Brain Demyelinating diseases OTHER than MS

I hope you get some input. I don’t have any info on your issues. Man, that’s a lot to deal with. Your frustration is understandable. What do you take for pain?

Thank you for your thoughts. For pain, I can only take Aleve (approved by my primary doctor). I cannot take anything else, due to having experienced serious side effects from a slew of medications. Heat pads are a blessing when needed. Yes, my life is quite challenging, but I figure that someone else's can be even more so.

That’s how I’m trying to cope. I’m rather overwhelmed at the moment. Trying to stay positive. You sure have a great attitude. Do you have support around you?

I'm blessed to have my hubby of 53 years💝. He does help in many ways to relieve me of taxing chores, has a great sense of humor so does make me laugh (at what our kids say are "corny dad jokes"!). He accompanies me to medical visits and waits patiently, God bless him! Our older daughter lives within our town, less than 6 minutes away, with her teen sons and husband. They provide emotional support, but lead such fully packed schedules that we don't see them often enough. We do phone chats, and the boys text with me (I love doing that). Hawken even calls me from Plattsburgh U. (where he just completed freshman year, studying graphic design) "...just wanting to know how you're doing, grandma." We can spend up to 30 minutes or so as we talk , and he fills me in about life on campus, his courses, activities, etc. He and brother Hudson are very affectionate and tell me often how much they love me. Their mom travels a great deal for her company business so we don't see each other often. But she texts during her travels, sends me photos to keep me informed, phoning on route when possible. I used to have the four of them over for dinners once in a while but over time found that I'm not up to all the extra work involved. Very draining. Our younger daughter Denise lives in Boston with daughter age 8 and son age 10, and hubby. They make trips here a few times a year, including Thanksgiving. She's in pharmaceuticals and was pre-med at Carnegie so she has so much info that she can guide me with. And I'm fortunate to also have a cousin living one town over; we sometimes have long conversations that are gratifying; we both believe in the power of prayer so we engage in mutual prayers. I'm a very private introvert so I don't confide in anyone else. I immerse myself in my writing (memoir, children and young adult), and researching online. I am a retired secondary and graduate school instructor, and it's refreshing having time to do (or not, if I so choose) whatever most appeals. There are indeed benefits to being retired.😊

Oh my! You are indeed very blessed. That sounds like a quite impressive support network. I have a large family and great friends, but most are undergoing their own crisis right now. My therapist is awesome and that really helps….And prayer. That helps the most.

Hi Delia74
I also am 75 and more than 20 years ago was misdiagnosed with MS. By recommendation from my neurologist, I went into a trial with interferon (for 5 years). During that time I would be sick from the injection 5 out of the 7 days in the week. I decided my quality of life could not deal anymore with the side effects, so I decided to discontinue the injections and changed doctor. My new neurologist indicated I did NOT have MS and approved my discontinuing medicating. This was 18 years and I do not have MS. The opinion of 2 neurologists is that my lesions were most probably from minor vascular events. I am glad that I discontinued injecting something that was not required and that, in my opinion, may have ultimately cause some harm to my system. My current health is dealing with smoldering multiple myeloma!!! 🥲

I also have demyelination I've been told .

I'm so sorry for that...when and if you get to a point where you feel comfortable sharing, I would like to learn more. For ten years all I ever heard was "...well you DO have demyelination, but so far no diagnosis....can't offer any more help." And "...such an enigma..." Demoralizing indeed.

Warmest thoughts sent your way, Red!💖🌺

Thanks for sharing💖...
I'm so hesitant about trying medications due to my history of complicated and scary side effects. I decided that there is no way that I'll do the infusion therapy with Ocrevus (which my primary neurologist was hesitant to put me on in the first place, due to my age; didn't help that he shared about another female patient my age who had been on that drug and he decided to cease the infusions since it was creating such serious quality of life issues on her). My MS Specialist neurologist (the one he sent me to for a consult) agrees with my decision, said it could mask the actual cause of my plethora of symptoms, which to her and her colleague all smack of two possibilities: genetic disorders, two of which are seriously nasty. And as with you, vascular inflammatory factors. Right now I'm waiting until end of this week (Friday Aug 9) for zoom visit with her and a member of the university's vascular rheumatology department, to present to me what I call Plan B. I've learned through research that there is such a thing as vascular inflammation causing lesion formations....and I do have vascular issues...Plan C is more invasive: brain biopsy. Not keen at all on that. Difficult to accept the parameters of such a procedure. But I've been informed that it can reveal whether my seriously demyelinated brain is dealing with a specific genetic disorder (such as leukodystropy for one) or vascular in etiology. My lesions do not follow the MS norm. ALL are symmetrical by nature. And each day, I experience another effect on my body as they continue to are form. There's more, but I'll stop here.
I agree with you (as does my neurology specialist and her team) that taking med/injections prescribed for MS can do more harm than good, and can mask the "real cause" of all our symptoms. Right now, I am going to be doing more investigation/research on behavioral health sources, because I need help with my emotional and psychological health. Too much to try to tamper down on my own, I need guidance or at the very least a professional who knows how to guide people going through my hell journey.

I am including you in my prayers that you may find peace and strength as you deal with the multiple myelomas 💝. I strongly urge that you inquire about therapy just as I'm doing, that you can have an avenue for talking about your experiences and can be offered coping tools. It's my understanding that Medicare has programs (Telehealth). Please call and inquire.🙏🏽
ALSO: a really valuable resource is a social worker affiliated with your health plan or the medical center affiliated with one of your doctors. A social worker will advise you of ALL the services to which you could well be entitled.

Hi Delia74, thank you for your recomendations and good wishes. I hope you too find the right treatment and good quality of life. I too have you in my prayers! Big hug to you!!