Federal Funding Needed for M S Research

For those of you who don't know, I have Multiple Sclerosis. Although I've had it since about 1995, it wasn't accurately diagnosed until May, 2006. At present, I have Relapsing - Remitting MS.

There are 4 types:
1. Relapsing-Remitting MS (attacks followed by periods of partial or total remission, which may last months or even years)
2. Progressive Relapsing Multiple Sclerosis (follows a progressive course from onset, punctuated by relapses. There is significant recovery immediately following a relapse but between relapses there is a gradual worsening of symptoms)
3. Primary-Progressive MS (disease worsens steadily from the onset)
4. Secondary-Progressive MS (starts out as relapsing-remitting then becomes progressive)

No two people with MS have exactly the same symptoms, or to the same degree. Each person's MS is as unique as their fingerprints. Symptoms are a direct result of nerve demyelination, and damage to one site usually causes completely different symptoms than damage to another.

Although MS can leave a person wheelchair bound, many MS symptoms are hard to see, such as fatigue, pain, cognitive problems like memory loss or trouble solving problems, weakness, blurred vision, numbness, prickly or tingling sensations, heat sensitivity, dizziness, and bladder or bowel problems. Some people assume that you don't really have a disease because you may not look sick. If they can't see it, there really isn't anything wrong with you. Pain, blurred vision, numbness etc. are internal. Cognitive symptoms are often perceived as you simply being thoughtlessness or not concentrating. Fatigue is seen as laziness.

Everyone experiences fatigue, but people with MS are hit hard by a kind of fatigue that can be overwhelming. This can be hard to explain to outsiders. People with MS often expend extra effort on activities-such as lifting legs to walk - which once were second nature. These efforts add to the burden of MS fatigue. "It can be frustrating when you tell someone you're tired and they say they know the feeling, they had a big night last night, too." There are 2 types of Fatigue associated with MS: Chronic Persistent Fatigue —Activity-limiting sluggishness or lassitude that goes on for more than six weeks, more than 50% of the days, during some part of the day; and Acute Fatigue —Activity-limiting sluggishness that has either appeared (new) or become noticeably worse during the previous six weeks. Acute fatigue can be an early warning that other MS symptoms are about to flare up or become worse.

Sometimes, even doctors don't seem to take invisible symptoms seriously, and as a result sometimes symptoms are not accurately assessed and treated. In my case, my former primary care physician totally misdiagnosed me. The overwhelming fatigue he wrote off as depression. The blurred vision he chalked up to turning 40. I went from 20/20 vision to bifocals literally overnight, and my vision was still blurry. For the constant muscle spasms he suggested muscle relaxers. When I asked him if I had MS ten years ago, he said I did not. Instead of looking at all of my symptoms as a cluster, and realizing that in all likelihood I did have MS, he treated all of my symptoms individually. I spent 11 years going to a chiropractor sometimes as often as 3 times a week to help with the spasms and spasticity.

Nobody wants to have multiple sclerosis. So with my primary care physician denying that I had MS, it was easy for me to deny it for many years. It is also easy to begin to think you are a hypochondriac, since you have all these symptoms, but no diagnosis.

My MS wasn't diagnosed until I had a serious bout of vertigo and my new primary care physician ordered a brain scan. Although I am in remission right now, I did not go back to "normal". I have some lingering cognitive problems, dizziness, ataxia (a swaying and "drunken" type of gait), and severe fatigue (taking Provigil has definitely helped).

MS is a chronic, often disabling disease in which the body attacks itself, resulting in damage to the nervous system. Symptoms can be mild, such as numbness in the limbs, or severe with paralysis or loss of vision. Most people with MS are diagnosed between the ages of 20 and 40, the prime years of their lives. The disease course is unpredictable for each person diagnosed with MS, but for every person with MS, the physical and emotional conditions of the disease also impact their families, their jobs, every part of their well-being.

Right now, the National MS Society is running a Petition Drive to Increase Federal Funding for MS Research. Federal funding for multiple sclerosis research is in serious decline. Without adequate funding, for example, we might not have the five existing MS treatments and several drugs in clinical testing for people with MS. The NIH paved the way for those discoveries, but funding for the NIH continues to decrease.

You can help by visiting http://capwiz.com/nmss/issues/alert/?alertid=9167296&type=CU and signing the petition.

Thank you!