It is time for another MS Tuesday post. I haven’t done one of these in a while because I haven’t had anything to talk about when it comes to my Multiple Sclerosis (MS). Like I have said before if there is ever anything you want to see in one of these posts please let me know and I would be more than happy to write about it.
Anyway today I am going to write about a weird feeling I had the last week. I am not sure if I have ever written about the very first MS symptom that I had but this post will ties into that. The first symptom that I know was the MS was when I was in high school and my left leg started to drag at random times and it just wouldn’t work. I can remember going to see doctors about this and everyone thinking we were making it up but long story short this was the first time I realized that something was wrong.
So last week I had a really weird feeling in my left leg. The best way I can describe it is by saying it felt like it was going to give out while I was walking. I haven’t felt anything like that before and I hope I don’t ever have to feel it again. My leg never did give out but it felt like it could at any moment. As I write it down I guess a better way to describe it would be weakness in my leg.
The medication that I take for the MS can cause you to get a condition called PML and the signs of that can seem like an MS relapse. So my doctor tells me that if I have any weird things going on that last for more than a day to call her and they will get me in to make sure that I am not getting PML. Thank god the feeling was gone by the next morning so I can just chalk it up to a random MS symptom. I am for sure going to tell her about when I see her in September after the MRI I have scheduled at the end of August.
Other than that I have been totally stable and haven’t had anything other than the headaches but I have had them for as long as I can remember so I forget most of the time that they are even there.
How have you been doing? Is there anything about MS you would like to know?
This week for the writers workshop I am going to write about what was going on this time last year and what I think of it all now that it is a year later. I went through the whole month of April and I really only wrote 5 actual posts. The few other posts I had were reviews of some sort. Here is a list of the posts from last year if you would like to go back and check them out. I also will list any changes in how I am thinking from last year to this year.
My MS Medications– all of my medication are basically still the same and since I am stable there is no reason to change them or to even mess with them.
Standing Still– I forgot that I wrote this post last year and to be honest I still feel like I am standing still but I also feel like I am all alone and I know that is because of how I have treated people. There are parts of this post that are still true and other parts that aren’t because I really don’t have any friends anymore.
How To: Break Your New Cell Phone– lets just say I haven’t broken a phone since this post and I better not break my iPhone or I am going to be pissed.
My Top 10 YouTube Channels– this has changed so much so I am going to make another Top 10 because I have some new ones and I think everyone would like. I still like all the ones I listed but there are some newer ones that I want to share with everyone.
How has your blogging changed from last year to this year?
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.
The weather has been super crazy lately and it is always changing.
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)
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.
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.
Stress from work has also be huge problem lately as well.
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.
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.
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.
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.
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.
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