Can Someone With MS Please Comment on This?

3/3/2014

Here is a question that has come in from someone with MS. If you have experience with this and can comment, please do so!

“I have secondary progressive MS, walk with a wheeled walker, and continue to work although I feel I am losing these abilities rapidly. I have tried many other treatments for my MS (4 different disease modifying therapies, most recently Tecfidera) but none have altered my MS. My doctor is recommending a trial of Tysabri. I am JC virus antibody negative and trying to decide if I should try this medication. Is there anyone reading this with my level of disability or disease type (secondary progressive) or both who can comment on their experience with Tysabri? Studies have not been completed for this stage of the disease and I am looking to gain insight from those with progressive MS who have tried Tysabri or are still on Tysabri."

3 Comments

Sheri

3/3/2014 09:49:19 am

I'm not in your position but I did want to bring another option to your attention..LDN. Can be used for any stage of ms. Google it or look for LDN sites on FB. Many testimonies of people in your condition of improvement and halting the progression. Good Luck ((HUGS))

Carol Wells

3/6/2014 06:23:41 am

I have tried LDN and other than make me nauseated, I noticed no improvement. May give it another try, though. Thanks.

Alicia Smith

4/12/2014 12:58:03 pm

I do not have MS but my younger brother does. He started on Avonex, then Capaxone. As he continued to relapse on both he was switched to Tysabri. He lives in MN, I in MA. I am also a nurse so tried to research these medications as best I could. I had one Boston neurologist tell me he would have all his MS patients on it "if he could". At the time that gave me some confidence and I felt grateful that he was able to receive it in spite of all the releases he had to sign prior to each infusion. His Tysabri was discontinued about 6 months ago due to elevated liver enzymes and his current treatment regime is Prednisone (forget dosage) for 3 consecutive days each month!
I will refrain from expressing an opinion about this as I do not claim to be an expert on MS.
I did however experience Transverse Myelitis over 30 years ago. It is kind of the "red haired cousin" of MS as there only about 1500 cases per year. So I have been a walking SCI person whose discomforts have worsened with age. Pain and fatigue. I refuse to use narcotic medication and no amount of sleep relieves the fatigue. I am using both accupuncture and PROLOTHERAPY and both help with the pain but only temporarily. Neither is covered by my insurance but has been worth every penny! And thanks to the MS boards I too learned about LDN. I started right off at the 4.5 mg which was probably too high a dose for me. Along with the well documented insomnia, and vivid dreams when you do finally fall asleep :) I was having nasty hamstring spasms! The MS forums seemed to consistently suggest 3 mg. So that is what I am taking now. So no reduction in pain or fatigue as yet but my bladder is better than it has been in 30 years. I tried all the bladder meds from Probanthine (oldie) to Vesicare, dry mouth was the only effect. IDK how but this LDN has to be getting into, through or around that lesion or scar of mine at T6 somehow ??? There is a fair amount of info online but I found the forums most helpful.

Can Someone With MS Please Comment on This?

Leave a Reply.

Archives

Categories