I truly hope you can get back to IVIg. I can understand with the kids and your husband how you want to be able to get out and enjoy them!! We have six children. I am happy that you have knowledgeable doctors. that is a true blessing. yes, I am aware of the problems of LDN and opiates. Good thing your doctors know what they are doing.
Now remember the rules here...no one leaves!!! So please keep us posted as to your progress. We are all always here for support and sharing info.
Elaine
Thanks for asking about LDN. I have talked with my neurologist about it and the problem is that I am on opiates for a central pain syndrome and that Naltrexone is an opiate antagonist......in other words, it would interfere with my pain meds.
I have never been to Jacobs Institute, but I am really lucky to have the team of docs that I have in Minneapolis, MN. There aren't too many Immunologists (by specialty)....a lot of Allergy/Immunology doctors that simply are allergists though. I am originally from St. Paul, MN - so when I moved to WI two years ago after getting remarried, I kept my wonderful doctors that have a wealth of information and experience between them.
Severe weakness, fatigue, and pain keep me bedridden. I am up only to use the bathroom or go to the doctor. The one plus to using IVIg that makes it most attractive to me, is the bodies natural response to a healthy immune system -- ENERGY!! Which, at this point in my illness, I desire the most. I just want to live a normal life -- get out with my husband and children......not watch the world pass me by.
I'll keep you posted -- thanks for responding.
Hi. I was wondering if any doctor mentioned Low Dose Naltrexone (LDN) to you. I know there are mixed opinions about its use and was wondering if it was ever offered to you.
I am so sorry to hear that you are 90 % bedridden.
I have a cousin who takes Methotrexate for Rheumatoid Arthritis. Her biggest complaint is that it makes her susceptible to infections more frequently (bronchitis, sinus infections etc).
I saw that you live in WI. Have you been to Jacobs Neurological Institute in Buffalo NY? They treat alot of Progressive MS cases. I hope you can find some different meds to help you.
Elaine (my husband is monotreme but is not feeling well lately so I am here).
Welcome, I love your name! Wow! Quite a history with MS!
I wish I knew more to help you. The drugs you mentioned don't mean anything to me, unfortunately. I'm sorry you're frustrated at this point, and I hope your docs figure something better out for you.
I saw in your profile that you have 5 children and 3 step-children. Wow again! I saw also that you're bed-ridden. Why so? I'm sorry.
I will bump this up so others can respond as well with more info than I have.
Take care and hang in there!
Momzilla*