I met Jen on-line many moons ago when I was searching for other people who blogged about their Multiple Sclerosis. Jen is a strong advocate for those who have MS and works hard to spread awareness of this disease to the larger community. Jen does not hesistate to share her knowledge and provide information about Multiple Sclerosis to whomever needs it. She is a good person to know and especially if you are newly diagnosed with this disease.
I present to you…Jen!
Type of MS Jen has: relapsing-remitting MS for nearly 11 years
Website: MS Strength
About Jen: I am currently working from home as a part-time writer while also being supplemented by Social Security Disability Insurance (SSDI.) I volunteer at my local library system a couple of days a week as a volunteer program assistant and as an English conversation group leader, where I assist foreign-born patrons with their speaking skills (I absolutely love doing this!) I am a member of my local MS Society and I work at their annual walking and biking fundraiser events.
When were you given your official multiple sclerosis diagnosis and did it take a long time?
I was officially diagnosed with relapsing-remitting MS in May of 2005, after having seven years of vague, increasingly debilitating symptoms.
Did you have any gut feelings that you might have this disease before your official diagnosis?
I was working full-time as an ultrasound technologist in 2002 when I had a more severe attack. My right hand became dysfunctional and clumsy, making writing, combing my hair, and scanning very difficult. I still wasn’t clear about what was going on, but I knew it was serious. One of the radiologists I worked for immediately said, “It sounds like you might have multiple sclerosis. Let’s do an MRI.” This started the process of me consulting with a neurologist and getting a “probable MS” diagnosis.
What tests did they do to get the diagnosis?
My presenting symptoms were analyzed by the neurologist. There were also several MS signs— Babinski’s sign, Lhermitte’s sign, hyper reflexes— that were evident during the neurological exam. I had serial MRIs every six months from 2002 until 2005. I also had two lumbar punctures (spinal taps) to rule out other nervous system disorders. I’d had a bout of Lyme disease in 1997, so the second spinal tap was to rule out any traces of residual Lyme bacteria. Blood work ruled out other problems such as lupus and rheumatoid arthritis.
** Can you tell us more about the Lyme disease you also had during the time of your diagnosis of MS? Do you feel sometimes MS is hard to diagnose because of these other diseases which can mimic the symptoms of MS?**
I contracted Lyme disease a year before I experienced what might have been my first MS attack: numbness and tingling in a small area of my lower back. New Jersey has a large deer tick population and I had been working outside in the springtime. I developed the tell-tale “bull’s eye” rash on my stomach, accompanied by a high fever, stiff neck, throbbing headache, and general weakness. I was treated immediately with a high-dose antibiotic, but the Lyme disease made the whole process of diagnosing multiple sclerosis more difficult since symptoms such as tingling, numbness, fatigue, and cognitive impairments can be present in both illnesses. My general neurologist did not want to classify me as a case of definite MS because he wasn’t sure what was going on. My MS attacks were still somewhat vague at that point.
What was your reaction to hearing that you have this disease?
Well it’s about time! Seriously: pretty much everyone involved— my primary doctor, a couple of other neurologists that my own neurologist consulted with, the radiologists, and the doctor who did my spinal taps— thought I had MS, but my general neurologist (not an expert in MS diagnosis and treatment) was hesitant to positively diagnose me. When I experienced double vision in 2005, I was switched over to a multiple sclerosis specialist and the diagnosis and treatment plan began to fall into place.
What sorts of symptoms do you or have you experienced?
I’ve had pretty much everything imaginable, except optic neuritis. Let me start from my
head and work my way down:
***anxiety and depression, mild cognitive problems, vertigo, headaches and right-sided facial pain/ eyelid twitching, facial numbness extending from the ears and nose to the chin, Lhermitte’s sign in my neck, and problems swallowing
***right forearm pain, tingling, and numbness and left hand numbness and tremor; the MS “hug” around my upper torso that feels like a constricting corset; aching pain in the lower back, hips, rear, and thighs; genital tingling and numbness; bladder and bowel urgency and/or hesitancy/constipation
*** left leg tingling and numbness from hip to toes, right leg tingling and numbness from knee to toes, muscle rigidity and spasticity in right and left legs similar to restless leg syndrome, “feet on fire!” or burning sensations in the feet and calves, balance issues due to left leg instability, walking problems during relapses
***general fatigue and limbs feeling like lead on bad days
What meds, treatments, or alternative therapies have helped you the most?
I have reduced my medication regimen— during remissions— down to an antidepressant for coping and Betaseron, one of the disease-modifying drugs. I used to take Baclofen for muscle spasms, Nortriptyline for headaches, and Neurontin for neurological pain. For reasons unclear to my doctors or me, I am able to manage now without these other meds during times of remission. I have seen a decrease in day-to-day symptoms and the number and severity of MS relapses since starting the Betaseron almost four years ago. MS is so subjective: this improvement could also be the result of lowering my stress levels and working from home, the possible remylination of my nerve coverings, and/or maintaining a positive attitude. I have no idea, but the elements are working.
** Do you have a personal philosophy that has helped you to cope with having a chronic illness?**
I have given up a lot of the negative, self-destructive thinking that MS can cause (with the ongoing help of a therapist.) I try to keep my moderate disease course in perspective and maintain a sense of humor. Lastly, I actively seek joy because this makes all the difference between having a good day and a bad one.
What advice would you give to someone who has just been diagnosed with MS?
I would say that so many of us have already been in this position. Whether our cases are mild or severe, every one of us has experienced fear, isolation, sadness, and uncertainty. As time goes by, patients become more acquainted with the disease and it might not be the biggest thing on a person’s mind. We grow to accept what is going on and it’s not always awful.
What is the worst thing about this illness?
I don’t enjoy the unpredictability. It makes planning things difficult. But I find ways to work around this.
Are there any silver linings to having MS?
I have learned so much from having this disease. I’m a big jokester by nature, but I have acquired serious compassion, some patience, tolerance, and tenacity. I have pared down my lifestyle and I now enjoy the simple pleasures a lot more: a great cup of coffee, a good read, easy friendships, family fun, and really good food.
** Do you believe that we will see a cure for MS in our future?**
This is hard to say. My neurologist believes there will be a cure in our lifetime, so I’m hopeful. In the meantime I’d settle for an oral disease-modifying drug with a higher effectiveness and less side-effects.
** If you could tell all the doctors and neurologists something that they would listen to, what would it be?**
Never underestimate the power of patient wisdom. We are our own best advocates, we best know our own bodies, and we have a lot to say. Please listen with open ears and open minds.
** Last thoughts?**
Thank you for providing these bios, Merely Me. They’re definitely showing the full spectrum of the multiple sclerosis experience.