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Bamboozelled
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/11/2009 1:22 AM (GMT -7)   

I’m a 43 year old married man that has a five year old son. I live in the New Orleans metro area. After eight grueling days in the hospital recently, I was diagnosed with remitting/relapsing Multiple Sclerosis.

 

I have been member of a computer technical support forum for over nine years now and have well over 15,000 post. That’s practically dating back to the stone age in computer terms. So if you have a PC problem, post it up I may be able to help. My first exposure to “the net” it wasn’t even commercial yet. You couldn’t even buy or sell anything on it, look how far the Internet has come. I also attended class at Tulane University for computers and ran service calls all over the Gulf South for over five years. But I went back to work wrenching on motorcycles, I just did not deal well with some of the politically-correct, anal-retentive, office types.

 

Just a little more back ground info, due to getting hit by a car as a child and some motorcycle accidents as a young adult, I’ve had five orthopedic surgeries, a bone graft in my neck, eighteen pieces of surgical hardware put into my body and ten taken out. I think that was God’s way of giving me little training missions for dealing with this MS. That all pales in comparison in having to learn to live with this MS.

 

Soon as my mental compass stops spinning about my recent diagnosis maybe I’ll have the time to author the book I want to do now. Just some fair warning about me, I have a dark sense of humor. I would never attack anyone here or hurt their feelings on purpose. But after what I have been through in life, can you really blame me for having such an odd sense of humor? I apologize now if I ever unknowingly hurt your feelings.

 

Enough of me, I hope I have found a second home of like-minded individuals on the net where I can share stories and do some research into MS. And maybe clown around with a bit, I could always use a good laugh.  tongue  

 

As a fledgling, unpublished writer, I could go on forever.

 

cool

 


magdaloo
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 5/11/2009 3:07 AM (GMT -7)   
rolleyes  I would like to hear from anyone who has MS and Crohns disease as well and what other terrible things will happen, as if i dont have eneough to deal with . Im 46 this year and about to retire from my job after 15years in the one position.  I have had surgery twice for my crohns and for 2 years now i have suffered on a daily basis with nerve pain predominatley in the feet legs and hips but over the last few months it has escalated into my arms and shoulders . I have vertigo as well as other drama,  some days and I can not stand at all. Looking to hear from a friend or two. By the way im also a grand mother of three. Im married with three children  and i was a child bride ..... yeah

Bamboozelled
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/11/2009 4:39 AM (GMT -7)   

I can’t tell you much about Crohns other then I think my aunt has it and she lives out of state. My mom was young too when I was born. I was born in September and she made eighteen in October of 1965.

 

As far as my MS goes, my first flare up hit me hard. I walk like a drunken monkey, I shake so much that if it wasn’t for gravity I’d spill coffee on the ceiling, my speech is slow and slurred, my eyes wiggle, my equilibrium is shot, that’s not a good thing at all for a (former) motorcycle mechanic. I have to give myself shots of Rebif also and the cost of the Rebif is astounding.

 

Don’t get me wrong, I’m not trying to say that I have MS any worse then the next person but from the amount of lesions on my brain and spine they estimate I may have been fighting this for the past five to ten years. I had nine MRI’s, three of which had contrast. The doctors estimate that I have lesions somewhere in the thousands. They said that people in my shape rarely ever get out of bed again much less walk around. I have no clue yet about all this MS stuff, I’ve only been to one neurology visit since I have been out the hospital.

 

What else can I do other then try and figure out how to live the remainder of my life with it and keep wobbling forward?

 

Nice to meet you magaloo.

 

 

tongue  


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 5/11/2009 6:27 AM (GMT -7)   

Welcome to both of you.  This is a wonderful place to talk about MS type issues.  There are lots of great folks here.  It tends to be pretty quiet but members eventually log on and say hi. 

Feel right at home to ask question, vent, or offer support.  Please take a minute to read the rules which are posted in the side bar to the right. 

Magdaloo, we do have people post that have both Crohn's and MS.  Make sure you also post on the Crohn's board.  It tends to be busier there and you might get a quicker response.  We share some similar symptoms.  I too have nerve pain in my lower legs and I have had chronic vertigo for nearly three years now.  I am less than fond of boats as I feel like I am on one constantly!!

Bamboozelled, you tell a familiar story.  Most of us figure out after our diagnosis that we have probably had this for years.  Welcome to the weird world of MS.  Good luck with the Rebif.  Are you paying the entire cost or is it that your co-pay is high?  You might want to contact Rebif; the drug companies offer many financial support programs to offset the cost. 

 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Bamboozelled
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/11/2009 1:09 PM (GMT -7)   

…..Are you paying the entire cost or is it that your co-pay is high?  You might want to contact Rebif; the drug companies offer many financial support programs to offset the cost. ….

 

No, there’s no way I could afford it, it was $1251.00 for the first twelve shots. I was given Medicaid temporarily, I have no clue what I’ll do when that expires. I realize that doctors need to get paid, drug companies need to do the research but we need to do something about that insane cost. There has to be a balance someplace.

 

I tried to contact Rebif and it proved futile at best. They wanted me to get my prescription faxed to them from the hospital and from my doctor. They wouldn’t let my wife do it from her work. The hospitals here are overwhelmed since hurricane Katrina. Charity Hospital in New Orleans is more then likely closed forever. Now everybody is shipped over to University Hospital in New Orleans.  I was born at Charity, had four surgeries there and all my records were lost in the flood. Who ever made the decision to put the records in the basement of a flood prone city needs their darn head examined for defects.

 

Also, Rebif said that I could finance the meds. Are they nuts!?!? I can’t afford to finance a new car right now, much less the cost of the meds for the rest of my life. I have not had any insurance since I lost my job at Harley Davidson of New Orleans.

 

Like I mentioned before, my mental compass is still spinning from being newly diagnosed, I have no idea which direction to go in order to get my life back to some normalcy.


I am a perfecly good bad example


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 5/11/2009 2:57 PM (GMT -7)   
It doesn't seem that unreasonable for a doctor to fax that script for you. You can't call your doctor and ask that this be done? I would try that again. I am sure Rebif is making sure there is no fraud by accepting faxed info from patients.

Good luck. There is some legislation in the works to create generic versions so these meds are more affordable. It really is awful. My copaxone is $ 2,800 a month but I do have excellent insurance. TEVA who makes copaxone has NO options for patients that can't afford and don't have insurance. Crazy.

I read somewhere that only about 55% of people diagnosed with MS, take a progression therapy. I am sure the cost is part of that reason.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Bamboozelled
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/11/2009 8:19 PM (GMT -7)   

The public hospitals down here are overwhelmed, especially since hurricane Katrina. There is no chance of getting a doctor on or around a phone. I even called the hospital social services and there was nothing they could do to assist me.  

 


I am a perfecly good bad example


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 5/12/2009 1:17 AM (GMT -7)   

What about the neurologist you have?  You should be able to contact him/her?  Also, if you have a primary care physician, he or she could re-issue the script and fax it for you.  I am sorry if I am beating a dead horse with you.  I am frustrated for you; there has to be a solution here.  I want to hear what rebif has to offer if you play their game of getting that paper-work completed.  What about applying for medicaid permenantly?  Is that a possibility? 

Well anwyay, just some thoughts there. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 5/15/2009 8:47 AM (GMT -7)   

Hi there ....Gretch.....$2800for your copaxone - holy moly - that is just crazy. Here in Canada I am paying $1460.00 per month, which when doing the conversion to American dollars, would be less than that. I heard that people in the US were paying more for the Copaxone then we are here in Canada. But that is double - yikes.  I as well have good insurance thru my work and private medical coverage. I think a grand total of 80.00 per month in premiums gets me 100 percent coverage for all medication, including the Copaxone.  So am an very lucky to have this.

Gary

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