Multiple Sclerosis (MS) Support Group

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Squeemom2 10/09/2012

Good morning! I'm a 30 year old mother of 2. I have been feeling like something was wrong with me for about two years. It all seemed more like lupus (joint pain, fatigue, skin rashes) but all tests came back normal. Normal everything. On sept 10th I had a rheumy appt. My blood from that test came back with a slightly elevated ANA. Still all else was normal. That same day I developed a strange bruise on the back of my calf. It looked like a giant round hickey and didn't hurt to the touch but the inside of my leg hurt. That faded slowly over the course of 10 days. On the 11th day I was exhausted. That was a Friday. On Saturday, being the young active trooper that I am, I went out drinking. Smart girl right? Sunday, I was dizzy. Monday I was more dizzy. Walk in doc said labrynthitis. Tuesday I had double/crooked vision. Wednesday my eyes stopped cooperating with each other and my husband decided to take me to the ER. They did an MRI of my brain and sent me home with a follow up with a neurologist. Thursday the left side of my mouth stopped working. Saw the neurologist and two eye doctors who, based on my bouncy eye movement, lack of balance, and facial muscle weakness, all suspected MS. Had a spinal tap that afternoon and holy wow that sucked. Friday I started a 3 day course of IVSM and holy wow, that sucked too. Saw a different neurologist the following Tuesday who specializes in MS. He reviewed all of my tests and said he's 80% sure I have MS.

He found one old lesion on my brain but couldn't say for certain it was MS related. My csf came back negative for antibodies but positive for o bands. Also my vitamin d is a little low. I responded well to IVSM. My sight was almost normal but now I have about a million swollen glands and my double vision is returning. Neurologists office says I prob have an infection which is causing the nerves to act up again. They don't want to start me on MS treatment yet. Watch and wait.

Today I have a followup with my rheumatologist and a c spine MRI. I'm also having a constant panic attack. I'm a hypochondriac anyway and I have panic disorder so this is all sending me off the deep end. I just wish I could have a diagnosis, any diagnosis, so I could start fighting. How can you fight when you don't know what you're fighting? I haven't been to work in over 2 weeks. I can't care for my kids or drive my car. I want my life back. Just needed to get that out in the company of people who understand. Thanks!

deleted_user 10/09/2012

Welcome to our MS group here, Jessica. It sounds like you are on the right track to figure out what is going on. If your neuro is 80% certain you have MS, that's a major accomplishment as so many wait years before they are dx'd. The symptoms you have sure sound like MS. If that is your dx, expect your neuro to put you on one of the MS meds to reduce the chances of further exacerbations. With MS, expect your emotions to be all over the place, especially feeling down. Be sure to tell your docs not only how you feel physically, but emotionally, too. That's so important. I hope things do get better for you.

Squeemom2 10/09/2012

Thanks Bobby! I'm trying to be positive and I have had a few really good days emotionally. Unfortunately, for much of the last two weeks I have been miserable. Not only would MS bring a new uncertainty to my life, it means I have to change my life. Which I need to do but don't want to do. I'm the woman who can and does do EVERYTHING for everybody, all the time. I also smoke and still enjoy partying a few times a month. I eat junk and drink diet dew like water. My life is going to have to change....in so many ways. And that is devastating me. My kids are so young too. 2 and 3. They are not handling having a sick mama very well. My husband has been wonderful but if this is our life going forward, I don't know that I want o put that burden on him. Ugh. So much going on in my head right now....

deleted_user 10/09/2012

I am unsure by what you mean by your life is going to change so much. Either it has already changed, like a long while ago, or it hasn't changed. It is kind of like being a little bit pregnant; either you are or you aren't.

And you are not obligated to finance someone's hot tub or anything else. Just take one day at a time.

almairis 10/09/2012

Hi

Glad to know your symptoms are being validated and you are getting closer to dx. Don't worry about your husband,,, remember in sicknesses and in health,, well its time to see the other side of health.

With ms you make adjustments, stress is enemy number one.

Alma

Welcome to ds

deleted_user 10/09/2012

Welcome to our family Jessica! Sorry to hear you've been having problems but it's nice that you are close to diagnosis. You will find a lot of support here. I think as with all of us, your life changes day to day. Some days we feel better than others. We make adjustments to our lives depending on how we feel and if our symptoms are only temporary or will be lifelong. We never know what we will wake up with or what we won't. You are on the right track.... keep your head up and come here for support any time!

Amy

qazo 10/10/2012

Hi Jessica,

This certainly sounds like ms, however with that round rash....might be wise to rule out Lyme disease which can mimic ms.

I really agree with Alma, minimizing stress makes a huge difference, you might want to start telling others no and make your ms a priority! Alma also recently quit smoking and has seen some amazing results with her health, maybe she might be willing to share a tip or two if you ask her, I don't think she charges either?

I believe with the right lifestyle changes you will be able to manage your ms and still have a fantastic life.

Wishing you all the best!

lchoppel 10/10/2012

Even though no definite blood tests exist for MS, blood tests can positively rule out other causes for neurologic symptoms, such as Lyme disease, collagen-vascular diseases, certain hereditary disorders and HIV/AIDS, I'm sure your neurologist can rule out Lyme disease easily for you.

Everyone's initial reaction to geting an MS dx is going o be different. Whatever your experiencing, whether it's shock, denial, anxiety, anger, or even relief (or some combination of all of these) keep in mind that these reactions are normal, and that you - and those that care about you - are going to reexperience some variation of them whenever MS brings new symptoms and challenges into your life.

I'm sure you have many questions in your mind. "This can't be happening," "This isn't happening," "Why me?" "What's going to happen to me?" "Why can't the doctor fixe what's happening to me?" to "Thank goodness - I thought it was something worse." These are all very good questions,and common amongst us.

So what do you do now? If the dx comes back MS, I'm sure your emotions will kick in quickly, whetever words the doctor said after giving you the dx may be lost in a blur. The National MS Society offers a variety of publications and programs that may interest you. The Multiple Sclerosis Association of America is another good resource to tap. Bookmark these sights as you will be using them often, I also suggest you pick up the book, "MS for Dummies. It is an excellent source that's easy to access and easy to swallow regarding what happens in MS - what kinds of symptoms it can cause, how it can affect your life at home and at work, what you can do to feel and function up to snuff, and how you can protect yourself and your family against the long-term unpredictability of the disease.

Living with MS is like owning a large hedge. The more you manage it, the better the outlook.

You have come to the right spot to help you get through this all. Feel free to post anything you are feeling about MS and I'm sure you will get lots of caring responses.

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