Confessions of a Middle Aged MS Patient

Diagnosed, What Now?

I have not talked to much about myself in my posts yet so I figured today would be a good day as I don’t have the energy to attempt to write something for which I will have to verify my facts or other such actions that I usually have to take to ensure that I am providing correct and accurate information to my readers.
It has been a little over 3 months since I have been diagnosed with MS and I am still having a hard time dealing with many of the symptoms I have been experiencing, simple things such as typing this post are not so simple anymore. Actions that used to come automatically are now a chore. It seems like every few weeks since my latest attack that lead to my diagnoses I have developed another symptom, I almost feel as though I am learning everything I can about MS and the more I learn the more symptoms that appear. I keep wondering when things are going to get better or worse yet, are they even going to get better. I keep hearing people say “I have a friend/relative who has MS and they lead a pretty normal life”, well there is nothing “pretty normal” about the way I feel every day. Even on my best day I am not even close to feeling normal.
Even though I do know that things will very likely get better it is a scary feeling not knowing when or if they will for sure, that is part of the problem with this disease, it seems there are more questions then there are answers. Even the medication I have been placed on is somewhat a mystery. I self-inject interferon beta-1b, also known as Betaseron, every other day as do many other people with have MS, interferon beta-1b and interferon beta-1a (Avonex & Rebif) have all been shown to help reduce flare ups the only problem being that they are not sure how they work to accomplish this nor do they know what long term effects there may be. That’s kind of scary for me to think about, this drug is supposed to help reduce the flare ups yet it seems like I have been having one constant flare up for the last 4 months. Additionally, I really don’t like the idea of not knowing what kind of lasting affect this drug may have on my body. I have started to wonder if I should stay on the drug or possibly put taking the drug on hold for awhile and see what develops with stem cell research. I know there have already been some positive results with some new treatment here in the Chicago area where I live that has gotten quite a bit of publicity. Of course another part of me is thinking that the best course is to stay on medication that has been shown to help many other people. It’s amazing how overwhelming this all this!
Although I was only diagnosed a few months ago I am sure that I have had MS for at least 8 years now due to some problems in the past that I, knowing what I know now, can attribute to MS. I believe the incident that took place back then was probably my first flare-up with the most recent one being my 4 and worst flare-up. The two in between have taken place in the last 4 years so that makes 3 very strong flare-ups in 4 years. The second flare-up took place while I was managing a car wash during the winter; I was working in water in Chicago winter conditions and began experience numbness in my hands for a few weeks but attributed it my job as it felt like my hands were getting frostbit. The third attack took place about 2 years ago and this time it was much worse with my legs, arms and hands becoming extremely numb as well as experiencing a hot/cold sensation up and down my back. This time I went to a doctor and was diagnosed with a vitamin deficiency and told to take a multi-vitamin every day, well that worked out well didn’t it. This last attack that has led me here began right after Christmas, twice in one week in the evening while watching TV I experienced this mind numbing sensation travel through my head, the sensation only lasted a few seconds but was incredibly debilitating. I returned back to work after the holidays and on my first day back 15 minutes after getting to work the same sensation started hitting me but this time it just kept coming one after another. For weeks they lasted, in varying intensities but always there. Certain things would trigger the sensation such as my wife coughing or the toilet seat slamming, it was very strange it wasn’t just a noise being loud because other loud noises would not trigger the reaction. After that that day at work it wasn’t long until many tests were ran and the results all were pointing to Multiple Sclerosis. Blood tests, x-rays, MRIs, a spinal tap and 2 neurologists later and here we are with me being diagnosed with MS, what now?



James Bishop April, 2009

Illinois State Senetor Dick Durbin Responds to Email

April22, 2009
Mr. James Bishop

Crest Hill, IL60403

Dear Mr. Bishop: Thank you for contacting me about multiple sclerosis (MS) and efforts to combat this devastating disease. I appreciate hearing from you. I have consistently worked to secure more funding for medical research, including MS research, through the National Institutes of Health (NIH). Congress approved increased funding for medical research in the Omnibus Appropriations Bill for Fiscal Year (FY) 2009, increasing NIH's funding by $937.5 million. NIH's overall budget for FY 2009 is $30.3 billion. This infusion of resources will help NIH fund research projects addressing a wide variety of medical conditions, including additional research including multiple sclerosis. The National Institute of Neurological Disorders and Stroke Projects also receive more than $1.5 billion for medical research in FY 2009.These investments in biomedical research can help enhance our knowledge about the underlying genetic risk factors and environmental triggers that cause MS. I am hopeful this work will speed the discovery of a meaningful strategy for improving the quality of life forAmericans who live with this difficult disease. Thank you again for contacting me. Please feel free to keep in touch.


Sincerely, Richard J. DurbinUnited StatesSenator

RJD/ns