This Is MS Multiple Sclerosis Knowledge & Support Community

I don't have anything to back up my theory that MS is inherited, or at least that an individual can inherit a predisposition to it, except for the fact that in my family, of the five materal granddaughters, three have had cancer (one died due to the cancer) and two have had MS (one also has died, I'...

VickiG, I have not experience parathesias or dysthesias. I have had PPMS for 16 years. I am still ambulatory but do use a cane and AFO. About 10 years ago, my neuro prescribed 4-AP. I, too, did not like the way it made me feel tingly inside, so I quit taking it. It was about a year ago that I ask my...

This drug was prescribed by my neurologist who is head of the Maxine Messinger Multiple Sclerosis Clinic at Baylor College of Medicine here in Houston, Texas. I am not part of a clinical trial. I fully understand the importance of potassium in your body and did not know it was affected by this drug....

Anyone know of any long-term side effects from 4-AP? Does the body eventually build up a tolerance to it so it's not as effective. I have been taking one tablet/day (can take up to three) for about a year. Just recently took two and found that my stamina improved significantly. (Haven't tried the th...

I know this doesn't answer your question directly, but have you considered changing to Copaxone if the interferon drugs are not compatible with LDN? I have been on Copaxone since 4/98. My neurologist is head of the Maxine Messinger Multiple Sclerosis Clinic in Houston, Texas. He had no hesitation pr...

I have been on 4.5mg of LDN since June 3rd. Before beginning LDN, I slept eight to nine hours a night. Now, I sleep approximately six hours a night. Once I awaken, I can't go back to sleep. I'm not really any more tired than I was with eight to nine hours of sleep. I am just curious if anyone else h...

Lynn, please be proactive with your doctor about your disease. Don't take everything he says as the gospel truth. This disease has no answers. He needs to consult with you about your thoughts on the treatments he prescribes, and together you both determine your protocol. Copaxone is not to treat sym...

As I mentioned in my original post, I have done an exhaustive search for high-risk LTC insurance and certainly understand the business of "insurance." No one should depend on Medicare for any "long-term care" help beyond 20 days in a skilled nursing facility. According to THE MED...

As I mentioned in my original post, I have done an exhaustive search for high-risk LTC insurance and certainly understand the business of "insurance." No one should depend on Medicare for any "long-term care" help beyond 20 days in a skilled nursing facility. According to THE MED...

Okay, this is going to sound a bit hostile, but why on earth does every old, and not so old, person that can walk have a handicap parking permit? I am 56 years old with PPMS. I use a cane and have an AFO. When I park in handicap parking, with a valid permit, it never fails that some old person give ...

Though I am still ambulatory, I do have PPMS and cannot ignore what the future might hold. I have done an exhaustive search, on my own and with a Long-Term Care Insurance Agent, and cannot find LTC insurance for people with MS. Has anyone been able to locate a company that offers what is called &quo...

Are you on LDN? Yes How long? Three weeks How many mg's? 4.5mg When do you take it? Around 9pm What kind of MS do you have (rrms, spms, ppms)? PPMS Positive changes since/while taking LDN? Better bladder control, less constipation and less fatigue Negative changes since/while taking LDN? None Any re...

My immediate response to LDN was better bladder control and less constipation. I do take Detrol XL, but the improvement in bladder control is even better with the LDN. Since it is summer, I haven't really paid attention to my hands and feet being warmer.

I have been on Copaxone sine 4/98 and have just started LDN. since Copaxone is an artificial protein and LDN is an opiate blocker, there shouldn't be any problem. My neuro prescribed the LDN and knows my history with Copaxone.

Dr. Victor Rivera
Baylor College of Medicine
Houston, Texas
713-798-7707