any infections (there's a strain of Lyme's disease here in CT that mimics MS almost exactly) and a cervical spine MRI revealed one lesion (I didn't actually see that one, but they said it was there.) So, I got my definitive diagnosis last week. Currently, I'm having some anxiety, ice pick headaches , and some twitchiness, but I'm unsure how related these are to actual M.S. symptoms. The doctors are testing me from JCV to see if I am eligible for Tysabri and also talking about Gilenya.

I feel like I've been in a pretty good place about it. I'm thankful that I have been diagnosed so early, I know that many people don't get diagnosed until later in life. And I generally have a pretty good outlook on life anyway - I'm just not one to live their life being upset and afraid of something I don't necessarily have the most control over.

But it does bother me when I let it, which I do sometimes.

I swear I worry about such dorky things like...what the heck do you say to the person you're dating? I've found so far that some people either act like I'm dying or act like I've just survived a shark attack or don't care because I look fine. My friends have decided that Multiple Sclerosis is way to scary sounding and that we shall rename it "Random A**hole Immune System Disease" (RAISD.) Catchy. Nailed it.

I'm very lucky in that I have a great family and friend base. My job is pretty kick *** and I work for a bunch of nurses and medical professionals, so I don't have to worry too much about that (although, I do, because obviously.) Also, does anyone find traveling difficult? I have what they call the wanderlust and the thought of not being able to go somewhere if I want to is so sad-making.

This is getting excessively long and all over the place... so I'll end it here... Say hi, I'm friendly!

Hi and welcome to MS World! I am going to try and answer some of your questions.

1. When talking about WM lesions, you asked if 10 was a lot of lesions. It really doesn't matter the number you have, it is more about the location of the lesions. Many lesions in some locations of the brain do not cause symptoms. There are places in the brain that do cause symptoms, like the brainstem, the cerebellum, the temporal lobe, etc. Your spinal cord also causes symptoms. So you can collect quite a few in the brain in certain locations and it is no problem. The number is not always an issue.

The ones that show up bright are active lesions and need to be treated with IV solumedrol most often.

2. About bloodpatches: I have had a couple. Sometimes they put a little too much blood back in and you can get a pressure headache from having too much circulating pressure in your CSF. It is an awful feeling and can give you an awful headache. Eventually the pressure evens out and you feel better. I hated that too.

3. When you are dating, don't disclose until the 3rd date. Then just matter of factually tell them you have MS. Tell them a bit about it, like it is not a death sentence. Same with your friends.

4. I find it difficult to fly. So traveling is a bit hard. I can do it, but the pressure changes in the plane make me very dizzy, more dizzy than I already am. I can ride in the car for long distances, but that makes me dizzy too. I have severe nystagmus, so just about everything makes me dizzy. I just take a sleeping pill and sleep through it.

Don't worry about being all over the place. Most of us are too. I think as time goes on you will become more comfortable with your diagnosis and therefore more comfortable with what to say to people. I wish you the best in your journey. Please keep us posted along the way.

Take care
Lisa
Moderation Team

[aislinngrace]

Thanks for the nice words and advice, everyone!

[Pipes123]

I keep coming back to this group because of the kindness that is routinely shown here.

Re travel, be careful about starting an immune suppressing drug if your travel plans include places where you would need live vaccines.
Best wishes.

[SNOOPY]

Hello aislinngrace and welcome to MSWorld

I'm thankful that I have been diagnosed so early, I know that many people don't get diagnosed until later in life.

For many, many years MS was known and sometimes still referred to as a 'young person's disease' diagnosed between the ages of 20 & 40 years old.

It wasn't until several years ago that age limits no longer mattered and the very young (pediatric) and those over 50 were receiving a diagnosis of MS.

I received my diagnosis at your age --- 24 (28 years ago).

Also, does anyone find traveling difficult? I have what they call the wanderlust and the thought of not being able to go somewhere if I want to is so sad-making.

I have traveled by plane, car, truck and train (scenic day trip). I go for day trips, weekends, a week or more.

Take care!

[aislinngrace]

Re travel, be careful about starting an immune suppressing drug if your travel plans include places where you would need live vaccines.
Best wishes.

Can I bother anyone to link me to threads/info on vaccinations and MS? For example, should I get them or no?

Also, I do fly a lot as half my family and most of my friends lives on a different continent... Don't need live vaccines to enter the EU but would you suggest adding a good bit of Airbourne? I know we don't necessarily want to boost our immune systems, right?

I'm sure a million people have asked these questions and I apologize for being repetitive I'm still making my way through literature and the forums.

[Pipes123]

Some ms drugs work by directly weakening the immune system. I'm on Gilenya, which does this.

Some vaccines, like yellow fever for example, give you a weakened form of the virus. So, if you are immune suppressed, you don't want to take that vaccine. Others give you a dead form of the virus, and that should be ok.

Ask your doctor any time you take a vaccine whether it is ok for you.

I was thinking about tropical diseases, not about flying between Europe and the US.