General Medicine

» Jennifer Gerics - My Sister with MS

Everyone---

This is great! All of you guys are jumping in the discussion. Redback is a fun-loving Australian with a sharp wit who jumps into different discussions....Are you now in three? Hee hee....

Let me see....Mary: I live in good old New Jersey, land of unaffordable health insurance, real estate, and property taxes. That being said, I still love it and wouldn't live anywhere else (okay, maybe Florida when I retire.) Maybe you can find out from your sister's neurologist about starting LDN. Has she ever heard of Tysabri? This drug is supposed to be very effective in preventing progression and it treats symptoms. My neurologist has told me that it is for people who are unresponsive to the disease-modifying drugs. Progressive forms of MS seem to respond to it as well. People in wheel chairs and scooters were at a national meeting to get it approved. It has an established track record, is approved for MS, but patients must be monitored when on it. LDN seems to be hard to get prescribed at this time because it hasn't been FDA-approved yet. Doesn't mean it doesn't work, just that it hasn't been investigated for long-term use, side-effects, and its use with other drugs. Both LDN and Tysabri are worth looking into for progressive MS.

Redback: You are a ball-buster, aren't you?....Yeah, the US health insurance industry stinks. I saw "Sicko" on Sat night and was rallying in my mind. I'm ever-so-thankful to be covered (even though Bill and I pay through the nose), and I wish the US had socialized medicine. PLEASE.

Wilburn: Yippy!---you came back. Thought you might drop a note and be off again. Glad that's not so. I can see your position with MS. You've got a bad family track record. Sounds like your neurologist is not sure whether your case will be progressive. I'm quite fortunate that at this time, my MS is controlled by Betaseron, a disease-modifying drug. Not the case last year, when I was in a study up near Manhattan. It took me over a year to adjust to Betaseron. I still have side-effects some days--- headaches, fatigue. But I am 100% better than last year. I went through about 8 years with no diagnosis and no meds. Any one of us can go from RRMS to SPMS. Or we can have PPMS. It's a real crap shoot. I most likely have relapsing/remitting ms as of now.

Novantrone I believe is a chemotherapy drug. Harsh stuff. People used it for agressive MS when there were no other treatments. I think some people still use it. Scary.

As you can imagine, I have to remain fair and look at both sides of the equation. I work for a corporation, not my own website, so I have to cautiously listen, give my informed opinion, and not be too pro-this or anti-that. I get emails from folks asking me very lengthy medical questions. I'm not the doc, but I have to approach this discussion with trepidation in case some folks think I am. I have an obligation to provide people with information on all available drugs, including disease-modifying. They work for a lot of people. Thankfully I'm one of them. Avonex, Rebif, Betaseron, and Copaxone do work for some people with progressive MS. Some people would not be appropriate candidates for LDN at this time. Some people would do well on Tysabri, a drug that has been proven effective for RRMS and progressive forms of MS. It's really an individual decision. I just have to present all sides, so as not to appear radical and one-sided at this commercial website....

Long pause. Wilburn: Regardless, I am proud to know you and your rebel spirit, and I'm glad that LDN is working for you. As you have said, if what is currently available is not working for you, then what do you have to lose by starting LDN? Keep us updated with your progress. When I see my neuro in August, I'm going to get his take on it. He's brilliant--- Yale-educated and residencies in NYC. I love him and fully credit him for turning my life around--- he got me out of that dreaded study I was in last year, treated me briefly with steroids, then continued me on Betaseron. Everyone's different.

There---I've ranted far longer than I planned. Look for an upcoming article on "Sicko." I'm reviewing it this week. See ya!