Looking for advice

[mattflo]

Hi,I was just told i have MS i am 26 was a college baseball player and now i am a college baseball coach. I am driving my self crazyyy the past couple of days. I would really appreciate any advice yall would like to offer me. Thanks guys

[doublevision1]

Hi there,

you might find it encouraging that there are several athletes who have continued in their sport following their MS diagnosis, eg: Chris Wright (basketball); Josh Harding (NHL); Courtney Taylor (CFL); Demitrius Omphroy (soccer).

There is a Facebook group of about 800 members called Athletes Fighting Multiple Sclerosis.

The diagnosis is a scary thing but something I've learned since mine is that our worst fears are rarely realized. It will take a while to absorb the shock of being told you have MS. you'll probably have tons of questions, and hopefully you'll continue to make use of this forum for information and for support. Those if us here who have MS have all been exactly where you are right now. We can empathize and understand in ways that the non-MSers in your real life cannot.

[mattflo]

:) thanks Karryon

[karryon55]

Hi Matt, I am also newly diagnosed & wanted to welcome you to the forum.

I just had one bit of advice for you that is quite close to home for me as well. Please don't take the radiologists report as a definite dx of MS. I was told I had MS based on a MRI report & then I was told that this was not the case. I have since been dx'd approx 10 months later.

It takes a Neurologist to diagnose MS & the Neuro has to exclude any other possible mimics (there are lots) before giving you that label. The Neuro will give you a Neurological examination & that will give him a lot of information on what's going on in your central nervous system.

They will probably order some other tests & in some cases they will want to watch you over a period of time. There is no exact pattern of how you get dx'd but I didn't want you to go there expecting that what the radiologist has said to you is definite. The radiologist doesn't know about your history & has not done an examination on you.

I went down that road & even though I have since been dx'd it didn't do me any favours having to go through that. It causes you a lot of stress that may not be warranted. I hope you go well at your appointment & you get some idea of what's happening. Let us know how you go.

Karry.

[Cann1980]

Hi Matt,
You have some great advise above!! I can't say it better than them. Just wanted to say hello from another newly diagnosed MSer.
Do take the time to research. It was what is still getting me through this new part of me. Understanding will help.
Ask questions here too! Don't be shy ... Everyone here is so helpful and patient and a fountain of knowledge!!!!

I hope your appt on Monday goes well.
Candace

[mattflo]

Wow!!! Thank ya'll for this awesome advice. My first apt is Monday and i guess Iv been going through a relapse the last 3 weeks with my hand with no sensation. I have 3 lesion i guess that's how you say it. Iv been so down on my self and emotional when im hardly ever emotional. I cant thank you all enough for giving me some advise to help me through this week.

[TLC_31]

No doubt I was scared upon my diagnosis 10 years ago, just before my 34th birthday. I’d had scattered unexplained symptoms for 10 years before that. Of course I’m not cured, and the disease still could potentially ravage me, but my fears upon diagnosis have not come to pass. My MS remains largely invisible to others. I’ve run seven half marathons (four under two hours) in the last two years, and I’d never run that distance before.

The disease follows a different course for everybody, but MS is much easier to deal with today than 10 or more years ago. Aside from internet information sites and forums (be aware that some people, including on this site, frequently post inaccurate information), you have many more drugs available to fight the disease. I have used Avonex; like the other worthy disease-modifying drugs, it doesn’t relieve symptoms, and sometimes it seems pointless to use it, but I credit it for helping manage my condition. A synopsis of the various treatments is at this link:

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx

The NMSS has other good information, but it’s not interactive. Come in here and ask questions anytime!

[kwarendorf]

See Matt, I told you. If you post it, they will come :-)

I agree with both Sarah and Laura, breathing is good! If you have just been diagnosed (DX'd), my guess is that you were relapsing recently. If so, high dose steroids can help reduce the inflammation that is causing your symptoms. Following a 5 day course of Intravenous Solumedrol (IVSM) the symptoms related to my last relapse disappeared.

Once you get the relapse dealt with you will likely have your choice of 9, count 'em 9, disease modifying drugs (DMD's). 20 years ago there were one or two. You are young and healthy (short of the whole MS thing) and there is every likelihood that MS will not cause major changes in your life style. I was DX'd at 51 and apparently I'd had MS for 20 years at that point. I get up every day and go to work like 'normal' folk. If you saw me you would never guess I had MS.

You have just been given a majorly unsettling piece of news. Take time to digest it. Many have compared the receiving of an MS diagnosis similar to the stages of grieving the loss of a loved one. Know that we are a very friendly group with a world of life experience to share.

Ask us lots of questions!

Kyle

[SarahL2491]

We often do that, don't we!  We go way back and Laura was one of the people who "held my hand" as I wound my way into this forum and into MS-land.  I treasure her as a friend.

[Lulu54]

That's too funny that both Sarah and I were answering you at the same time - obviously we agree on the importance to take a deep breath, and do it more than once.

[Lulu54]

the best advice I can offer at this moment is -

stop.
take a deep breath.
understand this is not a death sentence.
learn what you can about MS, but don't try to do it all at once.
take a deep breath
be kind to yourself
understand your disease before you share this news with others
go to a doctor who specializes in MS, if possible
give yourself lots of time to adjust - it seems to take about a year to fully grow into this new you

You are in a very difficult spot right now, but believe us that it does get easier and better.  This is a great community - I hope you will stick around and ask all the questions you want.  That's what we are here for - you're not on this journey alone (as trite as that may sound).

I know others will be here soon to share  their advice - but that is my hit list.  And don't forget to breathe.  
I'm so sorry you have joined the club - best, Laura

[SarahL2491]

Am sorry to here that you have MS but welcome to our corner.
First, breathe……

its usually a slow moving train and you are going to possibly go thru a ton of emotions as you try to absorb it.

There are a ton of new books out there, the MS national society, I think, has a lending library and such.  There is a ton of information on this site on the right hand side.  

Is your neuro going to put you on a DMD medication?  We ask a lot of questions, we're just a chatty group that pool the information that we have learned from dealing with our new bff that we don't want and didn't invite.

We are all just MS patients who share what we know.  We offer advice, share, joke, cry, vent, you name it, share resources, etc., you should feel right at home here.  There are even topics on dealing with it at the workplace.

Welcome
Sarah