How ironic my diagnosis of MS came on National MS Day
Hi Everyone, Im Robin an Army wife and a newly diagnosis MS patient. It took 10 months to diagnosis me with MS. After many test and many physicians my new PCM and a Neurologist agreed on the results of an EMG and a brain MRI, also an earlier neck MRI that had been done and were able to come back with a confirm diagnosis of MS. Which sure did explain a lot. So now I wait for Tricare to approve another visit to the Neurologist to begin treatments.
So I am one day into learning all the information I can obtain on MS and 7 months into my husband 3rd deployment to Iraq (5 more months to go). I think telling him was harder then learning the news myself. He is still dealing with a mortar hit from back in January and the after affects of that physically and mentally and then for me to hit him with my news was more than overwhelming needless to say.
My mother is in complete denial and the Army community I live within so far isn’t very excepting. I am in no way ever going to use this disease as a crunch to my husband career but since its so new in our lives I don’t think they understand that as of yet.
My reason for coming to this forum is because this strong, independent Army wife is scared out of her mind. I have cried on and off since the call came in at 1500 yesterday.
I don’t what is worse, the symptoms of the attack or the diagnosis. Then again if not for the full blown attack it would still not be diagnosed. The pain is so intense, slurred speech, on and off vision problems, extreme fatigue, complete numbness in my left hand and left side, problems with my balance, tingling sensations as if my arms have fallen asleep even though I am active at those moments, electrical shocks through my legs and a lot of vibrations through my body, very foggy headed at times, difficulty swallowing at times, and the list actually goes on.
So in the past 3 months I have been diagnosis with depression, anxiety, panic attacks, OCD, OTD, 3 bulging disks in my neck, Ulcerative colitis, and now MS.
I feel guilty, sad, angry, confused, and yet I find myself laughing at very strange moments. There have been so many mornings I couldn’t get out of bed for periods of time cause of the pain and fatigue. I live alone (with my 2 little dogs--Chihuahua’s) due to the deployment and making it to some of my medical appointments are just not always something I can do.
I just want to close the door and all the blinds and hermit myself but because of the vision problems I can’t see without as much light as possible (that is one of my laughable moments). How do all of you do it? How do you stop feeling guilty if for a moment you are thinking you are going to suck the life out of your husband/wife/family members or friends? How do you deal with an uncertain future? I guess the ultimate question and probably one that can not be actually easy to answer is how does someone live with MS?
I am sure that you will receive many messages of support and welcome from other forum members. I was dx'd in March with RRMS so also feel very new and I was drawn to your message for the reason that my husband is also in the army (volunteer) and deployed at present to Afghanistan. However I live in UK so there are many things that are different, particulary with regards to medical treatment etc. What we share in common is getting a dx when our husbands are away and having to deal with it on our own. I was diagnosed the week after he left when like you I was having a relapse and felt terrible. I am now 2 months later beginning to feel better ..but it has felt a long time.
This is very tough and I really understand your fear, isolation and not knowing how to deal with it. I would just suggest to you that you take things very slowly, one step at a time and don't expect to have all the answers for a long time. As you will see from the site there are often new developments that people have and so that feeling of uncertainty is there for everyone.
This is a good site to vent your emotions, to ask questions and to find new friends so I hope that it helps to know that there are many out there who do understand. I hope that you can find out about your treatment soon and take your time to decide what is right for you.
You've come to the right place to get your questions answered, to learn, to get support and to make a few friends, great bunch of people one and all! I'm sure the other's will come along soon, we're a chatty bunch lol.
I'm on the other side of the world (Australia) and its my bed time, i'll come back when my brain cells are connecting again.lol
PS Your the second to get their dx of MS today, very ironic!!
Like Sarah I too was dx end of March with RRMS after a few years of not knowing what was going on with my body.
How I cope is by prayer, support of friends and I try to keep a positive disposition in it all, in that MS is not a death sentence. I still have friends and family members who are scared and don't know how to deal with it, but I try to be patient and take it one day at a time.
This forum has been helpful to me and I'm sure will be helpful to you. Be strong, when you feel depressed and want to isolate, listen to your favorite music, talk a cool walk if you can. Just remember that you have friends and support here. I'd keep you in my prayers.
Welcome! Your not alone on receiving a dx on World MS day, it should of came w/a special card! kidding
Don't worry, Robin, you are amongst a whole forum full of friends and supporters now - it will be very, very safe to roll up those blinds and come out of the hermit shell.
We understand. Guilt like this can come from those expectations you put on yourself - so in turn, you feel like you are letting others down when you can't do something, or don't want to. Sound familiar?
I'm glad you found us and I look forward to being there for you as you get through this 1st phase of life w/a dx.
Wow, 2 DX on the same day here, and MS day. That is strangely ironic,huh?!
I am sorry to hear of your DX, and I know all the struggles you are thinking about. It is like a shock to our system to hear the word MS, and the fear of the unknown.
I am also sorry you are experiencing pain. That is of itself, makes things even harder to deal with. I know you are scared, and it is scary. Please take a deep breathe, and try to take care of yourself. I am sorry your hubby is not around to support you and your mother is in a state of denial.
The MS society has lots of information that is really helpful. I would check it out and start educating yourself about MS when you are ready. I have been DX a year now, and am just starting to get my head out of the hand and be more proactive in educating myself.
Keep posting here, this is a WONDERFUL supportive place. We all can relate to you and I am thinking of you and wishing you tons of strength right now.
How do we do it, Robin? We all do it the same way - one day at a time. This is truly a disease of good days and bad days. You never know which one it is going to be.
I know this is all new to you and to your husband, but in a few days or weeks you may want to discuss compassionate reassignment/ deletion/deferment policies with him and see if you would like ot request him to come home early. Compassionate leave policy differs among all the service branches, but the intent is the same. Sometimes we just have to bring our families together in person to deal with the cr ap life throws our way.
The best defense to being scared is to go on the offensive. Take charge of your fear by learning all your can about MS. We have great health pages here that discuss important topics in easy to udnerstand language. Take it easy and just learn a bit at a time. You don't have to know everyting tomorrow or even next month.
I guess we share the same anniversary now! I was diagnosed on Wednesday too. I hope you are having an ok time dealing with your diagnosis. I'm still in the relief stage. My husband is having a bit harder time then I am, I think because I just had a gut feeling that I truly have MS and he was a "lets not borrow trouble, we'll deal with it if we have to deal with it" thinker during this whole process.
Take it easy as you begin this stage of the journey. ((hugs))
My wife was overwhelmed and kind of scared more than I am even tho she was the one suggested that i might have M.S in january.
When DR told me I've M.S, my wife cried, and I said oh well, no one lives for ever I am always happy to wake up in the morning and told her we will take my life day by day. I've always had that mentality and it could be due to my PTSD. My diagnosis got me in sleepless mode, and waiting to take Triazolam in 2hrs so i don't have to worry about the percocet/Lyrica I took 4hrs ago making it worse.
Thanks to all of you for your comments. You just don’t know how much your words mean to me! I feel a little less alone and that relieves so much of the stress I was feeling. I spent the day I posted thinking I was going to drown in all my emotions. The next day I was mad and hit the internet for every bit of info I could obtain. The one exact thing that I found everywhere including this forum is MS is a mean little thing and will take as much as it can from you but doesn’t define whom the person in your heart that you are.
My husband unfortunately told his Command. I am not sure if he done so looking for some sort of support with those that he entrusts his life to or if he just was so in shock that he did it without thinking. Now we are dealing with the fall out from that. I have been told I must enroll into the EFMP and I better hope it doesn’t affect his career negatively.
I have always believed strongly that for everything there is a reason. With my experience in volunteering and working within the Army and now this DX I might just have found mine. I am not sure how excepting the Army as a whole is of MS but within a matter of a couple days I have learn that this current Command has a lot to learn. So as I am learning more and more about MS maybe I can teach them. Hugs to all of you and know that your in my mind and heart.
I just received my confirmed diagnosis of CIS/possible RRMS three days ago (I had been originally diagnosed a month before), after a bout of optic neuritis. I am still, like you, coping with the implications this has for my life in so many different ways. I think you've done the right thing by coming to this forum and meeting good people who will help you to confront this disease with more knowledge and advice than alone. We are in the same boat.
I pray and hope that your husband's superiors in the Army are understanding of the situation. Have you met other wives/family members of Army officers who have been in a similar situation? (not only with MS, but other chronic illnesses). Probably then can also give you additional info about how best to proceed in these cases.
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