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
Vicki's MS Gazette Debuts
12 years ago
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2 Comments:
Hi Jamie, I'm enjoying reading your blog. But I had a request. Would you consider publishing a full feed? It is easier to read that way.
Hi Jamie! Thank you for inviting me to your page. I am a follower now and will continue to keep tabs on you. With that said I want to make a few comments/suggestions to what you have posted. If I was reading correctly you are "taking your shots however you have been in an exacerbation ("Flare Up") for about 4 months on and off and it feels to you as though it has been a constant flare up"????
That is absolutely true and can happen. First of all have you had any steroid treatments in the past 4 months for this flare up? If not this probably is still all one "Exacerbation" these can last a very long time. If you have had the steroids then let me try to explain steroid treatment. They give those to you to try to calm down the exacerbation. Sometimes it works fast and symptoms go away. Sometimes they can still take awhile because it sometimes your flare up is going to be super extreme and the steroids try to stop it but not able to stop it quick. The steroids stay in your body for a long time and keep working for you. Also a note to remember... Steroids pretty much kill your immune system... Meaning that after doing steroids (I.V.) your body is suseptible to picking up any virus and not able to fight it off.
The shots you are taking are not a quick fix at all. My first year I had 4 exacerbations (severe) in 1 year. You are really only able to do the I.V. steroids at most 1 time every 6 months. I had them 3 times that year. While still taking the shots. I was having extreme side effects from the shots along with from the steroids and told the Dr. I wanted off the shots. He eplained to me that it can take up to 2 years of taking the shots to see a slow down with the exacerbations however what the are doing is trying to help with the permanent damage from each exacerbation. He did agree that the side effects from the shots I was taking "Rebif" were extreme so we swithced to Copaxone. Yes I have to do them daily but they aren't as strong as the Rebif hence the reason we have to take them daily.
If you are not experiencing side effects from your shots taking them every other day then stay on them and be patient. They are helping for "FUTURE" help. As for the "right now" if you haven't taken the I.V. steroids talk to your doctor and ask them if they can do this since you have been having a Flare Up for 4 months. If you have taken them then you need to let "time" help you.
Also let me add this one factor..... You may not like this one but we all don't like to hear this one..... Here goes!!!! Everytime we have an exacerbation... Obviously we are having "symptoms"... The problem is that each exacerbation is causing damage to parts of our brain and central nervous system. Sometimes just damage that will repair itself and sometimes damage that becomes "PERMANENT" and can't be repaired. That is the scarey part of MS.
The parts that get repaired the symptoms should go away in time or at least most of the symptoms. The Permanent Damage will leave us with those symptoms most likely forever. Those symptoms becaome a part of your daily life. Eventually you sort of get used to dealing with those "part of your life" symptoms.
I used to think that the permanent damage from 2.5 years ago was the worst thing ever (burning and prickling sensations) until the next exacerbation when the vertigo and unable to walk with out a cane symptoms arrived. I realized at that point the the prickling and burning sensations were nothing compared to the new symptoms. So when I deal with the burning and prickling I just try to ignore and keep moving on. Gratefully remembering that there are worse symptoms I have had to deal with and more probably to come. I hope this makes sens to you and sorry to write a book on your page however I think you needed some assistance. Keep following my blog because this is a lot of the topics I write about.
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