Living with MS Means Living with Daily Symptoms and Pains

Living with Multiple Sclerosis Means Living with Daily Symptoms and Pains. It is not something we like to know and it is hard to accept at times. I have been dealing with symptoms and pains for a few years now. Some come and go as they please and some are with me everyday. The past few months have been really rough with balance and dizziness symptoms, fatigue, and the pains in my legs have become worse. I find it interesting and frustrating at the same time to know that when I called the Doctor regarding the pains in my legs. I was told that I should go to see a psychologist to get help accepting my MS.

Now some of you have gotten to know me very well over the last few years and some of you are new to learning about me. It blows my mind that someone (my Doctor) of all people would think that I haven't accepted my disease. I consider myself very accepting of the disease and the daily pains and symptoms that go with it. However, sometimes the pains are very bad and continue to stay bad or get worse and I thought maybe, by calling the Doctor, they would have some ideas to help with the symptoms. My Doctor said " you have MS you will always have symptoms and pains and it will progressivly get worse, that is MS".

I get frustrated because I take a lot of pride in accepting this disease and try to help others accept it. This same Doctor (not my Neuro, it is my G.P.) knows me well enough to know that I don't call her nor do I go visit her unless she demands it (1 time a year). So if I am at my end and am asking for help, you would think she would keep that into consideration. I want to ignore her request to go see a psychologist because acceptance is not an issue I have.

For the last few weeks my legs have hurt so bad. I sent a message asking if there was anything I could be doing because, by the time I wrote her I was in so much pain. Oh yeah, I may have mentioned that I was ready to amputate both of them to help reduce the pain. Now I know that amputation is not the answer because I would not be able to wear the cute jeans I just bought at the store but I wanted her to know how bad it was getting.

Its crazy to me how many Doctors you end up having when you are diagnosed. Then they push you to Specialized Doctors when a part of the body is getting messed up. You go to see the different Doctors, have the test run and then none of them talk to each other. So I feel like I get pushed off on to different doctors but the results dont get relayed. So you are basically having to start from scratch and explain what each Doctor tested for and what they feel should be done. Only to have the initial Doctor disagree and say NO. Isn't that why they send you to Specialists???

So I am going to sum up really quick where I stand.. When I am forced to go see the Doctor and I finally come to see them. When they ask me, "How is everything going"? I am going to say "Fine". This way I dont get shoved off on to other Doctors and waste my time. I won't be told, "deal with it...you have MS". I won't be put onto medications that may or may not be helping. If they are helping, are they only helping contradict the side effects from the other medications? I will start looking into natural products to help with the symptoms and just try to do the best I can each day.

Oh, and I have been asked by many of you how the MRI went. I only had the MRI of the brain done. There have been no changes so I am very happy with that. It does leave me questioning how it is possible to have no changes on the Brain MRI but my symptoms seem to be worsening??? HHhhmmm It is a mystery to me.

An Exacerbation that Lasts Forever.

It has dawned on me that it has been over 2 months since I have posted on here. I am laying in bed wondering where the last two months have gone. Granted, there were the Holidays but oddly I feel like it was yesterday when I posted on here. It is times like this that I realize that I have let the MS control me. It gets me so frustrated when life just passes by and you feel as though you are in the moment but when you look back you realize you were in bed and doing everything to fight this disease. I call it "Fight to Survive" mode.

I swore a year ago that I was going to try to fight and ride out my MS attacks. I was not going to rely on the Solumedrol to help me. Let me clarify quickly. Solumedrol is great and a huge help in trying to suppress an MS exacerbation. For me, I have horrible side effects and those side effects seem worse to me then fighting the MS exacerbation. When an exacerbation effects my vision, then and only then is when I have an inside battle on what to do. So, in November, my vision was very blurry and I was falling and very unbalanced but it was always happening on the right side. Every time I would fall it was to the right. When my vision went blurry and I was falling, I made the decision to finally take the steroids. My Neuro knows how hard they are on me so we decided that instead of doing 1000mg I.V. daily for 5 days we did 500mg a day hoping it would help put the MS exacerbation in remission and also maybe not have the side effects.

Well, the attack seemed to have been stopped so that was good however, the side effects were just as bad. And then starting in December, I started having horrible headaches and by the end of December I was very dizzy and constantly motion sick. I have had vertigo before in the past. The room would spin horizontally and I also have had it where the room would spin vertically. This time, there was no spinning. If I would move my head even the slightest... I would get so horribly motion sick. I finally went in to the Neuro this last week. Of course he responded with the fact that he would normally insist on Steroids again but since it has only been about 2 months he recommended oral steroids. He also wants an MRI done to see what is going on. He is trying to determine if this is one long exacerbation since last November or if another exacerbation is happening again. He said that either way, both have been affecting my equilibrium. By doing the MRI it will show if the MS is getting worse or not.

I have to say that I hate going in for the MRI's because you are going to have a 50/50 chance that it is the same or progressing. Who wants to hear that the MS is progressing? I know I don't!! Mabey that is denial or mabey it is just not wanting to hear the answer that we are all expecting to hear. Either way, I am very nervous.

I know I have said in the past that I think when someone is diagnosed with a disease, you go through a "grieving" process. That process eventually goes away but everytime you start to show problems again, the "grieving" process pops back again. And this is where I am at the moment.

I want this exacerbation to end and get on with my life. Get back to enjoying everyday and not losing months of my life at a time.


Just A Reminder: Having MS means having many medications in your home. I have 3 kids. 2 teenagers and one is 10. As I was looking around in my drawers, I have gained many medications over the last 2 months let alone over the last few years. Now, I trust my kids but they all have friends that know I have MS and so I thought it was a perfect time to remind everyone to find a place to lock up all your medications. By keeping them safe you are also helping to keep many kids safe.