Newly Diagnosed in SW Washington

[Codex1554]

Greetings All,

New to MS and new to MSWorld. Through a brief perusal of the board it seems everyone has a story of their journey so here's mine:

In July 2011 I suffered sudden hearing loss in my left ear followed by vertigo and nausea. Because of the symptoms they started looking at inner ear issues and concluded I had Labyrinthitis. The prescribed Prednisone and I was back on my feet, more or less, in two weeks with most symptoms disappearing with the exception of some lingering loss of hearing.

Fast forward to March 13 of this year and I again suffered hearing loss but this time it was in the right ear. The following day I had severe numbness/tingling on my right side from my ankle to my thigh, down my right arm and on my abdomen. Panic doesn't begin to describe it.

However, I have some decent health insurance and doctors so down the long road we went. The short of it is a full-brain MRI was done and the radiologist and neurologist were in complete agreement that it is RRMS. Since then most of the symptoms have ebbed with lingering hearing loss and lessened but persistent numbness and tingling in my right leg/foot and right arm.

Now I'm waiting to get through the insurance bureaucracy to start on Copaxone. I'm hoping to start within the next two weeks if not sooner.

My emotional reactions have run the gambit from panic to relief, from scared to confident, from grief to acceptance, all in a short amount of time. To date my case seems to be relatively minor compared to many others and for this I consider myself very fortunate. I don't want to look to far ahead to what COULD transpire as I've been one who tends to live in the now. I'll worry about today because tomorrow will take care of itself.

I've taken quite a bit of time to read as much as possible in terms of the disease itself, DMTs (DMD seems a more common acronym on this board) and the experiences of others. I will never consider myself an expert because it seems there is a huge range of experiences to draw from.

So who am I? I'm a 47yo IT Geek in SW Washington State, right across the river from Portland. I have been married to the same wonderful woman for 18 years and have three sons ranging in age from almost 15 to almost 23. We enjoy camping/RVing in our travel trailer year round, hiking and geocaching among other things. I'm a huge fan of the group Rush and see them every time they roll through the area. I'm also into astronomy.

So with all of that said I send my greetings to you! I am not sure what I can bring to this board beyond a positive attitude and a smile but I guess we'll find out.

Thanks for reading,

Codex1554

[Hazelsparkey]

I just wanted to say welcome and thank you for sharing your story. You are right everyone has a story. I am also new to this as my son has just been diagnosed with RRMS two weeks ago. I can relate to your emotions that you wrote about. I did embrace what you said about living in the here and now. I have been gripped with fear for my son but I am going to let that go and just deal with right now. It is just to over whelming to hold on to the what if's. This is a wonderful site for information and support. Thank you again for what you shared.
God Bless you always
Hazelsparkey

[struck-a-nerve]

Waiting dx in Portland Nice to meet someone close by. My MRI was on the 12th of April and like you everyone agrees it is RRMS. LP results are pending and Spinal MRI is next week. Don't think it will be much longer until they dx. First attack was throughout much of 2011. Second one came on the 5th of April and was much more severe, including vision loss. I don't think it will be much longer before I know for sure.

Glad (despite the reason) to have you on msworld!

[Codex1554]

Originally Posted by Hazelsparkey

I just wanted to say welcome and thank you for sharing your story. You are right everyone has a story. I am also new to this as my son has just been diagnosed with RRMS two weeks ago. I can relate to your emotions that you wrote about. I did embrace what you said about living in the here and now. I have been gripped with fear for my son but I am going to let that go and just deal with right now. It is just to over whelming to hold on to the what if's. This is a wonderful site for information and support. Thank you again for what you shared.
God Bless you always
Hazelsparkey

Hi Hazel. So far the most difficult aspect for me has been embracing the fact that I have no control over this disease. Yes, it can be managed and hopefully the attacks will be less severe and further apart but I have no direct influence over when and where that will happen. For a control freak like me that's the worst.

I don't know how I would react if it were one of my children. I'm sure that's an entirely different perspective. My own outlook is that things happen for a reason even if we don't know what that may be....Best of luck to you and your son!

Originally Posted by struck-a-nerve

Waiting dx in Portland Nice to meet someone close by. My MRI was on the 12th of April and like you everyone agrees it is RRMS. LP results are pending and Spinal MRI is next week. Don't think it will be much longer until they dx. First attack was throughout much of 2011. Second one came on the 5th of April and was much more severe, including vision loss. I don't think it will be much longer before I know for sure.

Glad (despite the reason) to have you on msworld!

Hi Struck-A-Nerve. It sounds like you are "close enough" to a dx that it's just a formality. As part of our quest for information my wife and I are heading up to St. Vincent's on Wednesday evening for their "Newly Diagnosed: MS 101" presentation. Perhaps that might be something you would be interested in? It's free but you do have to RSVP to let them know you are coming. If you go let me know and perhaps we can meet there.

Codex

[hunterd]

WELCOME CODEX!!!!!! You have a great attitude. Living day to day is probably the best way to go about the whole ms thing. Keep doing all those wonderful things with the family, they appreciate it. Good luck.

[vlaugtug]

Hazelsparky, your posts regarding your son's recent diagnosis struck a nerve with me. My daughter was recently diagnosed also. This has been a difficult journey for me as a mom and I really dont know where to turn to find support as a parent and also to find the knowledge I need to better help her deal with this.

[struck-a-nerve]

Originally Posted by Codex1554

Hi Struck-A-Nerve. It sounds like you are "close enough" to a dx that it's just a formality. As part of our quest for information my wife and I are heading up to St. Vincent's on Wednesday evening for their "Newly Diagnosed: MS 101" presentation. Perhaps that might be something you would be interested in? It's free but you do have to RSVP to let them know you are coming. If you go let me know and perhaps we can meet there.

Codex

Hi Codex, I actually got the call this afternoon. My neuro asked if I wanted an appointment or to hear over the phone. I took the phone. Good thing since my appointment isn't until the 14th.

I would absolutely like to go to that presentation, my husband confirmed he would like to go and can drive me out there. Do you happen to have any information (webpage or phone number) that I could use to RSVP?

Thank you a million times for sharing that with me.

[Codex1554]

Originally Posted by struck-a-nerve

Hi Codex, .... Do you happen to have any information (webpage or phone number) that I could use to RSVP?

Thank you a million times for sharing that with me.

NOTE: I don't have 5 posts yet so I can't post URLs at this time. I will try to send you a private message although I'm not sure of the limitations of my account. If worse comes to worse I'll post a couple more messages then come back here.

But, I found the information on the website of the Oregon Chapter of the National MS Society and again on the Oregon dot Providence dot org website for the hospital.

Codex

[Codex1554]

Don't know why I didn't think to just post the relevant information:

it's Wednesday 5/2 @ 6:00PM at St. Vincent's.
Email Shirley at
or call at

Codex


**phone number and email address removed by Moderator in compliance with MSWorld guidelines. go to UserCP > Edit Your Details to put in your profile**

[struck-a-nerve]

I will find it!!! You can email me if you want at
**disguised email address removed by Moderator in compliance with MSWorld guidelines. go to UserCP > Edit Your Details to put in your profile**

We can coordinate how to meet!

[Codex1554]

I now have 6 posts so let's see if this will work:

http://www.nationalmssociety.org/cha...nce/index.aspx

http://oregon.providence.org/patient...01&Type=Events

Codex

[struck-a-nerve]

I got the RSVP in place. I will add my email to my profile so we can try to meet up tomorrow. Thank you so much for letting me know about this!