This Is MS Multiple Sclerosis Community: Knowledge & Support

I am new to the board and MS (diagnosed 11/16/06 within 2wks of my 1st symptom), my question is who do you tell you have MS and when. I have made some logical judgement calls (Immediate family.In-laws, anyone who may have to take care of my son (2 1/2) - Daycare, emergency pick up people, all of my physicians), but am unsure from there. A cousin of mine has MS. He is a second cousin on my mother's side, and is I would guess 20 years older than me. He definitely has a progressive form. His speach and mobility have definitely been affected. I don't know that my extended family has the where-with-all to do any research to understand there are different types ( I had no idea before I was diagnosed), and I fear the pity stares etc.... Explaining could be more troucble than it is worth.

Any comments or suggestions would be fully welcomed!

Hello,

Disclosure can sometimes be tricky. Who to tell, who not to tell. In my case I only had to tell a few close family members and then gossip took care of telling the rest of the family. They did not know what to say to me about it, it was awkward. I personally have taken the approach that I don't tell people unless I have to. When I worked a couple of years ago I didn't tell my co-workers or my supervisor. I don't want people knowing me as MS instead of me. I think carefully about how telling who I do tell that I have MS will affect me. It is a personal decision on whether to tell people or not.

Alicia

I tell anyone who I think needs to know, but I keep it on the QT as much as possible at work. There are so many people who are clueless about it that I think it would be more of a problem than anything at work. I've been at my job for a while and they all pretty much know now, but they tend to forget if it's not talked about. As far as family goes, all my family knows and I think it's best for me because I've always had to talk about the elephant in the corner.

My daughter owned the most successful dance school in a small town. She is honest to a fault and shared with her students and her parents. She lost over half of her students, including her neurologists' 2 children! (I guess I should say her "former" neuro! She was completely devastated with the loss of so many students she loved. It was probably one of the most painful experiences she has had with this disease.)

The next year, she got the word out that the diagnosis had been incorrect and she tells NO ONE. Her school is beginning to gain new students.

For the most part, folks will not understand. I would urge your family members to read about this disease. There are so many misconceptions. They only see "physical" symptoms; they do not understand the mental symptoms of not only the disease, but living with it.

I will keep you in my prayers.

P.S. I would also investigate Chronic Lyme Disease (known as the Great Imposter.) One word: There is NO definitive test for CLD. There are 2 tests that will pretty accurately diagnose Lyme Disease in the initial stage (first 6 weeks) before it leaves the blood stream. After that, the diagnosis is the exact same as MS: clinical.

You might want to research those symptoms. They can be identical to MS; however, they can also include the muscles and joints as well as the CNS.

Again, good luck!!

Hi there Kemond. I agree with Loobie on this one.
I've had MS for over 20 years and it was v mild for most of that time and is now apart from slight balance issues and a limp when walking significant distances. I have the advantage of saying "look I've had it this long and I'm not particularly incapacitated" and people have to agree which helps a lot. I know I am fortunate in that respect. I personally don't feel you need to tell everyone. You are probably still trying to come to terms with the dx yourself and don't need the strain of supporting or educating others at this time.
On the work front I have read of others suffering discrimination when they reveal the dx eg. not being allowed to be in the office unless there is a qualified first aider around not being offered interviews for positions and so on.
In my case on my side of the family I have only told my brother but not my mother or other relatives. My father was incapacitated for many years, not with MS, and I KNOW how she and they would react. it would be a HUGE and emotional drama. I have told other friends and my children (13 & 11) and family on my husbands side but they are all people who I feel can understand the situation. I could not have asked for them to deal with it any better. Sometimes they may want to ask questions and talk about it which is good for them and me. I don't think there are any hard and fast rules. A good starting point is a need to know basis and take it from there. I wish you all the best.
muu

Muu--what meds have you/do you take (just curious)?

Hi Kemond
I think it's not only a matter of who you tell but how you tell them and how you act after you tell them. It's totally up to you whom you tell over time. You can take your time and tell people whenever you feel like it. But when you do, how you tell them is important if you want them to treat you in a certain way after you've told them. MS is only a part of you, not the whole of you. People can see you deal with it in a positive way and will then react the same. People will take their cues from you. You're in control of this and people who care about you will react the way you want them to. It's important for you to have a positive outlook on this because those around you will also, which in turn will help you.

It's still early for you so take your time to sort things out in your own head and get support from those people who you know will be there for you now. The others will come.

Lori

This is just a response to Chris 55's question.
For most of the time I have had ms I have taken no medication. In the last two years I have modified my diet to exclude wheat, gluten and dairy within reason. I take vit d, fish oils and evening primrose. I am now SPMS and there are no drugs licensed in the uk for it altho I have been on the drug trial for Lamotrigine since June 06. Its a double blind trial so I could be on either the drug or the placebo.
muu