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Some Interessting Facts

17 May
Written By

This week for my MS post I am going to post some facts that I found about the disease.

Facts about Multiple Sclerosis

General Information about Multiple Sclerosis

  •  First Diagnosed in 1849
  • The earliest known description of a person with possible Multiple Sclerosis dates from 14th century Holland
  • Multiple Sclerosis is the most common progressive and disabling neurological condition in young adults
  • Approx 2.5 million people worldwide, have Multiple Sclerosis
  • Around 400,000 people in the United States have Multiple Sclerosis
  • In the UK, approx 70,000 people have the disease
  • Approx 50,000 people in Canada have Multiple Sclerosis
  • Scotland has the highest incidence of Multiple Sclerosis per head of population in the world
  • In Scotland, over 10,500 people have Multiple Sclerosis
  • No virus has ever been isolated as the cause of Multiple Sclerosis
  • Average age of clinical onset is 30 – 33 years of age
  • The average age of diagnosis is 37 years of age
  • The average time between clinical onset of MS and diagnosis by physicians is 4 - 5 years
  • 10% of cases are diagnosed after the age of fifty
  • In 1936, only 8% of patients were reported to survive beyond 20 years after onset of illness
  • In 1961, over 80% of Multiple Sclerosis patients were reported surviving to 20 years after onset of illness
  • 2002 – A patient with Multiple Sclerosis can expect to live to average population life-expectancy minus seven years (mean life expectancy - 7 years)
  • Multiple Sclerosis is five times more prevalent in temperate climates than in tropical climates
  • Multiple Sclerosis affects women much more frequently than men. Approx. 1.7 – 2:1 in the US and approx 3:2 in the UK
  • The ratio of white to non-white is approx 2:1
  • Gypsies and Inuit’s do get Multiple Sclerosis although the incidence rate is much lower than other populations at approx 19 per 100,000
  • Native Indians of North and South America, the Japanese and other Asian peoples have a very low incidence rate of Multiple Sclerosis
  • In identical twins where one twin develops the disease, the likelihood of the second twin developing Multiple Sclerosis is approx 30%
  • The incidence rate for non-identical twins, where one contracts Multiple Sclerosis, is approx 4%
  • The risk of contracting Multiple Sclerosis if a first-degree relative (father, mother, sibling) has the disease, is approx 1% - 3% overall
  • The risk of contracting Multiple Sclerosis if your father has the disease is approx 1 in 100
  • The risk of contracting Multiple Sclerosis if your mother has the disease is approx 1 in 50
  • The risk among the general population of contracting Multiple Sclerosis is approx 1 in 800

Sources:
http://www.themcfox.com/multiple-sclerosis/ms-facts/multiple-sclerosis-facts.htm

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Filed Under: MS Tuesdays

Eating Health

3 May
Written By

This week I am going to write about eating healthy.  I realize now how important watching what you eat is.  Since I have be diagnosed I found out that I shouldn’t eat gluten.  I don’t think I have Celiac’s Disease but I know if I eat gluten I am going to get a headache and a few other symptoms.  I have noticed since I have cut out most of gluten in my life that the MS isn’t as bad.  Now this could be because of the medication I am on but I truly think that by cutting out the gluten my body isn’t as reactive as it was when it always had it in my system. 

The MS Society recommends a low fat high fiber diet.  They say that you should eat a diet low in saturated fats and use supplements of Omega 3 and Omega 6 oils.  I personally can’t start taking any of the fish oils so I used to take Flax pills instead.  I also read on another site where it says you should cut out all fried foods and refined sugar.  They also say that white meats and fish are the best kinds of meat to eat.  I personally am considering going back to being a vegetarian.  You need to also cut out any foods that you are allergic too. You should eat lots of vegetables and drink plenty of water. 

As I was researching for this post I realized that this “diet” isn’t any different than what every person should be doing regardless if they have MS or not.  I am going to try and follow what I have learned but I know it will be super hard for me.  I feel like I already cut so much out when I took out gluten and dairy that I am not let with many choices.  I know that I have to do this though so I am going to start working on it!

If you have any questions or have a topic that you would like to learn about please leave me a comment and let me know!  I am always looking for topics.

Sources:
http://www.nationalmssociety.org/living-with-multiple-sclerosis/healthy-living/nutirtion-and-diet/index.aspx
http://www.streetdirectory.com/travel_guide/152132/e_diet/tips_for_a_multiple_sclerosis_diet.html

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MS & Lyme

1 Mar
Written By

This week I am going to talk about how some people are misdiagnosed with MS when they actually have Lyme Disease.  I got the idea for this from a comment that was left on the MS a few weeks ago.  After I read the comment that she left I knew I had to find out more about this.  There is so many reports out about this subject but I have found they are hard to digest and get through.  I am going to post a summary of what I have found on the subject. (Please know that there are reports out there but they hard to understand and I am going to do my best to high light all the interesting things I am reading.  If I get some thing wrong please let me know so I can correct it!)

  • I read where it says that they patients are getting the diagnoses of “probably MS” and not an official diagnoses of MS.  While they are undergoing treatment for MS they aren’t seeing any improvement in their symptoms in fact they may be getting worse.
  • MS and Lyme Disease both attack the central nervous system and leave the same type of lesions on the nerves.
  • One site I read said that people that are treated with steroids may seem like they are getting better but they are actually just having the symptoms of the Lyme Disease masked by the steroids

That is all that I could find about it.  Most of what I could find was articles were patients stories.  I debated about posting the woman’s comment that left on my blog but I decided that I am going to.  If you are reading this and would like me to take it down I will just let me know!
I think that it is worth your while researching Lyme Disease thoroughly.
You will find the blood tests miss 50% of cases.
The MRI scan is the same for Lyme Disease as for MS.
There is research that shows that many patients with MS have a spirochetal infection- which Lyme Disease is.
Treatment for Lyme Disease is antibiotics long term.
Treatment for MS -Steroids is contra indicated for Lyme Disease because it allows the bacterial infection to progress whilst appearing to supress the symptoms.
Tom Grier a microbiologist wrote 4 excellent lectures found in the right hand column of my blog he was also diagnosed with MS and then found it was Lyme Disease and recovered on appropriate antibiotics.

Lyme Disease is an emerging illness and there is much controversy over it so don’t expect much guidance from your neurologist do your own research and good luck.

They do not yet know what causes MS they only assume it is auto immune whilst the controversy rages over Lyme Disease how many MS patients are being missed when just simple antibiotics can restore health.

I know that she says a lot of what I wrote over but she does have other information in there that I think is great as well.  This was one of the hardest MS posts I have written because it was hard to find documentation on this subject because Lyme Disease is a newer condition.  I hope it was somewhat helpful though!

Sources:
http://www.associatedcontent.com/article/15949/multiple_sclerosis_patients_should.html?cat=5
http://www.google.com/search?q=lyme+disease+and+MS&ie=utf-8&oe=utf-8&aq=t&client=firefox-a&rlz=1R1GGGL_en___US367

Filed Under: Lyme Disease, MS Tuesdays

Jodi’s MS Story

8 Feb
Written By

Today’s post is written by a lady that found my blog this past week.  I asked her and see agreed that I could post her diagnoses story.  Her name is Jodi and she blogs at Jodi Bean’s Blog.  Please go and give her some comment love.
I am always looking for people who are willing to share their stories on my blog when it comes to MS.  If anyone reading would like to share their story with my readers feel free to email it to me at margaannemarie (at) yahoo (dot) com. 

On September 26, 2008 I was diagnosed with Multiple Sclerosis.  At times it feels like it was yesterday and at other times I find it hard to remember my life without MS.  MS has become such a huge part of my life, not just because of my health but because of my involvement with volunteering and fundraising for MS.  Often times I wonder why I got MS. . . the whole “why me” question.  I don’t really know for sure why me but I do believe there is a reason or a purpose so I just try to do all I can to make a difference while I am healthy enough to do so.


Margaret has asked me to share “my diagnosis story” with all of you so here goes!  On Thursday, September 25, 2008 I woke up to my alarm clock just like any other day.  But this day I noticed that my left food and leg were asleep.  I figured I had just slept on it weird so I dragged myself out of bed and got in the shower.  When the water hit me I realized that my left arm and side had that same feeling of “being asleep” or pins and needles.  I thought it was weird but didn’t pay much attention.  So I continued to get ready for work like any other day.  When I brushed my hair and my brush went down the back of my head and neck I had “that feeling” there too.  I thought, “Hmmmm what the heck is this all about.”  Off to work I went.  When I got to the office (at the adoption agency where I use to work) I told my two co-workers, Joana and Mary about my weird pins and needles on my left side.  I told them I had closed my ankle in the door the night before and thought maybe it was from that.  Or maybe it was a migraine?  Or a pinched nerve?  I decided to google my symptoms to see if I could figure it out and even read about some auto immune diseases including MS.  At this point I really wasn’t overly concerned but they were.  Joana really encouraged me to call my doctor so I did.  Or course the secretary told me he had no openings so I told her what was going on and ask her if he could call me.  A few minutes later the nurse called me back and asked me to come in later that day.  So home from work I went.  By the way I also had a cold and was exhausted.  I had mentioned to a few friends and my family that I wasn’t feeling well including my pins and needles.

I went to see my doctor that afternoon and told him what was going on.  He check me out both for my cold and for the pins and needles.  He did a full neurological exam but stated he wasn’t overly concerned because other than the pins and needles my exam was “normal.”  He decided to consult with a neurologist anyways who wanted me to come over and see him first thing the next day (it was already late afternoon at this point).  So that was that.  I went home and laid on my couch watching tv and being lazy.  I wasn’t feeling great due to the cold and by this time my whole left side was numb including my face.  I had also told a friend of a friend I would house and cat sit for several days and it started this night.  So I went over to their house to hang with the cat and sleep over.  The next morning, Friday, September 26, 2008 I went to St. Elizabeth’s Medical Center to see the neurologist.  We immediately hit it off because he asked me what I did for work and I told him I was an adoption social worker.  It turns out that he is an adoptive father so he starts telling me a little about that.  Then I tell him what has been going on and he does a full neurological exam.  He too states that he is not overly concerned because my exam was “normal” except for the numbness.  He talked to me about some things it could be from like stress, a virus or anxiety (I somewhat took offense to the anxiety comment since to me that meant “maybe this is all in your head” and I knew it wasn’t even though I didn’t think it was something serious).  Then he recommended that I have an MRI and blood work.  I remember him saying that it was probably nothing and it would likely go away and I would never know for sure what it was from.  I thought, “ok that makes sense - probably nothing.”  I went back to sit in the waiting room while he talked to his secretary to coordinate the MRI.  I called my mom (who was at work) to let her know what was going on and of course she was worried.  She and my dad wanted to come over.  I told her not to  because I was really tired and just wanted to go home and go to bed after the MRI.  She said ok (but she lied haha).  So the neurologist comes back and tells me to head down right then for the MRI because they had an opening.  He tells me that he is on call for the weekend and I can call him if I want to get “the results” but that it is “probably nothing.”


So I head down for the MRI and get registered.  Then I wait.  At this point I’m still not really nervous.  Both my doctor and neurologist have reassured me that it is probably nothing.  So I’m just wanting to get it over with so that I can go home and sleep.  I head in for the MRI and once in the tube I’m thinking, “well this isn’t an opportunity for a nap.”  The banging was rather annoying!  This was my first time having an MRI so I really didn’t know what to expect.  After a 1/2 hour they pulled me out to inject contrast and back in the tube I go for about another 20 minutes.  I finish up the MRI and go to the bathroom to get dressed.  When I come out the tech tells me that the neurologist was ready to see me in his office.  I told her that he told me I could just go home afterwards and she again tells me I need to go see him.  So I was thinking that he was just going to give me the results in person since it was before 5 PM and he was still there.  No big deal right?  At that same time my parents arrived at the hospital (of course they had hopped in the car as soon as I told my mom I was having the MRI).  So I told my mom that I had to go back up to see the doctor.  I found out later that she was freaking out but I was still ok.  I just remember saying to her “Why would I need to go back and see him.”  Denial is a wonderful thing I guess because I was still pretty calm.

So I walk off the elevator toward the secretary and she says, “Hi Jodi I’m just getting your admission paperwork ready.”  I say, “WHAT?”  She says, “Oh the doctor will be with you shortly have a seat in the waiting room.”  We go and sit in the waiting room and I say out loud, “Why would I need to be admitted to the hospital?  I’m fine.”  All while sitting in the waiting room of the MS Center surrounded by pamphlets.  I even get a phone call from my Aunt Cathy who was calling to check on me.  I told her what was going on and that the neurologist thought it was nothing but wanted me to have an MRI to rule out MS and blood work to rule out Lyme’s disease and other stuff.

A little while later, the secretary tells us that the neurologist in in the emergency room dealing with an emergency and that we should take a walk to the cafeteria.  So we do and I get a tea and we kill some time.  We head back and soon after the neurologist arrives and apologizes for keeping us waiting.  I sit down in his office and he says, “Well by now you know there was something on your MRI.”  And I’m thinking no not really, “What?”  He says, “You have MS.”  I remember being SHOCKED.  But I’m fine.  I’m healthy.  There is nothing wrong with me.  He continues to say, “I am going to admit you to the hospital for 5 days of infusions of steroids.  That will help the inflammation go down and hopefully get rid of your symptoms.”  I ask, “Can I go home first?  Can I work next week?”  Seriously I’m thinking about work when I’ve just been told I have MS.  What is wrong with me?  Haha!  So we ask questions, he tells us a lot of stuff, I cry a little and then we head downstairs to wait to be admitted.  Still in shock I call my roommate, Stephanie.  She asks how I’m doing and I remember telling her not good.  I told her that I had MS and I don’t think she really knew what to say.  Then I had to ask her if she could cat sit for me that night since I wasn’t going anywhere.  She was great and agreed to do that as well as pack a bag for my parents to pick up to bring over to the hospital.

So we wait and wait some more and finally I get up to my room.  I think it is like 6 PM by now.  My original appointment had been at 11 AM so it had already been a LONG day.  My parents leave together so that my dad could drive my car back to my house and so they could get some stuff for me.  The neurologist (who I guess at this point is now my neurologist since I’d be needing one) comes to see me.  It was so nice of him to come and visit with me on a Friday night to make sure all of my questions had been answered.  He talked more about adoption and he shared his daughter’s adoption story with me.  It was really nice because in that moment it made me feel more normal since adoption was what I did I could focus on that part of me instead of the new sick part of me.

My parents returned and my brother, Timmy also came to visit that night.  My mom had called my 3 brothers, grandparents, aunts and uncle.  Luckily are family is pretty small so she didn’t have too many people to call.  I couldn’t even begin to think about all the phone calls I needed to make.  Joana called me soon after as she was anxiously awaiting an update from me.  I had to tell her my news and she too was shocked.  I can’t really remember who else I told that night.  Strange since I remember the rest of the day in so much detail.  But the details of all those phone calls are a little blurry.  I do know I had to start my first treatment that night so they got me set up with an IV and started the steroids.  I was so exhausted by the time that was done and everyone left that I pretty much just went to bed.


I’m not going to get into all of the details of the next 5 long, boring days spent in the hospital because this post is already super long!  But to summarize I had a lot of visitors and felt so fortunate to have such a supportive family and friends.  I also got flowers, cards, candy, etc.  I guess all I had to do was get sick to be showered with attention and gifts.  Haha.  Finally on Tuesday afternoon I was allowed to go home.  Here I am right before leaving the hospital .  You would think I would look much happier to be going home (well to my parent’s home) but I always feel a little silly posing for pictures alone.


I stayed at my parents house through the weekend.  I was pretty exhausted from the ordeal so I didn’t do much of anything.  I pretty much rested and regrouped.  My grandparents sent me the above flowers once I was out of the hospital which was so nice!  My mom took me shopping too which was really nice but I was so tired I could hardly enjoy it.  I did get a few new things though.

The other great thing about being at my parent’s house (besides that fact that they took care of me) was that my niece, Peyton lives 5 minutes from them.  At the time of my diagnosis Peyton was exactly 9 months old.  So seeing her “walking” and getting kisses from her was the best medicine.  At this age she was pretty obsessed with shoes and really enjoyed the ones I was wearing.  I love looking back at these pictures and remember her at that age.  She was such a cutie!

So this is my diagnosis story.  There are chunks of details I left out because I was getting tired of typing.  But from many, many other MS’ers I’ve talked to I think my story is much different.  I was diagnosed VERY quickly.  I know many others aren’t that fortunate and for this I’m appreciative to my neurologist for sending me for that MRI.  I know he was pretty surprised along with my doctor!  I guess I’m full of surprises.

Once again I just want to thank my family and friends for their continued support during the last 2+ years.  Some days are easier than others but I’m so thankful to know I have so many people to lean on.  Without all of you this journey would not be easy.  Thank you so much for standing by me!

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Cognitive Function

1 Feb
Written By

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

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Filed Under: MS Tuesdays

MS Tuesdays

7 Dec
Written By

I found this really interesting topic on MS on one of the other blogs I read.  I am not going to quote his blog but I went and found a article on it.  They have found a way to use stem cells to make the myelin sheath around the nerves that is damaged by when the immune system attacks the nerves in MS patients.  The research was done at Universities of Cambridge and Edinburgh.  They found the mechanism to make the stem cells start regenerating myelin around the nerves.  The myelin insulates the nerves like the the plastic that surrounds a copper wire.  When the myelin gets damaged the nerve doesn’t work as well or even work at all.  They are also hoping that the research done with help people develop drugs that will promote myelin repair in MS patients
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So if there is away to fix what damage has been done then they can reverse the damage and even cure the disease.  Now this has only been done in rats but if they can do it there then they are getting closer to trying it  in humans.  I have always figured that stem cells were going to be the way to helping people with MS and I am so glad to see that it can possible work.

I am out of ideas on what to post about so if you want to know something please leave a comment.  I am not going to do this every week anymore because I don’t know what to post about.  So please leave me comments on what you want to know and I will write it up for next Tuesday.

Sources:
http://www.aolhealth.com/2010/12/06/new-hope-for-repairing-multiple-sclerosis-damage/
http://www.medicalnewstoday.com/sections/multiple_sclerosis/
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Filed Under: MS, MS Tuesdays, Stem Cells

MS Tuesdays

30 Nov
Written By

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.

Filed Under: MS Tuesdays

Copaxone

23 Nov
Written By

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

Filed Under: MS Tuesdays

MS Tuesdays-Tysabri & Me

16 Nov
Written By

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:

  • headache
  • urinary tract infection
  • lung infection
  • pain in your arms and legs
  • vaginitis
  • nose and throat infections
  • feeling tired
  • joint pain
  • depression
  • diarrhea
  • rash
  • stomach area pain

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!

Filed Under: MS Tuesdays

Interferon

2 Nov
Written By

I am going to talk about the interferon treatments this week but first I have to tell everyone something.  I started this feature because Jacqui said that I should.  She told me that up until she had met me she didn’t know anything about MS.  Well this past week a gentleman left a comment on my blog that made me see that people may not comment on this feature but people are reading it.  He is newly diagnosed and found my blog while researching the medication they put him on.  I was shocked and happy that people are reading my blog and it really is helping people.  To be honest I have been considering not writing about MS anymore because I didn’t think I was helping people but since I heard from him I will keep doing it.  I may not do it every week anymore because I am running out of things to talk about but I will keep doing it from time to time that is for sure.

Now on to this weeks topic.  There are 4 interferon treatments that I am aware of they are Avonex, Betaseron, Extavia, and Rebif.  I have take both Avonex and Betaseron.  I had bad reactions to both of them but because of doctors who were unwilling to listen to me I was on and off them for years.  The major side effects are flu like symptoms.

Avonex is a once a week intramuscular shot.  This medication has to go into the muscle.  I always had to have my aunt who is a nurse give it to me when I was taking it.  I hated these shots and so my grandma would bribe me with things that I wanted so I would take them.  I hated them because they hurt and they made me so sick.  They made me feel like I was burning up on the inside and my skin hurt to be touched.  I can remember waking up in the middle of the night and just crying because I hurt so bad.  All the doctors would say that my body would get used to it but I never did if anything the reactions got worse the longer I was taking the medication.

Betaseron and Extavia is a shot that you take every other day.  It is one that is just below the skin so it isn’t as bad as the Avonex but I found that while I was on Betaseron that they hurt worse and I bruised more with them.  This type has a self inject thing so I “could” give it myself but I would sit there for hours debating with myself to push the button and I never could so in the end someone would have to push the button for me.  I always struggled with giving myself a shot.  I had the same reactions as I did with Avonex except this was more often so I ended up feeling like crap all the time.

I never took Rebif but it is given three days a week.  It is the same type of shot that Betaseron is.  I would assume it has the same side effects as the other ones do.  The reason I never took this one is after Betaseron I decided until something new came out that wasn’t an interferon I wasn’t going to treat my MS.  I would never recommend this to anyone.  It was right for me but it isn’t right for everyone.  I finally found a doctor that was and is willing to work with me and listen to me. 

Next week I will take about Copaxone which is one that I have taken as well!  I hope this will help people.  If you have any questions feel free to leave a comment and I will get back to you or write a post about it in the coming weeks!

Filed Under: MS, MS Tuesdays
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