I wrote a letter to my Congressman, and both Senators today.

Please allow me to introduce myself. I am a US Citizen, a Virginian, a tax payer and a voter. I am also a mother, daughter, sister, aunt, and the future wife of a US Soldier. I am 29 years old, and my world came crashing down around me in October of 2008 when I was diagnosed with Multiple Sclerosis.

“Multiple Sclerosis is an autoimmune disease that effects your brain and spinal cord. The body’s own immune system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis or lesions), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur”. The really interesting part of this disease is that these lesions do not effect the same exact spots on any given person, which means no two people have all of the same symptoms and no two cases are alike. This being said, there are over 300,000 different forms of this disease in the United States today, with and average of 200 new cases being diagnosed each week.

Please allow me to give you a brief summary on the effect that this disease has had on my body so that you may understand the frustration, and disappointment that I have experienced with the Virginia SSDI and Medicaid offices. When I was diagnosed, the MRI showed 4 lesions on my spinal cord and 7 lesions in my brain. Today, there are over 37. What started out as a numb patch of skin on my right calf turned into my entire leg going numb. This is what caused me to see the doctor, and with the help of 2 specialists, an MRI, blood work, and a lumbar puncture it was concluded that I have MS.

Since that day, I have experienced:
• Numbness all over my body (mostly in my legs and right forearm).
• Optic Neuritis
• Migraines
• Depression and Anxiety
• Insomnia
• Fatigue
• Arthritis in my lumbar spine
• Balance and coordination problems
• Muscle spasms in my back and legs
• L'Hermitte's Sign (electrical surge feeling from neck to limbs when you bend your head)
• Girdle band pressure (referred to as the MS Hug, it’s like being attacked by a Boa Constrictor)
• Crawling skin feeling that increases with warmer temperatures
• Stabbing pain in my neck, between my shoulder blades and a crushing feeling in my lower spine.
• Night Sweats
• Cognitive issues (memory and concentration problems)
• Neurogenic Bladder (requires self cathing)
• Joint pain and stiffness

These are not all of the symptoms that I have had from this disease, to list each and every one would take days. This does not include the side effects of the medications used to treat the disease or the above symptoms. From the medications I have experienced Urinary Tract infections, yeast infections, hives, swelling at the injection sites, nausea, constipation, excessive weight gain, blown veins, withdrawals from certain meds, heartburn, and the list goes on and on.

I am no longer able to work, and can barely function on a daily basis from this disease. I have lost my feeling of independence as I have to rely on my family to help me with simple tasks (cleaning, cooking, getting to and from doctors appointments, and anything else that needs to be done) that most people take for granted. I am fortunate that I am still able to walk, but I can only do so in short distances and am in excruciating pain after standing for more than 20 minutes. I am no longer able to run and play with my daughter, I can’t just jump in the car and go when I need to get somewhere. Staring at a computer screen or trying to read for more than an hour causes the Optic Neuritis to act up. I am trying to learn to adjust to this new life, but each day brings new symptoms and new challenges.

I was laid off in Jan of 2009. By Feb, the numbness and balance problems had gotten so bad that I was no longer driving as I could not feel the pedals under my feet. The numbness is a constant problem, the balance issues come and go. I had 14 MRIs done in the first year of being diagnosed with this disease and I have not had a single one that did not show new lesions.
In June of 2009, I realized that I would not be able to return to full time employment and I applied for Social Security Disability benefits. I was sent an email several months later requesting further information, which I submitted by mail as requested by the SSDI office. I then received a denial letter stating that the requested paperwork was never received. At this point I filed an appeal and resubmitted the same paperwork. Another two months go by without a word from this office. I called to check the status on the claim and I was informed that I would have a decision by Jan 15 of 2010.

Early Jan 2010, I get a call from the SSDI office informing me that they cannot process my appeal because when they denied me the first time, my application was taken out of the system and I now have to reapply and start the whole process over. I asked to come to the office and have a case worker assist me with this application. That appointment was on Jan 15, the day I was supposed to have a decision regarding this appeal. The application was filed again, along with every doctors note and MRI report that I have in my possession. I am told on this day I will not get a decision for another 3 to 4 months. I had been fortunate enough to receive unemployment benefits until Dec of 2009. At this point, and to date, my only income is the $500 a month I receive as child support. I was told by the SSDI case worker to go to Social Services and apply for assistance and Medicaid. I was approved for Medicaid and food stamps and that is it. The rest of my bills are falling further and further behind each day and it seems my credit score is deteriorating as steadily as my health.

On Feb 19 I received another packet of paperwork to fill out for my SSDI claim. This was a Friday. I then received a call Monday morning from the SSDI case worker asking why I had not returned this paperwork. The paperwork has since been filled out and submitted and I am still waiting on a decision. Nine months after applying for disability I still do not have a decision.

To make matters worse, on Feb 11, I slipped on the ice from our massive snowstorm. This resulted in a compression fracture of two of my vertebrae. The Emergency Room doctor referred me to an Orthopedist who I saw the following day. He ordered an MRI to see if the bones were pushing into my spinal cord and to make sure no bone fragments had gone into the cord. He also prescribed a back brace that was supposed to immobilize my back so that it could heal properly. It was prescribed as a medically necessary item. It took me a week to find a prosthetics company that took Medicaid who was willing to fight for me to get this brace. I went in, was fitted for the brace and all of the paperwork was submitted to DMAS (Medicaid) on Feb 19. And we waited, and waited, and waited. I called Medicaid with the billing code for this brace to verify that is would be covered prior to going in on the 19th. I was told that yes, as long as it was medically necessary it would be approved.

On March the 8th almost a month after breaking the two bones in my back, the prosthetics company received a response from Medicaid that stated the brace would not be covered because I was not in in-patient intensive therapy. I received a letter in the mail two days later telling me the brace is not covered and I may appeal the decision in writing within 30 days. I do not know yet the irreparable damage caused to my spine by my bones not being able to properly heal. What I do know is that I also had to fight and be rescheduled 3 times for the MRIs that my neurologist ordered while the hospital waited on Medicaid to approve them, which also meant putting off my monthly infusion until we get those results.
Medicaid will not approve a $500 brace to help the two broken bones in my spine heal properly. If they do not heal correctly, I wonder if they will pay the $20,000 + for corrective surgery, or if that too will be denied. This is the government run healthcare system that is in place in this country and our representatives do not understand why so many Americans are opposed to a government takeover of their health care?

I am begging for your help in resolving these issues with these two agencies. Not only for myself but on behalf of the other 300,000 people in this country who live with this disease every day of their lives. There is no cure for MS. The disease modifying drugs used to help slow the progression are only available in injections or Intravenous infusions. The cheapest of these drugs costs over $2000 a month if you do not have insurance. The IV Tysabri that I am currently taking as a once a month infusion is over $6000. Medicaid did cover my last infusion, but I am uncertain if they will continue to do so. I have run out of places to turn for help and I am drowning in debt while waiting for a decision from SSDI. I am in pain and on a steady supply of pain killers with two broken bones in my spine and Medicaid refuses to cover a back brace. I don’t know who else to turn to at this point. Any input on how to get any of these issues would be greatly appreciated.

These are the effects of our government run systems. I am begging you to vote against this healthcare reform bill. Instead, spend time correcting the systems that are already in place and failing miserably. Your voters are dying while waiting on Medicaid and Medicare to approve prescriptions and necessary testing. The fact that our presidential approval ratings are now in the single digits should tell you that your constituents are unhappy with the decisions being made in your offices. The nation is divided on this health care reform bill, and no other issues are being addressed by our government at this time. One year has been spent on this one piece of legislation while our soldiers are off fighting a war and our unemployment rate is rising.

Thank You,