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Posted: Mon Aug 04, 2008 6:25 pm Post subject: New with questions
I'm so happy to FINALLY found an unbiased website community of those affected by MS! I was diagnosed 1 year ago and am on Rebif. I feel like the MS LIfelines nurses just have a script to read and are only serving the drug company. They call me about every 3 months or so (when it's time to re-order more) and always ask if I have had an INFECTION-what gives? After a while, I feel they really don't care.
Brief history- I had one attack in April 2007 and doc thought it was carpal tunnel and muscle strain. I couldn't even lift my arm to wash my hair! After a few months of MRI and lumbar puncture, the dx came. It was devastating! I am almost 40 and the mother of 3 wonderful, active boys! I love to run, enjoy the outdoors and living life to it's fullest! Many other websites have practically told me to abandon my "former" life! It's so disturbing! I don't run as fast or often as I used to, but I do try. I am learning to adapt to new subtle and not so subtle "twinges" and burnings, quadricep heaviness, occasional knee dropping, and exhaustion. Question-When do you know you are having a "real" attack versus just a few days of extra leg heaviness, muscle stiffness, etc? My neuro said a "real" attack would be BIG. All these little things mess with my head Any thoughts?
Posted: Mon Aug 04, 2008 8:31 pm Post subject: Re: New with questions
Hi Sky,
Welcome to ThisIsMS. I'm sorry that you find yourself here but I hope that now that you're hear you can find a supportive group of people.
Sky wrote:
I love to run, enjoy the outdoors and living life to it's fullest! Many other websites have practically told me to abandon my "former" life! It's so disturbing! I don't run as fast or often as I used to, but I do try. I am learning to adapt to new subtle and not so subtle "twinges" and burnings, quadricep heaviness, occasional knee dropping, and exhaustion.
Many of us find that we have new limitations. However, in spite of this, it's usually best to try to do as much as possible. MS is like a vicious circle, it makes it harder to do things, therefore it's easier to do less, as a result, it's even harder to do things. I've found that getting out of this vicious circle is exceedingly difficult. Thus, it's best to remain as active as you can for as long as you can.
Quote:
Question-When do you know you are having a "real" attack versus just a few days of extra leg heaviness, muscle stiffness, etc? My neuro said a "real" attack would be BIG. All these little things mess with my head Smile Any thoughts?
Some people on this site have discussed using a 4-day rule. Essentially, it's fairly common for symptoms to fluctuate somewhat. For example, I often find that physical stress will cause extra burning sensations in my leg. However, if new symptoms stick around for four or more days, then it's likely that it could be due to an attack. The 4-day rule also works in reverse, i.e., if improvements stick around longer than four days, then you can begin to consider them real and not just due to day-to-day fluctuations in the disease.
Joined: Jul 28, 2005 Posts: 1272 Location: Sydney, Australia
Posted: Tue Aug 05, 2008 4:19 am Post subject: Re: New with questions
Sky wrote:
My neuro said a "real" attack would be BIG.
Everyone is different. Some people have attacks that wipe them out so that they cant even walk. I on the other hand have relatively mild relapses as I hit them with oral prednisone before they degrade ne too far. I think your neuro was speaking a little off the cuff, and the way it is for yourself will require your own personal monitoring. For example, I only have a cold/flu as a trigger for a relapse, so I usually know beforehand and can be a little more pro-active in avoiding and treating a relapse. But that has taken 10 years to understand and gain control of.
Thanks so much for the support! It really means a lot (I'm getting a bit teary)...I am having difficulty getting adjusted to these new twinges and weaknesses. I also feel like I'm just trying to understand and get a handle on what is a relapse, etc. It is very frustrating to figure out when to call the doc, etc.
Welcome to this site! I remember when I was first diagnosed and searched for information. I found this site and one other that I found to be extremely helpful and not depressing! I think the best way to get a handle on all of this is to research and learn as much as you can. Knowledge is power! You may need to take a break once in a while - I did. Just search when you feel like it and take a break from it if it becomes overwhelming. Your life is not over by any means! Just a turn in the road that you will handle. I have found this site to have so many helpful, caring and educated people. You will also.
Lori
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