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.
I am sure everyone knows that I have Multiple Sclerosis and because of the medication I use to treat it I have to get MRI’s every 6 months. I had my latest MRI on Saturday the 16th of February. I received a call on the Friday before my MRI from my health insurance company and all I could think was great now what is their deal.
For a little back story I have always had problems with insurance companies. It always seems like since they have to pay out for me they tend to give me the run around and what not. One time a few years ago I actually had an insurance company make everyone that they paid money to send the money back to them and then I had to fight with them in order to get them to pay for the claims that they requested the money back for. Lets just say that fixing the mess took over a year and I am still sure I paid to much on a few of the claims because I just got tired of fighting with them about it all.
Anyway back to the story when I answered the phone they basically wanted me to change the place of my MRI because the place I was getting it done at wasn’t one of their preferred providers. I was dumbfounded because I was having the MRI the next day and I know enough to know that there is no way that there would be an opening on a Saturday to get a MRI if most places even do MRI’s on Saturdays.
I understand why they called about it but they didn’t have to give me hard time when I told them that I was okay with paying more because my doctor works out of the hospital and it is easier for me to keep track of my records and what not if everything is done in the same spot. I get that they want to save me money but if I am okay with paying more than they really should just say okay and get off the phone.
I am glad they were trying to save me money and everything but in the end if I am okay spending more money then just leave it alone. I may spend more money for the MRI but it means that I don’t have to worry about my doctor getting the results or anything like that because she will be able to just pull them up in the computer. I have had the scans done at other places before and it always turns into a big hassle when it comes to getting the results and things like that. So that is the latest thing that drove me insane.
It 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.
At that beginning of September I had an appointment with my Multiple Sclerosis doctor to get the results for my latest MRI. I have an update coming up that will let everyone know the results and all the fun stuff.
Anyways back to the story at hand. I was sitting in the office meeting with the doctor and she asked me how old I was. I said I was 26 and left it at that. Well after I got home from the doctors I started to wonder if I was actually 26 or if I was 27.
I was looking at the print out that they gave me after my appointment that says what we are doing and when my next appointments are. The paper said that I was 27. I had to go and ask my grandma how old I was and she said she thought I was 27. Well come to find out I spent all year thinking I was 26 and turning 27 next month. Looks like I was wrong and I am turning 28 next month so I vote that I get to have two birthdays because I got two years older this year!
All I can say is that I get to have two birthdays this year and I feel like a total idiot!!!! Gotta love not knowing how old you are! The other funny thing is as long as I can remember everyone in my family has always forgotten how old I am so I guess I am just following their lead!
What is one thing you forgot that you shouldn’t have forgotten?