My partner was diagnosed about 15 years ago, but has not been bad until the past year or so. Right now his feet hurt so much he can hardly walk. “Right now I don’t care if I live ’til tomorrow” is what I heard this morning.
Everything I read online is so “up” and optimistic it makes me crazy. He doesn’t trust any doctors because they don’t do anything (we’ve had really bad experiences in many areas).
I’m sorry your partner doesn’t have a doctor they trust. Is the pain something bacclofen can help for muscle spasms? I know when I am searching for support or information that sometimes I just want someone to say what I’m thinking. “I hate MS and what it’s done to my family.” It’s hard to stay positive as the caregiver but there is a burden of health that makes me say I am well so I must do by best. Some days I just want to hide. Today hasn’t been a good one. Hoping tomorrow is better.
I was diagnosed 15 years ago as well. Each month, week, even day is different for me. Sometimes I feel I cannot walk my feet hurt so bad, or my back is killing me. Some days Im sore all over and to touch me sends me into massive pain. I have not found any medication to help me feel normal, but I may have stumbled across something new. It is a muscle relaxer and some people would ask why take that? And I will tell you that I go for a massage at least once a month, though I need to go more. Im told how tight my back and neck, shoulders, and legs are. I saw one of my doctors recently who offered a muscle relaxer and I didnt think it would do anything, because I had used them before, but this one does something different–it WORKS! If Im really tense due to pain I take a half. If Im hurting and I just need to lay down for a bit I take a whole one. It definitely makes me mellow and drowsy too which works if I havent gotten much sleep. If he had one doctor, maybe his PCP? could offer this and see if it helps.
I see a neurologist. The guy is known by everyone in my local area as “the best, or one of the best”. That disturbs me because this man believes without a doubt that MS ONLY AFFECTS YOUR CENTRAL NERVOUS SYSTEM. No other symptoms you have are related!! Now, it is not rocket science to know that you didnt have this issue or that issue before MS came along. And now your list is a page long yet he still holds the phrase no, its not MS. I get how he doesnt trust doctors. There is a handful I think that if you are lucky enough to stumble on to them you will get heard, and some ideas on how to feel better. I havent found him/her yet but I havent given up either. There are days though…..some days you wish you could just not get up, not face the fact you have MS, not acknowledge that you walk different, look different, act different…sometimes its just too much to face. You just feel so bad you cant imagine getting through the day, and see no relief in sight. I get it….I really do.
Try to stay positive for you both. Keep searching for advice, for answers, for a good doc or at least someone that can bring some happiness, peace, comfort into yall’s life. FAITH has carried me a long way.