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What I Wasn’t Told

Blog Summary

When I was diagnosed with MS, I was told a lot of things about how I should treat my condition from a medical standpoint—I was told what MS is. I researched MS and realized that my life was going to change.   But there were a lot of things that I wasn't told. They weren't intentionally hidden from me; because I honestly don't think these things are relevant from a medical standpoint. How MS would change me over the following 13 years couldn't have been anticipated by a doctor or internet story...

When Does MS Start?

Blog Summary

Neurologic health care providers generally are very good at identifying new disease activity in MS. They use three criteria: - The clinical history - The neurologic exam - Changes on central nervous system MRIs...

My New 5-Inch Heels

Blog Summary

1993 was a normal year. I was a 20-year-old classically trained opera singer with a normal life. I was a tall female, and it always seemed like I was getting the short end of the stick in relationships. I didn’t know it, but another short end of a whole new stick was heading my way.  In December, my left arm went numb. Blood tests, an MRI and a variety of other tests were performed. Brain cancer and Lou Gehrig’s were offered as possibilities, but nothing certain. Advice was to observe and watch. For two years, there were no additional symptoms, which put me in the persistently uncertain world of “no news is good news..."

MS Awareness: Your Support Matters

Blog Summary

March is multiple sclerosis awareness month. Well, on the calendar it is.   But this past March, the world has been occupied with COVID-19. So, naturally and rightly so, our attention and efforts have shifted to keeping ourselves, our families, our communities and the world safe. Life has gotten insurmountably scarier for those of us who are medically compromised, and I imagine it's intimidating for many others as well. I won't attempt to compare COVID-19 and multiple sclerosis. However, the same empathy, compassion and support we desire for the MS community should be extended to people and families impacted by COVID-19. While we continue to support each other, I'm confident that our amazing medical professionals and government will get a handle on this crisis and life will prevail...

Questions to Ask Your Neurologist About Your MS

Blog Summary

You’ve just been diagnosed with MS. You’ve heard about the disease (“OMG, I’m going to be in a wheelchair”). You’ve heard something about the medications that are now available for MS, but know little about them. You’ve seen other people with MS, but how does their course relate to yours? What can you do to prevent disability? These and many other questions crowd in on you, and it all seems overwhelming. You need to spend more time with your neurologist or nurse specialist, but don’t know where to start. Hopefully the following questions to ask will be a guide for you...

Finally Diagnosed

Blog Summary

I had the first MS symptom in 2007 while I was in college and just finished my last class. Suddenly, there was severe tingling and numbness in my whole left upper limb. I thought it could be a result of strenuous day. Everyone left the classroom, and I was trying to release my hand. But it was not releasing. Two of my friends came back after noticing me not coming. We went to the hospital.  In the emergency ward, basic tests were done. I could sense that my heart was beating very fast. It was about 6 p.m.. The senior doctor arrived and checked me. He suggested an immediate X-ray and the results came back normal. So, he referred me to orthopaedic doctor. The next day, the orthopaedic doctor suggested I get an MRI of my cervical spine. He suspected I had thoracic outlet syndrome. But when my reports came normal, I went on to hear more suspected illnesses that could be causing my odd symptoms: nerve impingement, peroneal nerve injury or palsy. My tingling and numbness subsided before any nerve conduction tests were done, and my other symptoms like blurred vision, just went away.

Ready, Set, MS: My Sudden and Not-So-Surprising Diagnosis

Blog Summary

I specifically remember driving away from work on a Friday afternoon feeling like I had somehow hit my elbow and it was tingling. "Weird," I thought, as I shrugged it off. I was headed to one of the last Anaheim Ducks games of the season, and I was so excited. It was late March and a group of friends and I were going to watch from a suite, which would make it a memorable night for more than one reason.   I woke up to a beautiful sunny, lazy Saturday morning to take my dog, Cooper, out for a walk. I noticed that the same feeling in my elbow from the day before seemed to have migrated to both hands. As we walked around the community, the same sensation seemed to radiate up my legs from my feet, leaving me feeling a bit unsteady. I jumped in the shower, and the numbness and tingling seemed to wrap around my entire torso. Immediately, my inner monologue shouted: MS...

What to Do If Follow-Up MRIs Show New Lesions

Blog Summary

You’ve been diagnosed with MS and started on a disease-modifying therapy. At a follow-up visit, your neurologist asks that you do another series of central nervous system MRIs. You ask, “Why? Is it really necessary? What would you do if there were new lesions?” These questions are excellent and reasonable. The answers however, are not straightforward. There is no cure for MS at this time. That said, starting a disease-modifying therapy is most important. Responses to disease-modifying therapies vary greatly. In some individuals, the response is excellent, with no evidence of recurring disease. In others, new lesions and even attacks may occur despite treatment. Not every new lesion is associated with an attack, and new lesions can gradually accumulate silently with no immediate change in course. However, increasing tissue damage may result in increasing disability over time. Thus, monitoring your central nervous system with MRIs after starting a disease-modifying therapy is essential to determine your response to treatment...

A Double-Edged Sword

Blog Summary

“Do I really have to have another brain MRI? It’s really very expensive, and I don’t know if it’s safe?”   These are totally understandable concerns. Being placed into a narrow, noisy tube for what seems like forever is certainly unpleasant. However, understanding the role of central nervous system MRIs in diagnosing and managing the treatment of MS may make the experience somewhat more tolerable.

Making a Diagnosis of MS

Blog Summary

There is no avoiding it. Seeing a neurologist for evaluation of a diagnosis of MS can be very stressful. However, understanding what is needed to make a diagnosis may, at least in part, ease some of the anxiety.   Even with all the latest electronic and laboratory studies, an MS diagnosis is still one of exclusion. Unlike a positive biopsy for cancer, there is no single finding on history, exam, or diagnostic study that is unique, or only found, in persons with MS. Thus, making a diagnosis of MS remains one of excluding other diseases that can mimic MS. While this may seem easy, a recent paper from two MS centers reported that 1 out of 5 persons sent to the centers with a diagnosis of MS did not have this disease.1 More than 100 MS “look-alikes” have been described, but most are very rare, and only the most common ones are usually looked for. These include illnesses such as diabetes mellitus, lupus, Sjøgren’s disease, migraine with aura, high blood pressure, brain tumors, blood vessel inflammations and infections...