RRMS initial diagnosis

by Dana
(Mentone, Indiana)

I've heard that everyone is first diagnosed with RRMS. I understand little about MS, and I believe it baffles even the experts at times. MY question is, when does a doctor get a clearer picture of the specific type of MS a patient has?


I'm due for my first post-diagnosis MRI next year, in June. I've had vague MS symptoms as far back as 2004. I was diagnosed in August, 2012. Since my diagnosis I've one month, almost exactly of being pretty much symptom-free, or not too bothersome.

My symptoms range from tingling, numbness, fogginess in thinking, balance issues, vertigo, memory loss, usually short term memory loss, loss or decrease of physical sensation, speech problems such as not being able to find the appropriate words (and I was an English honor student and English major) itching, bladder urgency, my left-side is affected much more than the right, and I'm left-handed.

Should my neurologist be specialized in MS? Mine deals mainly with sleep disorders. I live in a remote area of Indiana, have numerous other conditions, and there are NO meet-up MS groups in the entire state that I can get to.

I realize how diverse and mysterious MS is...and I assume there's no prognosis for anyone, really. You sort take it day to day. Info, is much appreciated.

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Apr 03, 2015
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You Have a Great Attitude
by: Akrista

Hi Dana,
You certainly have a great attitude for someone who was recently diagnosed with MS. You also seem to know a lot about the condition, which is something many people struggle with at the beginning. I do apologize for not answering your question and hope that you have found answers or at least been able to deal with your MS up until now.

Your symptoms then, seem to be pretty common as far as multiple sclerosis symptoms go - the numbness, tingling, brain fog, balance issues, etc. - are the same as many people with MS experience. The fact that it affects your left side and you are left-handed, must be a bit of a bummer. Hopefully you’ll be able to manage that.

As far as finding a neurologist who specializes in MS - this would be the ideal situation for you. Hopefully you’ve been able to find one by now and one who is working along with you to manage your MS. Sometimes, depending on your insurance, transportation to and from doctors appointments is provided as a service. That way if the doctor you find lives far from you, at least you have a way of getting there.

If you haven’t already - become a member of the National MS Society (NMSS). They send out flyers, newsletters, and have a monthly magazine, that helps you keep in touch with others in your area. Another thought would be to start one of your own. If you attend a church or have access to a room at your local library, try getting the word out that you are looking for others who have MS to start a support group. I believe this is how most groups get started anyway.

Your first question about RRMS. It is true that most of those diagnosed with MS begin with relapsing-remitting MS - about 75% - and some of those go on to a progressive form. Most people with MS never experience significant disability, it’s just that the ones who do are the ones that are the most visible to everyone. Most people with MS live with invisible symptoms like the ones you are experiencing. That’s why people make the comment - "oh but you look so good".

You may look good on the outside, but on the inside, it’s a whole other story. Your attitude, like I said earlier, will be what helps you make it through the tough days. You have been able to get to a place where you can "take it day to day". This is something that takes many MSers months and sometimes years to realize. So in that, you are way ahead of most. You would be the perfect candidate to begin a support group for people in your area.

I have no doubt that your attitude hasn't changed much in the years you have had MS and hope that you are doing well at managing your symptoms as well as the stress that goes along with them. Hope you’re doing as well as you can with your MS.

Take care,
Akrista

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