Headache. . .

headache

Yesterday I wanted to write about something that gave me a headache for the Writers Workshop but I already had a book review that had to be posted that day so I figured I would post this today.  I wanted to write about this because I have had a headache for a month now in fact we are coming up on 2 months with the same headache.  I can’t blame this headache on just one thing so I am going to make a list of things that I think are causing it.

  1. The weather has been super crazy lately and it is always changing.
  2. The fact that since it has been warmer some days my cats have started to shed and I am allergic to them. (This one is my own fault and I know it but they are my kids so I won’t get rid of them)
  3. We are putting in new flooring in the living room, dining room & hallway.  My girls usually sleep on the couch and chair in the living room but since it has been torn up they have been sleeping on my bed almost all night so that is putting tons more cat hair and what not in my room.
  4. My Multiple Sclerosis medication can cause sinus infections and I am prone to have them as well.  I am pretty sure I have a sinus infection but I know that going to a doctor for it isn’t going to do anything so I just take decongestants and wait it out.
  5. Stress from work has also be huge problem lately as well.
  6. I also have been eating too much gluten and I am paying for it big time.  I will do really well some days and then other days and weeks all I want to eat is things that have gluten in them.  I am being kind of stubborn and still eating things I know that will make my head hurt but I am tired of not having what I enjoy.
  7. The final thing that has been giving me a headache  is all of the reading that I have had to be doing because of all the book reviews that I have coming up in the next two months or so.

Those are the things that are causing this almost 2 month-long headache.  I know there are probably tons of other things that aren’t helping as well.

What gives you a headache?

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MS Tuesday- Sayings & Graphics

MS

 

I follow several different MS Facebook pages and I am always seeing fun sayings and graphics for MS and I wanted to post them here so that I would always be able to find them if for some reason I needed them.  Here are ones I have found so far.13007_573022382726240_703674569_n 64678_10150599952098644_325823235_n 150732_10150816700128876_1282210341_n 182132_3894233866986_1036569138_n 198268_10150904742058876_1731190783_n 229312_10151077643763876_691997354_n 249622_10151048123948876_169396041_n 301538_584809928196525_860027000_n - Copy 302715_4350658837325_354717230_n 379295_4902877362443_187908437_n - Copy 404100_10151051808478876_2031454144_n 481135_10151004711758876_564571436_n 482354_582456875116124_388336461_n 535065_10150704164078876_53733744_n 545863_10151054197128876_267688931_n 557012_10151071931953876_1247509596_n 564713_10151056941673876_2006935935_n 603311_10151055490498876_1670670639_n b4fd75778be11ddbbd0d8118b86e77f8 il_fullxfull.183021016 images Mult multiple-sclerosis-ribbon

 Do you have any that you like?

Copyright secured by Digiprove © 2013 Margaret Margaret

Multiple Sclerosis Update

MSIt 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.

Copyright secured by Digiprove © 2013 Margaret Margaret

Guest Post- Applying for Social Security Disability with Multiple Sclerosis

I was contacted Molly Clarke  about doing a post on my blog about applying for Disability Social Security and I thought this post would fit in with my blog and could possible be useful to anyone out there that needs to apply as well.

 

Applying for Social Security Disability with Multiple Sclerosis

Multiple Sclerosis, or MS, is a chronic and progressive autoimmune disease that affects the central nervous system. Symptoms can become debilitating and worsen over time, eventually leading to loss of function that prevents gainful employment. MS comes in multiple forms, including:

 

  • Relapsing-remitting MS (RRMS)
  • Primary-progressive MS (PPMS)
  • Secondary-progressive MS (SPMS)
  • Progressive-relapsing MS (PRMS)


Symptoms that accompany each form vary, as does the progressive nature of the disease; however, the Social Security Administration (SSA) recognizes each as a disabling condition that can potentially meet the eligibility requirements for receiving Social Security Disability (SSD) benefits.

Meeting the SSA’s Definition of Disability

To meet the basic eligibility requirements for disability benefits, your disability must be expected to last at least twelve months. Because MS is an episodic autoimmune disease, meaning there are periods of symptom flare-ups and times when no symptoms may be present at all, satisfying this eligibility requirement can be a bit challenging.

The SSA will closely review your medical records to determine:

 

  • How often your episodes occur;
  • How long your episodes last;
  • How much time passes in between episodes;
  • What your symptoms are during episodes; and
  • How impaired you are during your periods of remission.


Because the SSA recognizes the episodic and progressive nature of MS, applications submitted with the diagnosis are typically evaluated first under the MS listing, and then under the “residual functional analysis”, in order to determine if the applicant qualifies.

The SSA’s Blue Book Listing for MS

The SSA utilizes a manual known as the Blue Book to evaluate conditions under standard disability listings. MS appears in the Blue Book under Section 11.00 – Neurological. To meet this listing and qualify for disability benefits, your application and medical records must prove:

 

  • You have partial paralysis, tremors, or involuntary movements in at least two of your limbs, impairing your ability to walk or use your hands;
  • You’ve suffered severe vision loss which cannot be corrected by wearing glasses;
  • You experience mood disturbances, decreased mental capacity, or memory loss as a result of an organic mental disorder; and/or
  • You suffer from muscle weakness and severe fatigue resulting from disruption of signals from the central nervous system, a cornerstone symptom of MS.

MS and Residual Functional Capacity

If your MS does not meet the SSA’s Blue Book listing, you may still qualify for Social Security Disability benefits. The SSA will evaluate your residual functional capacity (RFC) to determine the severity of your condition and whether or not it prevents you from finding and maintaining gainful employment.

Your sensory, memory, mental and physical limitations will be evaluated during the RFC analysis. The SSA will also look at your employment history, your education level, and your acquired job skills to determine if you are able to hold a job.

If your MS is found to limit you so that you cannot reasonably be expected to work, then you may qualify for benefits under a “medical vocational allowance”. This means that your MS symptoms do not meet the Blue Book listing but still prevent you from working.

Medical Evidence in Your MS Disability Application

To successfully apply for disability benefits you must provide medical records that back up your claim. Your application must include records such as:

 

  • MRIs, EEGs, CT scans, x-rays, spinal tap, and other diagnostic results documenting abnormalities and a formal MS diagnosis;
  • Vision, hearing and speech evaluation exams, if applicable;
  • All other medical records related to the diagnosis and treatment of your MS;
  • Results of mental or psychological evaluations, if applicable;
  • Documentation of the frequency, duration and severity of your episodes; and/or
  • Statements from your treating physician(s) documenting your diagnosis, prognosis and functional capacity.


Seeking Assistance

Because filing for disability benefits can be a long and complicated process, you may find that you need to seek the assistance of a Social Security advocate or attorney. A professional will be able to guide you through the process and possibly increase your chances of approval.

Submitted by: Molly Clarke
www.socialsecurity-disability.org/blog

Copyright secured by Digiprove © 2013 Margaret Margaret

Mulitple Sclerosis Update

Mulitple Sclerosis UpdateIt has been quite awhile since I have written and update about Multiple Sclerosis and what has been going with that.  I had an MRI at the end of August and it showed that I am still 100% stable which is amazing for me.  The MS has always been very active in me so that fact that I have been stable for about 4 years or so now is huge for me.  I know it has everything to do with the Tysabri and that makes it all worth it for me.

While I was at my doctors appointment she asked me is I wanted to get tested for the JC virus, which for those people who don’t know it is what cause people on Tysabri to get PML.  I told her no because I won’t stop taking Tysabri so I really don’t want to worry about it if I do have the JC virus.  She did tell me that if and when I do have another relapse I will have to get the test done to rule out that  I haven’t developed PML.  My chances of developing it now that I have been on it for about 4 years is really low so I am not worrying about it all.

Other than that there hasn’t been any changes.  I still have ups and downs when it comes to how I feel and things like that but that is pretty normal.  So there isn’t much else I can say.  I am stable and doing pretty well.

If you have any questions please let me know!

MS Tuesday-Depression & Anxiety

I am going to talk about depression and anxiety which are two  Multiple Sclerosis symptoms that have be living with for the past couple of years.  Growing up never had an issue with anxiety and what issue I did have with depression I was able to control and I didn’t have to take medication for it.

About two years ago I had to get on medication for depression because I literally could barely function at work and I was always on edge.  After I started the medication it helped but I noticed I could no longer handle things that I used to love to do.

For example I have always loved being alone.  My grandparents went on a cruise for 10 days last month and I was so anxious because I was home alone most of the time.  The day after they left I literally sat in my room because I was so anxious.  I also found myself checking the door locks a hundred times where as when they are home I never check them unless I have to get up and let one of the cats in.

I believe that in my case my depression and anxiety are cause by the MS.  I know that not everyone with MS will have both of these symptoms and that some people who have these symptoms but not have MS.

Before I started on Tysabri when I would have MRI’s to check and see what the disease was doing I always had active lesions but I rarely had any symptoms.  I believe that while I at the time didn’t show any outward symptoms that those active lesions are what caused my anxiety and depression issues that I currently struggle with.

Right now I take Zoloft for the depression and I don’t treat the anxiety because I have learned how to talk myself through it.  I also have found that removing myself from the situation that is causing the anxiety is a great way for me to cope with it as well.

I received the book called “It’s Not All in Your Head: Anxiety, Depression, Mood Swings, and Multiple Sclerosis” by Patricia Farrell.  I can’t remember the site where I was signed up and got the book for free but from the little bit of it that I have read it can’t wait to read more of it.

I would recommend the book to anyone with MS or anyone that has a family member or friend with MS.  Once I am finished with it I will for sure write a review and I think I will give it away to someone with MS.

In the end I want people to know that is you have developed anxiety or depression that you aren’t alone and don’t be afraid to ask for help.  At first it was hard for me to ask the doctor about it and start the medication but the more I learn about MS and what it can cause I understand why I have had to go on medication.

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MS Resources

This week I decided that I would post some Multiple Sclerosis resources that I have found and that I use on a regular basis.

Now I am sure there are ones I haven’t listed or haven’t found so if you have one you like please leave it in a comment and I will update this list with them.
Copyright secured by Digiprove © 2012 Margaret Margaret

MS Tuesdays-Medications That Don’t Work For Me

This week for MS Tuesdays I am going to talk about the  medications that I have taken to treat MS and why they didn’t work for me.  I have tried quite a few of them and I hope that people that this might help someone who is having a hard time finding a treatment that may work for them.  Please don’t base your choice for treatment on this post because just because something didn’t work for me doesn’t mean that it won’t work for you.  My best advice to research them and then with the help of your doctor go with the one that you both think will work the best for you.

I have taken 3 treatments other than the Tysabri that I am taking right now.  I have taken Avonex, Betaseron, & Copaxone.  I am going to talk a little bit about each one and how the effected me while I was taking them.

  • Avonex- I started out on this medication when I was diagnosed at 15.  Let me just say that this medication I took on and off for years because it was the one medication at the time that had the least amount of shots a week that you had to take.  This medication was rough for me to say the least.  They say it has flu like symptoms.  The best way to descride how the medication made me feel for the whole weekend after I took it is my skin literally hurt to have anything touch it.  It didn’t matter if I took the Benadryl like they told me to.  Every week I was sick all weekend and as time when on they said the reaction should get less and less but for me it got worse every week.  Like I said I tried this medication for years on and off because it was only taken once a week unlike all the other treatments at the time that are taken multiple times a week.
  • Betaseron-This medication is taken every other day.  So one this medication was literally sick everyday of my life because I never got used to the side effects of this medication as well.  This medications has the same side effects as Avonex has.  This one had an autoinject so that I could give myself the shot but me being me I couldn’t push the button I would sit there for an hour and in the end someone would have to come and push the button for me.  I hate giving myself shots and since no one else wanted to give me shots this medication did last long either.

Here is the link to where I talk about all the interferon treatments they have.

  • Copaxone-Now this medication isn’t an interferon so they thought that this one should work for me.  This medication is given through a shot everyday day.  Now this really didn’t work for me because I couldn’t give myself shots.  I think I tried this one for about a year but towards the end I wasn’t taking it regularly because all the injection sites would get red and develop hives.  I will also say that at this point in my treatment I was being a stubborn teenager and I just wanted to ignore the disease and act like it wasn’t part of my life.  Here is the link to the original post where I talk about all the possible side effects of this medication.

There are more than just these 3 medication out there for MS and last year the did release the first pill you can take for MS.  If you want to read more about that you can go and read this post where I wrote about it before.

The best advice I am give anyone is to research treatment options and then with the help of your doctor pick the one that will work best for you.

If you want to know more information or want me to write about something please let me know in the comments below.

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My MS Meds

I am not sure if anyone would be interested in the medications I currently on for my MS but I am sure there is someone who would be interested to know what is working for me right now and all the things I have tried that hasn’t work for me over the 11 years I have be treating the MS.  For this post I am going to talk about the medications I am currently on and what I am taking them for.

Tysabri-I am currently using this to treat the MS.  I have been on it for over 3 years now and even though it is dangerous I won’t stop taking it because it is the only MS drug that is out there right now that is controlling the MS.

Baclofen- I take this three times a day.  There are some days that I may only take it once but depending on pain & how I am feeling I may take it all 3 times.  I use this for the spasms I have and I also use this because of my back injury.  If I don’t take this at night I wake up stiff in the morning and in tons of pain.

Zoloft(sertraline)-I take this once a day and it is my antidepressant.  Depression runs in my family but I also think that the MS has made mine worse and also made me super anxious.

Loritab- I use this as needed for pain.  I get 20 pills a month and I usually use them all but  most of them are use the weekend and week after my infusion because that is when I tend to have the most pain.

Fiorinal- I use this for my migraines.  I have had migraines since I was in 5th grade.  Most of the time if I can catch it at the beginning I can stop it from getting super bad but on days that I don’t catch it or it doesn’t respond to the usual things I have to take 2 of these.  The thing I love about this medication is I can still function at work while I am taking it.

I also use things such as Benadryl, Tylenol, and Ibuprofen almost daily.  If you have any questions about any of the medications please let me know.  Next time I am going to write about what MS treatments I have used and why I stopped using them.

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What Is Multiple Sclerosis


I am sure  most of you know that I have Multiple Sclerosis (MS).  I was diagnosed when I was 15 or 16.  I know that many people don’t know anything about MS so I am going to write a little bit about it in order to help raise awareness to the disease and to open peoples eyes to what this disease is.

  • Multiple Sclerosis is what they call an autoimmune disease.  This means that the persons immune system for some reason decides it is going to attack some part of the body instead of only attacking viruses and things like that.   In MS the immune system decides it is going to attack the nerves of the CNS (central nervous system).  The CNS includes the brain and spinal cord.  They are not sure what triggers the immune system to think that part of the body is a invader and needs to be attacked.
  • MS symptoms happen when the immune system attacks the myelin around the nerves.  If you think of your nerves like a wire the myelin would be the protective covering around the wire.  If the nerve underneath the myelin gets hurt that is what causes the symptoms and some times causes permanent disabilities.
  • The body tries to repair the damage that is done but it is never the same. Once the nerve is damaged it won’t ever function the same again.
  • There are a lot of different symptoms that go along with this disease.  I am going to list some of the most common ones: Fatigue, problems with walking, numbness, tingling, slurred speech, tremors, stiffness, problems with vision, cognition, speech, and elimination.  Every person with MS has different symptoms. Which makes some people wonder if everyone that has MS actually has the same disease or if it isn’t a few different diseases that just get grouped in with MS.
  • Anyone can get MS.  Women are more likely to get it than men and so are people with a lighter pigmentation to there skin.  So Montel Williams who has MS is a real rarity.
  • They think MS has a genetic link but they aren’t sure what it is.  In my case there is no one in my family history of it.
  • You usually get diagnosed between the ages of 20-50.  I was a rarity and was diagnosed at age 15 or 16.  Although younger patients are now getting diagnosed because doctors are starting to look for it at a younger ages.  I have noticed though that I have had lots of activity show up on scans but I haven’t had many flare ups that people could see.  In fact if I didn’t tell you I had MS and what symptoms I do have you can’t tell I have it all.
  • MS is rarely fatal.  Most of the time people with MS with get a common cold of the flu and that is what will end up taking their lives.
  • There are several treatments out there that each do things differently.  I am on one called Tysabri and it is the most expensive and most dangerous of the drugs.  All of the current MS treatments are expensive and it makes it hard for people who don’t have insurance or even with insurance to afford.
  • It has been shown that treating the disease helps  to stop the progression of the disease but since all the treatments are so expensive there are many people who simply can’t afford to treat the disease.
  • There is always new treatments in the works and exciting things happening in research that hold so much hope for future generations.  They came out last year with the first pill you can take once a day for treatment.  Up until the pill came out all the treatments were either shots or an infusion.
  • There is currently no cure for MS.

I think I  covered most of the major parts of the disease but if you have questions or want any more information please let a comment and I will answer your questions!

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