Anyone with MS?

[kimis]

Hi. My body has been doing some strange things in the last 3 months so I finally went to the doctor on Wednesday. He said he wasn't saying it was MS but it sure is a classic case. What is a classic case? He ordered a brain MRI which I had on Friday. So now I am waiting for some results even though from what I understand the MRI may not be conclusive. I can handle just about anything as long as I know what I am dealing with. I am 51 and never really been to the doctor for any ailments (except to have babies).
My problem is this--my husband of 33 years. He is saying and acting as though I were faking the whole things. I don't blame him for not understanding why my hands and face go numb for a few minutes, or my legs feel like I am walking through the ocean of water, or my vision blurres on the sides, and there was one night in bed when I couldn't pick up my arms. That was the symptom that sent me to the doctor. I don't understand it either. However he knows I don't fake things and the things he is saying is very hurtful. At one point he actually said that I shouldn't say anything just live with the symptoms and go on with life.
I guess my questions are these:
Do you have MS?
What symptoms did you have?
How and when were you diagnosed?
What about your family members?
I would appreciate any and all help. Thank you so much. The only info I have so far is what I found on the internet .

 

[mommasita]

Hi there.

Although I don't have MS, I felt compelled to share something with you. My husband has a hard time understanding my troubles as well. I have some severe, but not visible auto-immune disorders, and it is so difficult on him, as well as myself.

We really have opened up the lines of communication lately, and it is helping. He tells me how hard it is for him, as there is nothing he feels he can do to help me. If he saw me bleeding or bruised, he feels he could do more to make it feel better. With something only "we" feel, it is hard on others.

I am not saying your husband is the same, but men (generally) do have a harder time expressing their emotions, and it certainly does not make it easier.

I will keep you in my prayers. Update when you can, and if you want to share. I am a PM away, if you need to talk more.

 

[Dakota_Lynn]

Hey there, I’m so sorry to hear of your difficulties. I know it can be tough. Like Mommasita, I do not have MS (though my doctor’s thought I may for a while), but I have many other autoimmune diseases, so I can relate to much of what you are going through.

When you are young (and 51 is young!) and you suddenly find yourself bombarded with health issues, it is scary. Most of us realize we could get sick someday, but we rarely imagine it could happen at our ages. It is healthy to deal with fear and confusion by talking about it. Talking about what is happening and getting validation from people close to you is important to learning to cope with your illness. I hope your husband comes around and realizes this soon, but if he does not, PLEASE find other people you can talk to. If nothing else, find a support group or come here and talk.

My family is very supportive of my illness, and I thank God for them every day of my life. I know how helpless they feel at times, but they try so hard to be supportive. However, I have a couple of friends who I believe either doesn’t believe I’m really *that* sick, or they don’t believe I’m sick at all. One of them in particular is a very insecure young woman who just had a baby. I know she needs friends right now, but oftentimes I’m just too unwell to hang out with her. She takes it so darned personally, like rejection, and that puts so much stress on me. I don’t look sick enough for her to believe that I really can’t entertain her all day like I used to.

Sometimes people choose to deny that their loved ones are sick because they don’t want to face the truth. I think maybe your husband doesn’t want you to talk about it because he doesn’t want to believe that somebody he has loved and shared his life with for 33 years may have an incapacitating illness! Imagine how scary that is to him! I believe that your husband, like Mommasita’s, will come around eventually. I’m sure he loves you and is just very overwhelmed. Once you get a firm diagnosis, whether it is MS or some other autoimmune disease, he will read the literature and learn a little about it. He’ll realize that you won’t die, but that there will be a lot of challenges and he’ll learn to swallow this a little bit at a time. I really believe he will come around for you! Until then, come here and vent and talk and ask questions. Lord knows, people going through AI disease needs all the support and friendship they can get!

 

[harmonium]

My father was diagnosed with MS when I was about 10. A very dear friend of mine, around the same age as my father, also has MS. My father's health has been on a decline over the past few years where my friend has seen increased mobility and thirst for life. My father has never been a very active person and maybe that has contributed to his decline in health over the past 3 years, but I also blame the disease along with the amount of drugs my father allows the doctors to pump into him. My friend, who is like an honorary mother to me, goes fly fishing, and takes brief hiking trips and through a postitive state of mind has overcome her mobility issues. She has not used a cane for several years now.
I was young when my father started showing signs of MS and my family kept me in the dark for most of it. I remember visiting him once when he was temporarily blind, but that is the only real memory of his time in the hospital that I can recall. It was pretty scary, but my dad has always had a good sense of humor that helped to lighten the mood.

My only advice that I can give is to get second and third opinions from different doctors. Try to find a way that your husband can relate to how you are feeling. And above all, keep your spirits high as possible.

 

[MAO.VOLUNTEER]

My daughter and I have been the moderators of a Yahoo group called About-MS since 1999 ... come visit us sometime!

 

[tomboy_m]

I have MS. First let me reassure you that you will be OK. I try to look at it like this. Anyone can become disabled at any time. MS is just a reminder that it might happen to me. I do not focus on the problems it causes but try to see it as a reminder that life is short and my health is very important right now. I no longer wait when there is something that I really want to say or do. I know that I could wake up unable to walk one morning.... today however I can and I will. I find myself doing the things I love more frequently and stressing about the little things far less... stress makes my MS worse.

As for your husband... lots of people think people with MS are faking the symptoms... they just don't get that one minute it everything can be ok and another it is not. They can't see or feel the weird things our nerves are doing. Your husband is probably in a great deal of denial... my partner lives in denial of the disease.. she says it is just too painful to think about what it might do to our lives and that she can't control it so she pretends its not there.

I was diagnosed about 3 years ago and have not had much progression... I like to believe my positive outlook helps. feel free to PM me if you want to talk.

Good Luck.