Family who refuse to accept you have MS and demand you do what they want

[rjoneslaw]

My mother didn't find out until Feb 2016 that I had MS. If I had my way she would never had known. It would've never been discovered if I hadn't had a relapse. She found out when I went to get an AFO, the guy asked what my diagnosis was in front of her. I was diagnosis 7/2013. From 2013 to present I was seeing a neuro every 6 months and yes she would drive me to my appointments. She was even in the room when had my spinal tap.

Once she found out I had MS, she would demand that she go into my appointments with me but I would never let her. For some crazy reason I said ok. When she went in to meet my neuro she didn't get what she wanted because the neuro wouldn't agree with her, so from there she made up her mind she didn't like her.

Having gone and seen 3 neuros on my own prior to choosing my current dr in 2013. She wanted me to go to the Mayo clinic because they are supposed to be the best in everything.

Fast forward when I went to the Mayo clinic the dr decided he wanted to take cheap shots at my Neuro and say they weren't real doctors and didn't know what they were doing. It was bad enough that he allowed my family to control the visit and heard nothing I said even though I'm the person with MS. Instead of admitting he was wrong in his final report he stated I should continue what I was doing.

So from there my mother every chance she got demanded that I change my dr. That was not going to happen and it has not happened.

Yesterday she was demanding I go see a dr she made an appointment for me to see. I told he I wasn't going. You can image the argument. She was on the losing end . My sister and my mother friend asked me to go just so the argument would end.

I controlled this appointment talked to the neuro and as I was letting him know who my neuro was he was like your Neuro is famous. They have made medical break through and a lot of MS drug trials are because of them and they are behind the development of several MS drugs. I do know a dr at from UW- Madison developed Ampyra

After allowing the neuro to talk to my mother she was trying to get him to say that I wasn't being seen by the right neuro and that the Mayo dr was right. Her bubble was busted. The neuro told her I was with one of the best and they were world renown in the medical world. That they were behind some of the most successful clinical trials and the development of MS drugs. The neuro also told her that a couple of his patients went to the Mayo clinic and was given the wrong diagnosis or a really vague diagnosis.

I have to admit I didn't know my doctor was famous nor did she advertise it. I did know that a couple of doctors at UW- Madison developed several MS drugs. One that I know for sure is Ampyra

I have won the battle.

[jimeka]

rjoneslaw mothers! What can I say! My mother couldn't handle my diagnosis so the only way she felt comfortable was to speak to me on the phone. I think she thought if she couldn't see the problem then all was well. Maybe it's her way of handling things, having been in control of you whilst growing up, she probably feels helpless. I am pleased that she now understands that you are in good hands and you are being treated by the best. Blessings Jimeka 🦋 🌈

[Sggmcswain]

My mother is being the opposite. She is staying all in my "stuff". The best way I know how to say, I would say she is feeling guilty. Her mother had it but was undiagnosed. Looking back, she had all the " issues " and more. But...

[rjoneslaw in reply to Sggmcswain]

@Tutu , @bxrmom , @Sggmcswain , @mrsmike @Iona60 , @jimeka

I am 47. I won that battle yes. During the visit she asked the dr about supplements particularly turmeric he said sure if I had inflammation , the dr stressed more vegs and protein. So now she has decided to demand that I have inflammation which I don’t and I need to take that.

My mother thinks she is supposed to control you no matter who you are or age. If she feels she can’t control you to think like her she will bully you, or try to manipulate you into thinking her way, or try to use religion to bring you to her side.

Well as a child I quickly learned what was going on and rebelled at every opportunity I got. I knew what to tell her and what to withhold. When she would get mad and realize she had info she that could use against you she would try to use it to hurt you. so she could win an argument. I am completely immune to her ways and she hates it with a passion.

[Hidden in reply to rjoneslaw]

I uh actually have tried tumeric, sometime just put a little bit teeny tiny in a glass a water and drink it. I have mass inflammation with the MS and fibromyalgia etc etc and if my tounge swells sometimes. It does really help. You can get it in a pill to. But it's not meant to replace anything.

[CalfeeChick CommunityAmbassador in reply to Hidden]

You can get tumeric in capsules in the vitamin sections. I’ve taken it and also ginger root for my arthritis inflammation for years.

[rjoneslaw in reply to CalfeeChick]

@CalfeeChick @CalfeeChick

I’m on an immune suppressant because I have are form of rheumatoid arthritis called Still Disease, which is the adult form of JRA (juvenile rheumatoid arthritis). I take Hydroxychloroquine x2 day. So I have to be careful of what I take. I don’t have any inflammation.

[kdali in reply to rjoneslaw]

I have an orange juice that has turmeric in it, when I remember to buy it. I drink amla powder for antioxidants and hibiscus tea. I like all of those things in the first place, so it's an added bonus that they fight inflammation. Eating cabbage does the same thing. It does not replace my medication.

Can we laugh about how ridiculous this diagnosis and prescription from Dr Mom is?

[rjoneslaw in reply to kdali]

@kdali

I will try the orange juice I drink it every morning anyway. How much do you put in your juice? How often do you drink it with in a day?

[kdali in reply to rjoneslaw]

It comes that way already! I buy it at Kroger (Ralph's) or Whole Foods, it's called Uncle Matts. If you decide to get into it and juice the raw stuff, they make a little peeler thing that keeps your fingers from being stained orange, I think it's suppose to be for garlic.

Just once a day, when I remember to buy it.

[rjoneslaw in reply to kdali]

@kdali

Thanks

[Iona60]

rjoneslaw Good for you! I'm wondering how old you are. It seems like your mother isn't viewing you as the adult that you are. I was diagnosed by the ER neuros at the Mayo Clinic in Jacksonville, and was put under the care of the neuro that specialized in MS. She was the rudest, most uncaring physician that I ever encounterd. I quickly left Mayo and found another MS specialist in the area. He is wonderful and it was the best MS decision that I have ever made. I'm glad that you were able to be persistent and found the best neuro for you (not your mother).

[Sggmcswain in reply to Iona60]

I am old enough - 48. Diagnosed in 2008

[mrsmike]

Glad you stood your ground. Good for you!

[Sggmcswain]

I am 48, yes old enough...

[WAshingtongirl]

I'm saddened to hear about the war that has been waged against you, rjoneslaw . As if MS isn't enough... But I am happy to hear you won this battle. I hope that puts everything to rest now. It's your life. You should be in control of it, even if you need the help of others. Praying it is easier from here on out. 💕

[bxrmom]

rjoneslaw I'm sorry that it took for you to see the last neuro to get it across to your mom that you do in fact have MS and that you have one of the best ones at that! My grandmother was similar to your mom...wanted me to file for disability right away after my diagnosis. Um, no!! She never wanted to talk about it, most likely she didn't understand it. She didn't want to tell me things because 'it would stress me out and she knew stress was bad for me'. Told her not telling me things made it even worse.

Family can be stressful, that is for sure!

Jessie

[mrsmike9 in reply to bxrmom]

"Mom" should be told that stress is bad for MS. It sure is for me!

[rjoneslaw in reply to mrsmike9]

@mrsmike9buffering

You would think she would care about stressing me out but that is not the case.

[Bygonelines]

rjoneslaw I am sorry your mother has given you so much trouble. I got really lucky in that my mother and a couple of other familymembers were diagnosed with MS before I was so everyone was supportive but they all thought they knew best and had trouble acceptiong that what works for one doesn't work for all. The family that doesn't have MS just get so confused why we all have to be on diferent treatments for the same disease.

[ssdw1958]

YEAH good for you I don’t mean to say anything against your mother BUT I am glad you went to that doctor so he could say all the right things.

Maybe you shouldn’t bring mom in when you have an appointment just have her bring you but let her know she can’t come in with you.

Good luck!!

[rjoneslaw in reply to ssdw1958]

@ssdw1958

I never let her go in with me. I just let her go in to my main dr once cuz I wanted to prove her wrong which I did. She wanted her to agree with her and she didn't.

The Mayo clinic in Minneapolis that dr had them come in not me. To be honest I don't think he understands the concept of dr/ patient.

The last dr she only went in after I talked to him and he asked me if I wanted him to talk to her so she would stop searching for someone to agree with her.

[ssdw1958 in reply to rjoneslaw]

I am so glad that is over with for you. I just thought could it have been that your mom wanted a doctor to say you don’t have MS, because your parents haven’t come to terms that there child you has it. (MS)

I remember saying too my sister that I’m glad that mom and dad are not around anymore so they don’t have to see me going through this. She was shocked to hear me say that but once she thought about it, she silently agreed.

Just something to think about.

[rjoneslaw in reply to ssdw1958]

@ssdw1958

My mother and sister did go through a period of saying I didn't have ms and that it was everything else. The Mayo clinic put that denial to rest. Then it became I know what treatment you should do. I read this book and this lady did this or the MS society website said this and you should do it.

[CalfeeChick CommunityAmbassador in reply to rjoneslaw]

I have instructed my personal doc and the MS Clinic to not give out any of my information to anyone without my permission and named both of my daughters specifically!

[kdali]

Yikes! ☹️ Your family must have missed the part about added stress causing relapses. 🙄 Yay for the win and how awesome is it that you are being cared for by the royalty of medicine!?! 🎉😁😍

[rjoneslaw in reply to kdali]

@kdali

You would think my family would not stress me out but I don't think they really care. Like I said in a prior post they like to bully you into thinking their way but I'm immune to it.

[BigMar7]

As I was reading your post I was thinking of my mom, who thankfully passed away long before I was diagnosed. I think she might have reacted like your mom. I'm happy you won the fight. 😀❤️

[mrsmike9]

Wow! You really have had quite the battle! I'm glad you're at the end and it turned out in your favor. I'm sorry to say that your mom is quite the controlling one, isn't she.

[rjoneslaw in reply to mrsmike9]

@mrsmike9buffering

You have no idea.

[mrsmike9 in reply to rjoneslaw]

I'm so sorry. I can't decide which is worse, controlling family or uncaring one? Mine is the latter. My sisters couldn't care less, my dad died in 2002 and my mom is 95 and doesn't know who I am. To bad there's not people who are somewhere in the middle.

[CalfeeChick CommunityAmbassador]

I’m just gonna throw in my 2 cents here. As a mom and Nana to 8, I have never been what you think of when you think of 68-70 yrs old. As many of you know, I was very active, athletic person bicycling up to 200 miles a week, swimming laps and walking a couple of miles after dinner most evenings. That was until MS truck hit me last year! My daughters, ages 51 & 42, both medical professionals, well one thinks I have Alzheimer’s and the other wants to stick her head in the ground and calls it “my neurological problem!” When the older girl visited last summer, she verbally abused me and twice threatened to kick me out of the car. I was in bed for 4 days after with exasperated symptoms and cracked a tooth in half from tooth grinding. I have had to make a very tough decision that she did commit “Elder Abuse,” and is Toxic to me. I will no longer have contact with her at all. Amazingly, once I made that decision I have felt peaceful. I have to protect myself! We all need to protect ourselves from outside stresses and make tough decisions about our own care. I want to make whatever time I have left on this earth the best I can. Probably more than 2cents worth.

[Nom_De_Plume in reply to CalfeeChick]

CalfeeChick I am so sorry to hear that. That must have been very difficult for you. It amazes me how insensitive some people can be.

[Nom_De_Plume]

rjoneslaw

I am so glad that you have become immune to the manipulation. I'm sorry that you ever had to learn how, but it sounds like you have been successful in getting there.

I think that one of the most difficult of the many "adjustments" we make while having MS, are the social ones. In your situation, I'm sure your Mom was like this before, but, in general, the way our family and friends, coworkers, strangers, etc. react to the disease can be so difficult. We've posted about this before, but I think it can be heartbreaking and unexpected. We aren't prepared for it because we're so busy coping with the MS itself, but I think it would be good to help prepare the newly diagnosed for this challenge. It takes many shapes and forms, and is more or less stressful for each of us depending on our circumstances, but it is not spoken about and people just fend for themselves as it comes up.

[CalfeeChick CommunityAmbassador in reply to Nom_De_Plume]

Well said and so true👍🙏💞

[CalfeeChick CommunityAmbassador in reply to Nom_De_Plume]

Thankfully my parents are in heaven and don't have to figure this MS out. I went numb at the end of June 2016. DX last December. I honestly believe that I definitely waiver between denial and acceptance. Maybe that has to do with what time of day I think about my feelings. Right now my brain is racing because I'm trying to prepare for my 8:30AM appointment in SF. Still have to bathe, try to sleep and get up at 3:00AM to be ahead of commute traffic.. Gotta go, will try to post something probably Wednesday. Blessings, Lynn

[Nom_De_Plume in reply to CalfeeChick]

CalfeeChick

“Between acceptance and denial” only a year and change after diagnosis? I’d say you’re doing pretty well with this!

Honestly, I think our minds need some amount of denial, at first any way, as a defense mechanism, while “easing into” the reality of our new life with MS. IMHO anyway.

[rjoneslaw in reply to Nom_De_Plume]

@Nom_De_Plume

When I was diagnosed with stills there was no issues. I was in the hospital for 14 days. She never did what she has done the MS. I believe because it's not invisible it's no need to tell or talk about it. That was wrong than the MS remission.

She has thing my friends do this, my friends have this relationship. Well we don't have at relationship where I tell her anything or we hang out out like best friends because if I do tell her something or she finds out something, she has either ran and told her friends using the excuse I needed prayer, god placed it on heart.

Don't forget I told how she would try to use it hurt me if we got into argument to win. So she knows nothing.

Here is an example when I was taking the bar exam I told her not to let anyone. The next thing I know she had told several people telingl me she needed prayer.

Or with the MS I told her not to say anything because it's not anyone's business and I didn't what to hear I know someone who have MS do you want to talk to them. The only thing she had to tell them she had a severe muscle spasm and she has muscle weakness.

[Nom_De_Plume in reply to rjoneslaw]

@rjoneslaw

I understand what you’re saying. You learn what you can and cannot share. It is unfortunate that this dynamic is necessary. It’s especially difficult when it’s your parent(s). It’s natural to want to be loved and protected by them, but sometimes they’re not capable of that. You do the best you can with what you’ve got. Seems like you’ve adapted well? (Do you think so?) Kudos to you. Still, I’m sorry it couldn’t have been a different relationship for you from the start. Especially since you have MS now and could really use some support. Having MS seems to make strained relationships all the more disappointing.

Sorry I don’t have anything uplifting to say! Lol. For me, my faith is everything. I don’t know what your leanings are. It is at the core of how I cope with MS and everything else!

Wishing you peace in your heart. 😊🕊

[Donna_uno]

Keep up the fight, that’s how the battle is won!

You have a great support group here.

[CalfeeChick CommunityAmbassador in reply to Donna_uno]

To you & Nom_De_Plume, absolutely!! Not sure what I would have done without my MSAA family! This forum has been a lifesaver almost literally. I am blessed with al of you and my husband and my 20# kitty 😻 laying across my lap. Just had a very awesome Dr appointment, but I need a nap 😴 we left Home at 3:00AM and just got home. I will post details of appt after I rest a little. 😴😴 Lynn

[rjoneslaw in reply to Donna_uno]

@Donna_uno

Like I told CalfeeChick

I agree I'm not sure what I would have done without my MSAA family! This forum has been a lifesaver almost literally. I can reach out about what is going on to people who understand.

[rjoneslaw]

@CalfeeChick

I agree I'm not sure what I would have done without my MSAA family! This forum has been a lifesaver almost literally. I can reach out about what is going on to people who understand.

[ssdw1958]

I know I’ve committed on this before but I love this last doctors response to your mother I wish I was a fly on the wall to see her expression. 😳😳😵👀👀😳