MRI – The World As I See It

Updates: Doctors Appointment, Multiple Sclerosis, and Everything Else

June 11, 2015

I had a doctors appointment on Monday June 8th and I wanted to write a short update about that appointment and also an update about how I have been feeling lately. I also decided as I was writing this post that I wanted to include just a general life update because I am truly struggling with things right now. I can’t tell everything that is bothering me but I will tell what I can and maybe I will still write what is going on and password protect those posts and if you want to check them out you can email me and I will give you the password for them. Anyway lets get on to the MS update because that is the easiest and quickest part of this post.

As I said before I had a doctor’s appointment Monday afternoon with my neurologist. I hadn’t had an MRI or anything since I saw her last but she does like to see me every so often because of the medication I am on and things like that. I haven’t been feeling the greatest lately but there is nothing that can really be done about that because I just don’t feel well. My headaches are getting bad again which totally sucks because I went so long without having them or at least not having super bads one. I know that the reason I am having them is because of allergies and also just the stress of life. I have an MRI in August and I don’t have to see the doctor again until December so that will be nice.

Now on to the life crap that I am willing or able to talk about. I have no idea where to start or what I even want to say. I guess the first place to start is with the fact that the daughter I placed for adoption will be 10 this year and I am honestly not sure where the time went. It has also been a hard year this year when it comes to dealing with the adoption and I am not sure why this year has been so hard for me.

Another thing that has been hard for me this year is family things and usually I don’t really care what goes on with family members but this year that has changed for me. What is funny about it all is that what I am sad about didn’t even happen this year and to be honest I am not sure why it is now bothers me like it is. I am sure it is because of everything else going on that is making all the little things in life that usually don’t affect me hard for me to deal with right now.

Anyway that is all I can think of right now so I am going to leave it like this.

How are things going for you???

MS Tuesday-Update On Me

February 24, 2015

I recently had an MRI and I also have something going on with my eyes that I wanted to document so that if I needed too I would be able to remember when it first started. First I am going to talk about what is going on with my sight and then I will talk about what the MRI showed along with my thoughts on it all.

So I started noticing that I am getting major headaches for the past 6 months or so when I do a ton of reading. At first I just thought that it was because I needed to start wearing my glasses again so I figured I would go to the eye doctor and get an updated prescription and that I would be back to normal after that. When I went and saw my eye doctor he basically told me he wasn’t sure what was going on because he couldn’t get my vision to correct which is a huge change from what it used to be like. I was referred to see an opthamologist and I still haven’t made an appointment because I am waiting to talk with my neurologist about it first.

If I am being honest I was hoping that the MRI would show that the disease was active or that it had been active because I was hoping that whatever is going on with my eyes could go back to normal. The MRI showed that the disease is stable and that it hasn’t been active in over 6 years which I know is a great thing but I am not happy about it. Since the MS hasn’t been active I now have to go see another doctor about my eyes because the headaches I have been getting need to go.

When I was diagnosed with MS I never thought that I could go blind. I have come accept that I might end up not being able to walk but I am struggling with the fact that I could go blind. For me going blind would be the worst possible thing that could happen to me because I can’t imagine not being able to read books anymore. I know there are audio books and things like that but I love reading actual books and not being able to do that anymore makes me truly depressed.

Anyway that is the update for now. I will have a follow up post about my eyes after I see my neurologist and make the appointment with the opthamologist.

How are things going with you guys?

MS Tuesday-Latest MRI & Update

September 16, 2014

I had an MRI the last Saturday in August and I just had my 6 month appointment with my doctor so I wanted to write a quick update. I am sure most people aren’t really interested in these updates but I want to be able to look back later and see what has changed and this is the easiest way to record how things are now.

Anyway let’s get on to how things are for me now. For the most part things are okay. I mean I don’t feel good hardly ever but I am starting to think that this is my new normal and because of that I am not going to really complain about it. I know things could be so much worse for me so I am trying to stay positive about everything.

My latest MRI showed that I am still stable and there are no signs that I am developing PML so I can still stay on the Tysabri. Which for me is a great thing because it is the only thing that has ever kept me stable so for me it does work and I don’t know what I would do if I had to stop taking it. I know that there are pills out now but they are still so knew that I don’t want to start on them until they have been out longer.

This is also the first appointment in years where we didn’t change any medications and we just are going to keep doing what we are doing and see what happens in the next few months. The only real change is the fact that my doctor wants to start seeing me every three months now instead of every 6 months which isn’t a huge problem just more time-consuming is all.

So all is all I am still stable and nothing much is really going on so I can’t really complain about things now. I have the MS Hug happen a few times in the past couple of weeks but it is hard to say that is what it is when it could also be my back injury so who knows about that.

If you have any questions or requests for something you would like to see please leave them in comments!

Frustrated With Multiple Sclerosis

October 9, 2013

I guess it is time that I write about what is going with me and the Multiple Sclerosis because I haven’t really done an update in a while. If you were to look at my you wouldn’t be able to tell that anything is wrong with me because everything that is going on is on the inside or at least if I don’t tell you anything is wrong then you won’t know anything is wrong.

For the last 2 or 3 months I have been exhausted to say the least. I wrote a post earlier this week about how I am not sleeping but this exhaustion is so much more than just not sleeping. It is so hard for me to explain the difference between being tired because of lack of sleep or being exhausted because of the MS. I don’t think there really is away for me to explain it other than saying I am so tired that if I could stop breathing I would because that takes more energy than I have.

I know that my lack of sleeping isn’t helping the situation any either so that gets to me as well. I just feel like I am falling apart and we have no reason as to why I am feeling this way. I had an MRI done at the end of August and when I went to get the results my scanned showed that the disease hadn’t been active in the last six months. Which should be a great thing but I felt confused and pissed off by it. I really wish the scan would have shown something so that there was some sort of reason for why I am feeling the way that I am.

After my last appointment I started on a new medication and I have taken it for a month and haven’t seen any change in how I am feeling so I don’t know if it is working or not. She did say that I could take it twice a day and I haven’t done that yet because I already take so many pills that I hate taking more but I think I am going to try to take it twice a day for a couple of weeks and see what happens.

It is so hard having something like MS because it sucks when you can’t figure out what is wrong in order to try to fix it. I have to wonder if I am going to have an MS relapse soon because this is usually how you feel before you have one or it is at least how I have always felt before one. As of now I am “stable” but I don’t think I truly am. There has to be something going on and it just isn’t showing up on the MRI. My next MRI is in February and I see my doctor again at the beginning of March so we will see what happens in the next few months.

Multiple Sclerosis Update

March 12, 2013

It is time for another Multiple Sclerosis update. I had an MRI in February to check and see if the MS was still stable and if anything had changed in the past 6 months. For people who have been following my MS journey for me to have been basically in remission for the past 5 years is huge. The disease has always been super active so Tysabri is definitely the medication I need to be on now.

We also discussed a couple of the new treatments that there are for MS and she gave me her thoughts on them and we also decided that since Tysabri is working for me that we won’t even consider changing treatments unless for some reason Tysabri stops working for me. I personally don’t like what I have read and a few of the things she has told me about the medications that are now in pill form so I am not willing to give them a shot right now.

This is a short update but that is because nothing is going on and I hope to keep it that way. I am going to write a post about what an infusion day is like for me so be on the look out for that in the next couple of weeks.

Things That Drive Me Insane-Insurance Companies

February 19, 2013

I am sure everyone knows that I have Multiple Sclerosis and because of the medication I use to treat it I have to get MRI’s every 6 months. I had my latest MRI on Saturday the 16th of February. I received a call on the Friday before my MRI from my health insurance company and all I could think was great now what is their deal.

For a little back story I have always had problems with insurance companies. It always seems like since they have to pay out for me they tend to give me the run around and what not. One time a few years ago I actually had an insurance company make everyone that they paid money to send the money back to them and then I had to fight with them in order to get them to pay for the claims that they requested the money back for. Lets just say that fixing the mess took over a year and I am still sure I paid to much on a few of the claims because I just got tired of fighting with them about it all.

Anyway back to the story when I answered the phone they basically wanted me to change the place of my MRI because the place I was getting it done at wasn’t one of their preferred providers. I was dumbfounded because I was having the MRI the next day and I know enough to know that there is no way that there would be an opening on a Saturday to get a MRI if most places even do MRI’s on Saturdays.

I understand why they called about it but they didn’t have to give me hard time when I told them that I was okay with paying more because my doctor works out of the hospital and it is easier for me to keep track of my records and what not if everything is done in the same spot. I get that they want to save me money but if I am okay with paying more than they really should just say okay and get off the phone.

I am glad they were trying to save me money and everything but in the end if I am okay spending more money then just leave it alone. I may spend more money for the MRI but it means that I don’t have to worry about my doctor getting the results or anything like that because she will be able to just pull them up in the computer. I have had the scans done at other places before and it always turns into a big hassle when it comes to getting the results and things like that. So that is the latest thing that drove me insane.

What is driving you insane this week?