Unwanted advice

[rayany65]

I think I got to say the most horrible thing about this disease is the unwanted advice and lack of knowledge. I was at a fights concert and my boyfriend thought I wanted unwanted advice from someone he swears cured herself. I blasted him for it.then told him there is no cure she is in remission. Them I blasted him. I been doing fine with my ms. And to never ask someone I don't know about my disease. Was I wrong for blasting him

[rayany65]

Foghat not fights damn auto correct

[erash in reply to rayany65]

Cool I liked Foghat yrs ago...didn't know they were still around rayany65

[rayany65 in reply to erash]

Yes it was a free concert from radio station it was great

[KrittyKat60]

@Rayany65

I hear you! Nothing more annoying than having anyone give advise unless they live with it or are a medical professional that specializes in MS much less give "unwanted" and didn't ask for any advice. You go girl...!!!! 👍

[rayany65 in reply to KrittyKat60]

Thanks girl

[rjoneslaw]

@Rayany65

You are not wrong.

I hate when people do that. Just last week this lady asked me did I want to talk to her cousin because he MS and he probably could help me or give me advice. I told her I didn't need his help , I didn't want his help, and I have what I need. I told her before I ask anyone I will always talk to my dr 1st and then reach out to a forum/ community I trust like this listserv.

[rayany65 in reply to rjoneslaw]

And people wonder why we get aggravated

[Royjr]

No I don't think you were wrong just a little strong. I noticed sometimes people see other people with ms that's look like they're doing well and want to know what they're taking, eating or doing and then come back and tell you what you should do to be like that person. I tell them there's no cure for ms. Everyone's different. What work for them may not work for me.

This is just my opinion.

[rayany65]

I don't think I was too strong. I don't think anyone has right to talk about my conditions to strangers and expect me to smile and say thank you for advice

[Royjr]

I understand and agree

[Doubled51]

My granddaughter tries to tell me that if I need some to talk to her husband has ms and could help me. He's 25 years old and has no effects at all. I'm 65 and have enough for both my of us. No thank you he can't help Me or advise me thank you very much. I've learned more from the great people on this forum than anywhere except my Dr.

[SueAB]

@rayany65, My husband has been on this MS journey with me for 30 years and he probably would have done the same as your boyfriend. I know he loves me, only wants the best for me, and is always on the look out for something to help me.

[itasara]

I'm not going to comment on the best way to handle the situation, but when he said he was cured, my first reaction would be like yours that there is no cure or I would probably say that MS is different for everybody. I am sorry for the long post but it's hard for me to keep things down to a minimum and I have things I want to say. What's interesting is that my daughter came to visit for a day this week from California. She was diagnosed three years before I even had any idea that I had MS. Last year or so her doctor told her that she is doing so well and her MRIs were quite clear that it look like she hardly had MS at all. He took her off her medication. I thought that was ludicrous yet on the other hand I don't think that the total answer is in about what MS is and how and why a difference amongst different people. So her doctor told her to get an MRI every six months and continue what she's doing. Granted my daughter is much younger than I am. She's very active. She tells me she spends a lot of time in the sun and plays basketball and is basically very physically active and busy in what she does career. She tells me her attitude is very positive. She doesn't talk about MS she doesnt talk to me about it. She doesn't want to concentrate on the fact that she has some kind of condition. She's actually quite amazing! If it weren't for the fact that originally she had typical MS symptoms and some lesions, I would wonder if she had MS at all. I briefly mentioned to her about what I've read about MS working in the background but she really didn't want to hear that. She considers herself basically cured. It wouldn't do any good for me to either argue with her or get upset. I do hope that she doesn't have any problems and Her individual type of MS remains mild and may not even get worse at all. I myself have a very mild case and my neurologist says it's because the medication is working. And I have always questioned whether it's working or whether I have a mild case and I would've been the same with or without the medication. The fact is nobody really knows. In my daughters case and from what I have read I'm not convinced MRIs from what I have read is not conclusive as to one's status with MS or as to what the future will bring. She said her MRIs are fine. Since she won't talk to me about it I can only assume she has no obvious lesions or no new lesions or no active lesions. When I was diagnosed I had no active lesions either. I have not had an MRI since then -12 years ago. My doctor says he won't change anything as long as I'm doing well. So getting back to your situation, this person you mentioned may not have been in the right to give you advice and maybe he was just trying to be helpful, and he may be one of the fortunate ones who will not progress and will continue to lead a pretty normal life. I saw a couple videos online one was a nurse and one with a Doctor Who also swear they have basically cured themselves. I am still somewhat of a skeptic but as I said I don't think all the answers are in about MS and its different manifestations and approaches.

[erash]

rayany65

Sometimes the unwanted advice makes me feel guilty for contributing to my own MS

"You don't eat artificial sweeteners do you? You ate horribly as a kid! You didn't take good care of yourself..."

Mostly it's the "I'm so sorry's" that bug me when I reveal I have MS.

I tell myself they all mean well. It's hard for others to know what to say. Although you'd figure someone with MS might know better....

[Angelique67]

No you were not and I also get soooo fed up when friends and family give me advice on what I can do to get better. And I always beg them to stop using my MS as a talking point.

HOORAY for you!

[WAshingtongirl in reply to Angelique67]

I believe you are new, Angelique67 . Welcome! Please feel free to start a new post and tell us about yourself. We look forward to getting to know you better. 💕

[mrsmike]

I hear you. I just love it when someone gives you unsolicited advice. If I want it I'll ask for it. No one has to do it for me. MS may have taken my ability to get around freely, but my mouth still works fine.