EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Posted: Mon Nov 05, 2007 3:24 pm Post subject: Hello...
No one has posted on this forum for almost a year so I'm not even sure if anyone will read this but I'm writing it for my benefit so I don't suppose an audiance is required. I'm 24. I was Diagnossed with MS in late Aug. of this year. My right hand (right hand dominent) basically fell asleep one morning and didn't wake up- for 2 months. Like almost all things untreated and ignored it progressed on its distructive course. My hand went from almost fully functioning but without feeling to a lump of play-dough on the end of a stick- I couldn't use my hand at all for almost a month and then my right leg started to become numb as well and a doctor visit was in order. I had done some research on what could be causing this and the most likly explanation was MS. I spoke to friends, family and collegues about this but any time I brought it up they would tell me about a family member of friend who had the same thing happen to them and it turned out to be a pinched nerve or something benighn. My family assured me that no one in our family had ever suffered from MS and my father almost laughed when I asked him the question.
Then there was the joy of the diagnossis or rather non-diagnosis. I didn't immediatly got to a nurologist i went to a wrist and hand specialist becuase my brain was fine (so I thought) and my hand was what was wrong. The wrist specialist sent me emidiatly to get an MRI and told me to get a family practitioner or Nuerologist to speak with. About a week went by and my MRI results were mailed to me- Through the use of 2 dictionaries, my pharmisist best friend, the internet and other resources I was able to dicifer the fact that my brain was taking on a swiss cheese appearence with "lesions with maximum vertical radi of up to 1.5 cm" (see i can even talk like them now)- So i made an appt with a nuerologist. For some reason he never really came out with it and said- 'i'm sorry but you have MS'- he used non-absolute words and side talk to discuss the fact that "from the evidence i have witnessed in your case and cases from the past" and "in my opinion"- Like if he somehow just got past the diagnosis and into the treatment I wouldn't be likly to fall off the White elephant he wouldn't acknoledge i was riding on.
A part of me died in that office. Not died in a violent way but in a slow rotting way like how most things die. I only say this becuase the next few weeks were a rollercoaster of the different psychological stages of grief. I slingshotted from deniel to depression to rage, even found myself getting into fist fights like I was back in highschool. Poor bastards had no idea the general rage and sense of injustice that powered me and never let me lose. Sigh* about all I can say now, just wanted to vent- thank of if you read this and didn't simply open up the forum, glance at how long this seemed and emidiatly click on the "back" button. I also appoligize for my spelling, I try to be an intellectual but my over-powering sense of justice also applies to Spelling and so I spell phoneticaly- Letters make certian sounds and they had no damn right to change thier sounds from one word to the next- damn dishonest letters-haha just trying to lighten the mood before signing off-
I read your entire post with interest! Welcome to this site (even though you would probably rather not have to be here!) You will find a wealth of information and support here. Feel free to post any questions or comments you have. Lots of people will listen!
Lori
Posted: Mon Nov 05, 2007 7:23 pm Post subject: Welcome AHuxley
I, too, read your entire post; many here will. We are kindred spirits.
As I have done, I recommend you start a file with copies of every test result you get. Next, start a personal MS library (I suggest you start with Multiple Sclerosis: The History of a Disease by T. Jock Murray, OC, MD.).
Read and ask questions everywhere--here at this site, at the doctor's--EVERYWHERE.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Tue Nov 06, 2007 3:37 pm Post subject: Re: Hello...
AHuxley wrote:
A part of me died in that office. Not died in a violent way but in a slow rotting way like how most things die. I only say this because the next few weeks were a roller coaster of the different psychological stages of grief. I sling shotted from denial to depression to rage, even found myself getting into fist fights like I was back in high school.
Diagnosis really is like mourning the death of a loved one isn't it? Mourning the loss of the type of life you'd assumed you would have and, in all fairness, should have had.
If there is a silver lining in this, it might involve that you weren't born and diagnosed earlier, like millions of others who lived and died with no alternative but to let the disease run it's course.
Even though there still is nothing "medically proven" to stop the disease process, there are treatments in trial which seem to and will eventually prove, or disprove, their (relative) safety and effectiveness.
I think you did the right thing coming here. At this point the disease is, or should be, the most important thing in your life, so invest some time in watching, listening and investigating and I think you'll find that your future isn't all doom and gloom.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Posted: Wed Nov 07, 2007 2:51 pm Post subject: Thank you all
Thank you for your advice and support. I know how difficult it can be to try an comfort someone who seems hopeless so thank you again. I was wondering if anyone out there had any good websites or info concerning goverment aid to finish college for people with MS. I only need about 4 more semesters for my psychology degree but i'm not sure if I want to complete that as I dropped out after my best friend killed himself (obviously wasn't very perceptive on my part) and my mother was diagnossed with stage 4 cancer. But if you know about anyone who got some financial aid or info concerning assistance i'd love to hear about it. Once again my deepest gratitude for you time and thoughts >.
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