ed-tobias
Forum Replies Created
-
ATA188 is a particularly interesting experimental medication because it targets Epstein-Barr virus cells, long suspected of having a link to MS. It raises the question of whether a cure for MS will really be found if and when a cure is found for EBV.
Ed
-
Karla,
One last thought. If you think the problem is with the insurance side, rather than with CVS/Caremark, you might want to contact your state’s insurance commission and explain the problem to them. Most insurance companies react to pressure from their state regulators.
Ed
-
Hi Karla,
I’m sorry for all of the problems your and boyfriend are having with the co-pay. Have you asked the insurance company to place a conference call to the pharmacy, with you on the call, to try to straighten things out verbally? Or, you might try asking the insurance company to send you an email stating that the co-pay is only $30. Have you tried asking to speak with a supervisor at the pharmacy to explain the problem. Finally, you might try Biogen’s customer service people again and see if they could help mediate between the pharmacy and the insurance folks.
Good luck and please let us know how it goes.
Ed
-
Thanks for sharing your info, Susan. I also feel it’s given me more control.
BTW, nice updated picture.
Ed
-
Jilly – Been there, done that…or something similar. I think most of us have. Glad you’re ok.
-
Jilly – I also have no idea how that happened! It just does.
-
Hi Randy,
I’m very glad you posted this because I’ve been considering this procedure. Was this same-day surgery? How quickly did it work? Do you need to self-cath and, if so, how difficult is that.
Thanks,
Ed
-
Hi Jilly,
Talk about warp-speed….I turned 73 about 10 days ago. Ha!
-
Hi Josh,
I’m sorry about your problems. I’m a 73 year old who has lived with MS for over 40 years and has been married for 45. I don’t think that I get exceptionally moody but I’ve read of others with MS who do. They seem to get angry and, apparently, this can go on for days. This is just second-hand info, however. Maybe someone else here has experienced this him or herself.
This info from the National MS Society website may help you understand this better: https://www.nationalmssociety.org/Living-Well-With-MS/Emotional-Well-Being/Mood-Changes
Good luck,
Ed (MS forums co-moderator)
-
I love spending time in the pool, John, both walking and swimming. I hope you’ll be able to continue your splashing.
-
Hi Yvonne –
Here’s a link to something I wrote about the shingles vaccine a few years ago. I hope it helps with your decision but it’s best to talk about this with your neuro. He or she, obviously, knows more about you medically than I do.
Ed
-
Baseball always helps me!
-
I agree that this one is worth reading, John. I even mentioned it in my weekly MS News That Caught My Eye Last Week column a week ago. 🙂
-
I think my head was clearer in college when I wasn’t smoking…but who can remember? :-). It does make sense, however. Did we need a study to confirm this?
-
Hi CG,
For someone new to posting you’ve done it quite well.
I’m sorry about all of your problems, especially the pain. Are you using any medications to try to handle your symptoms? Are you using any DMTs to try to try to reduce our lesions? What about exercise or P.T.?
I guess after twenty years you’ve probably tried them all but I gotta ask. :-).
Ed
-
Hi Marian,
I can’t find the “low to severe” reference that you saw, but you can find full details about this trial on the BEAT-MS website: http://www.beat-ms.org/
Ed
-
Am I unusual? In my 40 years living with MS I can count the number of times on one hand that someone has told me “I know how you feel” or “my friend with MS is doing much better than you.” Toxic positivity hasn’t really been an issue for me. Has anyone else had my experience?
Ed
-
You’re unforgettable, Jilly! :-).
That’s great news about the MS forums being added to the New Zealand MS Society’s website. Spread the word. Keep the conversation going.
Ed
-
Hi Mina,
I was treated with Aubagio for a couple of years. I had no side effects, though I’ve heard complaints from some people who have lost some hair.
I understand how you feel about Copaxone. Avonex was my first DMT – 1996 to 2008 – and my needle fatigue became so bad that I had to ask my wife to jab me. Finally, I started skipping doses. I knew I had to change.
Ed
-
Hi Jilly,
Good to hear from you again. It’s been a while since you’ve posted. How have you been?
Ed
-
Hello all,
It’s been a busy and stressful week for me. I’m changing my legal residence from Maryland to Florida and when I went to change my driver’s license they made me take a driving test. At age 72!! Keep an eye out for my MS Wire column this Friday in which I tell that tale.
I love trying to help people, both able bodied and us MS “gimps,” understand more about our illness. I’m amazed at the lack of knowledge out there – even on the part of some neurologists – so I’ve written my column here for almost 5 years and have also written a book: “We’re Not Drunk, We Have MS.”
I follow the belief that, rather than hiding from the storm it’s better to learn to dance in the rain. I hope you all do the same.
Ed
-
Hi Stephen,
I’m really sorry that happened to you. Do you have a regular physician or neurologist who sees you? If so, I’d suggest mentioning it to the doc and seeing if he or she can go to bat for you.
Ed
-
Thanks for sharing, Shelley. You’re right, asking is definitely harder than accepting. Ed
-
Hi Lola,
I’m so sorry you’ve had such a hard time of it. I have a couple of responses to “how are you doing?”. They include: “I’m slow but I usually get where I’m going” and “Holding my own.” I have to admit that I sometimes just say “Doin’ ok, thanks” and shuffle on.
Ed