I haven’t posted about MS in awhile so I figured I would write up something about a new scary symptom that I have going on. Over the last year or so I have started to have a really hard time remembering what I need to do.  One time that I can remember vividly was when I was driving home and I couldn’t remember how to get home or where I was even at.  It did pass but it is always scary not knowing how to get home.  I found stat that says about 50% of people with MS will experience some type of problem with their cognitive function.  They also that only about 10% of people get so bad that it interferes with their day to day activities.  The MS website that the following functions are more likely to be affected:

• Memory (acquiring, retaining, and retrieving new information)
• Attention and concentration (particularly divided attention)
• Information processing (dealing with information gathered by the five senses)
• Executive functions (planning and prioritizing)
• Visuospatial functions (visual perception and constructional abilities)
• Verbal fluency (word-finding)

They said that the following are less likely to be affected:

• General intellect
• Long-term (remote) memory
• Conversational skill
• Reading comprehension

I have started to notice that I don’t many outward showing symptoms but I do have a lot of cognitive and other mental issues.  I have also noticed that I have started to have more issues with anxiety and depression than I have had before.  I think for me the MS is affecting the parts of the brain that control thinking and emotions.   This is the one symptom of MS that bugs me the most.  I feel like the disease already takes so much us why do we have to worry about losing our ability to think and function.

On another site I found it listed several ways to deal with it.

• Keep a note pad near at all times and write stuff down as you think of it.
• Use Post-It notes to keep reminders.
• Have a calender that you write down appointments and/or special days in.
• Repeat information and write down key points
• Keep things in familiar places.  Like putting your keys in the same spot every day so that you don’t forget where they are at.
• Have conversations in quiet places where there aren’t many distractions.
• Keep your mind active by doing crossword puzzles.
• Use your cell phones address book and calender to help remind you of things you have to do.

Those are just a few of things they listed.  I hope this is helpful to everyone.  Like always if you want me to write on a topic just let me know.  I am always looking for ideas.

Sources:
 http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/cognitive-function/index.aspx

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1272

http://wwwmsviewsandrelatednews.blogspot.com/2010/12/ms-cognitive-impairment.html

This is something I posted on my private blog but thought that maybe people out there can relate to what I am saying.  This post really isn’t about MS but it is something that I am struggling with right now because of the MS and people not understanding my current mood.

I wish people could understand how it feels to one day be able to do something and then the next day not be able to do it.  People just don’t seem to understand the amount of frustration and anger that it causes to never know what the next day will bring.  It is so hard right now for me to except that I am sick and getting sicker.  I hate that I am never going to know from day to day what this disease will bring.  I know people think I am crazy, mean and or bitchy but if they want to know what it is like lets randomly make them not able to do things and then change it at random times.  I really wish everyone could experience it that way they would know what it feels like and how frustrating it is not knowing what the next day is going to bring.  It is so hard going to bed not knowing how you will feel when you wake up or what you will be able to do.

People in my life assume that because I am up and walking around that I am okay but what they can’t see is the pain I am in or the fact that my feet are numb.  I wish I had a disease that you could see so that people wouldn’t think I am lying to them about how I feel.  I don’t understand why it is so hard to understand that I am in pain and I hurt on a daily basis.  I also don’t get why people don’t seem to get the I am sick and not lazy.  If I could work two jobs and move out of my Grandparents house I would in a heart beat but it is all I can do to work the job that I have now.  I hate living there and I don’t think people understand that.  I moved out before because I couldn’t stand it there and I am back to that point again.  No one will ever understand just how much I hate being there but because of the huge amount of doctors bills I have and will always have because of the MS I have no option but to live there because I don’t make enough to pay doctor bills and rent.

This week I am going to talk about Copaxone and my experiences with it.  Copaxone is given in shot form that you take every day.  It goes just under the skin.  It is composed a amino acids that may act as a decoy so that your body will attack the drug and not your nervous system.  This drug has been around since about 1996 and seen as a safe drug. Here are a list of possible side effects from the drug:

• pain, redness, swelling, itching, or lump in the place where you injected glatiramer
• weakness
• flushing
• depression
• abnormal dreams
• pain in the back, neck, or any other part of the body
• severe headache
• loss of appetite
• diarrhea
• nausea
• vomiting
• weight gain
• swelling of the hands, feet, ankles, or lower legs
• purple patches on skin
• joint pain
• confusion
• nervousness
• crossed eyes
• difficulty speaking
• shaking hands that you cannot control
• sweating
• ear pain
• painful or changed menstrual periods
• vaginal itching and discharge
• urgent need to urinate or defecate
• tightness in muscles
• white patches in the mouth

I personally have never seen this many possible side effects.   I can tell you when I took it I remember the injection site being red and swollen and that is all the side effects I had.  I hated these shots for a number of reasons but the many one is that I hated to give myself a shot everyday.  I hate giving shots to myself.  I would sit there for hours trying to talk myself into doing it.  It would finally get to the point where someone else would have to do it for me.  This drug didn’t do anything for me at all.  I felt like I did when I wasn’t on anything.  I know for some people they love this drug but for me personally it did nothing.

That is all I really have to say about the drug.  Please don’t base your decisions on which treatment to use sully on my experiences with the drug.  Before I do any treatment I always do research on it and see what people who are on it say about it.  I hope everyone has a great Thanksgiving.  As always I am looking for ideas to write about so if you have something you would like to see please leave me a comment and I will write about it!
Sources
http://en.wikipedia.org/wiki/Glatiramer_acetate
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000225

This week for MS Tuesdays I am going to write about my latest infusion and the new side effects that I had with this one.  I have always gotten a headache and sometimes I would have a reaction that felt like I was burning up from the inside out.  Well this time I had a whole new set of side effects that I wasn’t prepared for.  I had in on a Thursday because I couldn’t take Friday off and now that I look back at it and this turned out to be a good thing.  Anyways, I  woke up Friday and i was a little stiff but that is pretty much how it goes when I don’t take my muscle relaxer before I go to bed.  I didn’t think anything of it because it does happen and usually wears off after a few hours.  By the time I got to work I was in so much pain I wanted to cry.  I ended up calling my doctor and getting pain pills called  in but I decided that I would rather have a headache all weekend then the amount of pain I am in right now.  I have learned to handle headaches but I can’t deal with this pain especially since it is super hard to get pain pills out of my doctor.  She treats me like I am a drug addict and it is getting on my last nerve but that is another post for another day.  So I have the pain and when I was looking at the other side effects a lot of things made a whole bunch of sense to me.  Here are the side effects that go along with the drug:

When I looked at this list I realized that the UTI I had was because of the drug and the fact that my glands always swell up and hurt me was because of it.  I am amazed that this drug that is helping my MS is always making me sick.  It makes no sense to me.  I know I don’t want to stop taking the drug but I also know that I can’t keep dealing with all of the side effects.  All the ones in pink are the ones that I have had while I have been taking this drug.  After looking at the list and things that I have it is time to go back to the doctor and maybe go on a different medication. 

The big thing I want to say today is don’t let doctors bully you into staying on something that makes you sicker than the MS makes you.  You need to take your health into your own hands and do what makes you feel better!