AMA - Multiple Sclerosis

You said that the diagnosis period can be very long and I can certainly imagine that! It sounds like it is possibly aconfusing experience to be seriously affected by something unknown or uncertain, and frustrating to wait so long and go through many tests to figure it out. How were things initiallyafter post-diagnosis? As in, did you feel better knowing what it was, were you able to pin-point ways to help with more accuracy? Or was it perhaps scary to learn you had MS, and potentially did not necessarily help much due to the range of symptoms?

@QuickJazz For me, it was both immense relief and fear. Relief that I could finally start the correct treatment to control my symptoms and fear that I was facing possible worsening symptoms for the rest of my life. I also experienced feelings of shock. I didn't know how not to stop thinking of something unpleasant being a part of my life that I couldn't get away from. Diving into books and the internet to become an expert on 'me' was the first positive step I took.

You have fortunately been able to maintain a positive attitude and avoided seeing MS as the end of your life. That's great!! But would you have any suggestions for those struggling with getting past seeing MS as something that is disrupting and/or ending their potential for living a fulfilling life?

@QuickJazz Admittedly, I did not always have a positive attitude. It's not pleasant to learn that you may need to take another path in life and career. Fortunately, many advances have been made in the treatment of MS (and other incurable illnesses) that make it much easier to live a fulfilling life. I suggest studying your disease and your options first. Join a group for MS to learn how others become positive and live fruitful lives. Find a doctor you really connect with. Talk with a therapist about learning patience, distraction and life course options. And when the going gets really rough, come to 7 cups for 1 on 1 chats and self help guides, because the key to your life is within you!

Also, last question!!Do you feel open inspeaking with those around you about MS? If so, how have others reacted to hearing of your condition? I'd also particularly like to knowif you have any suggestions for thosehearing such news, in order to be the most supportive and understanding they can be.

@QuickJazz Thank you for your wonderful questions. I am very open to talking about my condition. As complex as MS is, there is much to talk about that is not generally known. The normal reaction I get when I tell people I have MS is confusion. "But you're not blind." "But you can walk." "You don't LOOK sick." The best way to support someone who has just found out they have MS or anything incurable is to react to how they are feeling at the moment whether it be shock, depression, anxiety, fear or hopelessness. Saying, "Don't worry," or, "Everything will be all right," is the worst answer. Listening and responding to their feelings and referring the self-help guides on this site is the best support we can give. The best online resource support I've found to pass on is www.mssociety.org

Congrats on the career path, sounds exciting! And thanks so much for doing an AMA. My question is linked to that last one from @QuickJazz :what would you say are the biggest misconceptions that people without MS have, about living with the disease?

@Michaelmichael Great question! I have found themostcommon misconception about MS is that itwill kill you. Not true. Recent studies show that with a healthy lifestyle, people with the MShave a normal lifespans. This doesn't mean there aren't challenges and probablechanges that need to be made, and that is whereknowledge and support is priceless. The following link terrific for naming the top 6 misconceptions about MS.

http://themighty.com/2014/06/a-life-with-multiple-sclerosis-is-not-a-death-sentence-6-myths-about-ms/

Ah awesome answer. I know people with MS but I wouldn't have been sure about that, I have to admit! Really interesting article too, thank you! Really glad you did this AMA!

Thanks for posting this Autumn! We've met before! You were the first (and only) person on 7cups that I've interacted with who has openly discussed their MS! I was 23 when I was first diagnosed, and I just celebrated my 25th birthday. It made me realize just how far I've come in that short a time. My initial reaction to diagnosis was a horrible experience, much of which I've actually suppressed. I'm told I lost all color in my face, said horrible things to people I care about, lost all verbal filters, and became unable to show strong emotion, if any. Since then, I've tried three different medications and settled on one that's actually tolerable! The last drug I was on, Plegridy, is actually the reason I found 7cups in the first place. One of its most prevalent side effects is "suicidal depression," and when I finally reached my emotional low point I decided it was time to seek help outside of therapy/medication/doctors. The community has been so supportive, especially the loneliness room that doesn't exist anymore. Thankfully, I'm now on Gilenya which has far fewer side effects for me! I'm able to carry out a daily routine again 5-6 days a week without getting too exhausted, and while my diagnosis is still a bit scary, it no longer feels like an absolute death sentence.

I'm not saying it's easy, but it's definitely easier. There was a point in time not long ago when I had my own viewing/funeral meticulously planned because I was sure the end was close. This community has been a very positive experience for me, and I can only hope others with MS find this resource!

@SadPanda1138 Thank you so much for sharing your experience! I remember you well in the chat rooms when we discovered we both have the disease. I understand completely how devastating a diagnosis can be. And learning more about it can sometimes cause more anxiety and fear. But I think we learn to acclimate....since the disease won't kill us and there are changes in lifestyle to be made. I'm so glad you chose to post to this page. I'd be happy to have you answer any questions along with me so others are able to see the similarities and differences with MS. Stay strong!

Thanks Autumn! I'd love to help answer any questions about MS that arise. I've been on MS-specific forums before, and in my experience they've all been very unproductive. Frankly, those forums have done more harm than good. This is only my experience, but I'm more than willing to help out here!

How have the most important people in your life reacted? My boyfriend of a couple years was the worse to deal with when thinking I had muscular dystrophy (pretty similar condition) I still don't know if I have it but I don't want to find out. He's a good guy but he's a shoe box when it comes to emotions. He tells me to "stop being a mess and be happier" when I'm having panic attacks through discovering my possible disease. Have you have a similar experience? Anything helps. I'm scared he will leave me

Hello @BrightSummer and I'm sorry to hear you are going through a diagnostic stage. :( A lot of times people react negatively to hide their fear of losing you. Have you tried asking your boyfriend if he had lost anyone in his family or circle of friends to a similar ailment? Is your boyfriend usually emotionally detached? Those are good questions to think about and get answers to.

I had to leave my partner after diagnosis but it was because there were horrible consequences in his family after his brother was diagnosed with the same illness. I think good communication with your boyfriend is the best thing for you right now.

I also had similar "shoebox" emotions from my dad. He is just someone who cares so much he has to hide his feelings or act gruff to mask them. It helped me to know that.

I think it's a good idea to surround yourself with supportive people. Perhaps try to talk with your boyfriend when you both are in a relaxed atmosphere. I truly hope your diagnosis isn't lifelong or serious, but you can never have too many friends. And always remember, we are here for you! <3

So sorry about your possible diagnosis! I know that doesn't really help, but I guess it's the socially acceptable way to treat that.

When I was first diagnosed, most people were scared of me in general. That, of course, was a part of the aforementioned experience. Outside of that, my family and friends have been very supportive. I've never been in a relationship myself (and feel like it would irresponsible to be in one at this point in my life) but I would imagine dealing with the diagnosis is going to be a real test of character for your partner. Not everybody can handle things like that, but if he decides to stay I would hope it would make your relationship even stronger.

Although, like I said, I'm perpetually single and probably not qualified to give advice on that topic.

If I find out that a friend of mine has MS, would it help or hurt them to know how I am truly thinking and feeling about that? I would not like to overwhelm them with my reaction. I am not sure how far to take this honesty thing. Or should I just support them and find another place or person to work through my feelings?

@OceanRest Your friend is probably stronger than you think since they are the one actually experiencing symptoms. As a friend, honesty is always best. You can't be a good supporter if your feelings aren't out in the open. Perhaps try asking your friend if they are comfortable talking about their illness and then if they are comfortable talking about some of your questions or concerns. This forum was made to answer general questions and alleviate general concerns but each case is different. You know your friend better than most people. I think you should let them know you have concerns and try to talk to them about it in the best way you know how in dealing with this friend. I think your friend would be grateful that you've been honest and you'll be able to be more supportive once you've discussed concerns and fears. Good luck! :)

@AutumnLeigh - Your answer makes a lot of sense. Thank you.