General Medicine

» Wilburn - My Sister with MS

Mary....Jennifer.....I'M here!!!

Sorry...

Sometimes it is difficult to find time for myself. I have a couple of little ones. Mary I am 26. Was diagnosed with MS last year and unfortunatley am no stranger to this disease.
My father died when he was 39 with progressive MS. He had taken a drug called navantron(Spelling?) which lead to leukemia several years later. I too know what it is like to love someone with Progressive MS. You feel helpless. I am glad to hear that your sister is in higher spirits latley. Hopefully this will continue.
LDN was prescribed to me by my General Practitoner. I spoke to my Nero about scripting LDN to me and she was unable due to hospital policies about "FDA approval". BUT.....she did not discourage me to see a GP. After some research from my GP, he gladly scripted this med to me saying that he could find NO harm in it.
I feel like everyone who has MS has to go through the "disease modifying" drugs before they decide to take matters into their own hands. Fortunatley for me, my father taught me to be open minded about this disease. (If he hadn't I think I would have been crazy by now) All disease modifying drugs at this time are for RRMS patients. Everyone in my family(my Father, Great Aunt and Maternal Grandfather) died with Progressive MS. I too am showing signs of Progressive MS and felt that it would be foolish to waste my time with the drugs avalible at this time. I was also unwilling to give away my precious time to Rebif (another disease modifying drug) for my children. I felt so terrible on Rebif that I could not pick up my son. I chose to take a chance with destiny and play with my kids while I still had the chance. Then I found LDN and I am thankful.
LDN has the same concept as the disease modifying drugs on the market now. It is supposed to stop the progression of MS. In some cases, It has actually helped patients regain control of things they have lost. (ie: Leg movement, clearing vision, etc.) For me personally, I have little to no fatigue, spasms have faded significantly, and I feel a lot stronger than I have in months. LDN is my disease modifying drug. I thought I read somewhere that it doesn't mesh well with Avonex, Rebif, Copaxone, etc. I'm no doctor, but I feel great! And I am glad that I made the choice that I did.
OH.....and by the way, I know all about health insurance! My husband and I own a small independant insurance agency and also provide insurance to ourselves. My Rebif was $100 a shot ie: $1200 a month(at cost) Lucky we have a $50 copay. BUT....as you know, LDN is generic. It was cheaper for me to buy it right out of pocket costing me $12.50 for a monthly supply including the compounding fee. Pretty amazing huh? And now you wonder why the FDA won't approve? Because thier good ole friends the pharmacutical companies would stand to loose a little bit of money....? Who knows? WHO CARES???? I FEEL LIKE A MILLION BUCKS!!!!!!!!! YEAH!

Talk to you all very soon.

With love from OHIO

Wilburn

-- posted by Wilburn