Introducing me!

[kwarendorf]

I'm a 51 YO male living in NYC. I was officially diagnosed 3 weeks ago, but apparently I've had MS for 20 years or so. I've got lots to learn and hope to learn lots here. Here is my response to another thread, which will fill in some of the blank :-)

Date of diagnosis: 9/21/2011

Type of MS:   Relapsing/Remitting

Medication DMD:   None yet

Time from first symptom to diagnosis:   20 years / 2.5 months - First episode was 20 years ago. I didn't really pursue. Then again 2 years ago and didn't really pursue. They both resolved fairly quickly. This time my first symptom was first week of July this year. I pursued and was diagnosed 3 weeks ago.

How many neuros to diagnose: 3 -One suspected and referred me to an MS specialist. He diagnosed but was a nightmare. No on # 3 who is amazing and will help me manage going forward.

[kwarendorf]

Yes :-) He referred to the nature of the lesions on my brain MRI, including the most recent active lesions from August. The fact that this began more than 20 years ago, that the first major relapses wer 18 years apart and the second wer 18 months apart. He also mentioned the persistent nature of some of my symptoms.

[anon07072023]

I was just wondering how did your neuro determine that you have moved to SPMS?  What types of things pointed him to that diagnosis?  
For instance, did you have many lesions, and now your MRIs aren't really changing? Or is it that you have symptoms that are not going away and are progressively getting worse?

I really hope Tysabri will help you!
Good luck!
Kelly

[kwarendorf]

Well it looks like I've been promoted! According to my Guru, I've moved on to SPMS! The goal over the next 6 months is to stop the progress of the disease. He thinks Tysabri is the way to go, so I'll be starting that in the next couple of weeks.

[anon07072023]

Wow, 2 hour long meetings with your neuro?  That's amazing! It's good that you have an appt scheduled to discuss the DMDs.

[Guitar_grrrl]

Welcome!

I was diagnosed at age 50 after 20+ years of on-off symptoms.  I'm on Tysabri, and I'm dealing with daily symptoms.

Here's my approach: I get out and have FUN!!  I've always been physically active with cycling, kayaking, and I used to surf.  Now, I pay for any fun for about 3-4 days, but it's totally worth it, in my book.  Just today, I took a beautiful bike ride in the woods - saw yellowing leaves and apples blushing red in little "pocket orchards".  Towering redwoods, the fog coming in off the shore...Great day!  I'll pay for it for a few days, but to see all that beauty, get a little exercise, and breath all that fresh air...Yeah!

[kwarendorf]

I don't have a DMD strategy yet. My new MS doc does his initial consultation in two meetings, each about 2 hours long.

The first meeting is the assesment, which included about an hour of him asking questions and taking notes. This was a week ago.

The second meeting is the management meeting. This is when we will discuss DMD etc. My management appointment is scheduled for November 3rd.

[anon07072023]

Welcome to the forum/community.  You've found a good place.  

Do you have plans to start a DMD?

-Kelly

[kwarendorf]

I think you may be on to something Bob. I have had a bunch seemingly unrelated little nags fo a while. Things like mild tinitus, bladder emptying issues. I never put them together. Aches and pains I chalked up tp getting old. The double vision and extreme fatigue of this summer appears to have connected the dots :-)

[COBOB]

Welcome to the board.  There are a few guys here.  I was diagnosed a year ago with RRMS and hit 50 this coming Jan.  To a degree, I think guys just put up with stuff until something comes along they can not put up with.  That may be one of the reasons some of us are diagnosed at an older age.

Again, welcome.

Bob

[shermay]

Hello and welcome.

You'll find a wealth of information here from fellow members, so please any questions ask away, there's no limit to how many.

Nothing is taboo here, we talk about everything.  

Alex is right, it is a roller coaster ride.

Again, welcome to our little corner.

Debs

[Deb61]

There is lots to learn about MS and this is one of the best forums for learning about the disease and getting support.  One of the biggest issue for me right off the bat was choosing a DMD.  

Have you gotten any information yet about a DMD?  I remember this being pretty overwhelming when I was told I had MS and almost in the same breath was told of about three or four options of medicines.  I went home that evening with an arm load of stuff to look at.  Then, I literally changed my mind back and forth from one DMD to the other about two or three times a day.  I was more anxious about choosing a medicine than learning that I had MS.  

Welcome and let us know if you need help with anything.    

Deb

[Jifr]

Hiya.  Good for you for reaching out for support!  

[Sumanadevii]

Welcome to the board.  The first year after dx is a bag of mixed emotions...We are relieved to finally know what is wrong with us but begin to worry about our future.  I wouldn't spend any time worrying about the first ten years of your MS as little could be done to help you during that time period anyway.  It has only been the last ten years that DMD's became available to us to help prevent more damage.

I think it is very important to have a neuro you trust and can work with easily.  They should be available when you need them ...not two weeks after the fact.  It seems you have found just that!!!  You're one step ahead of many of us.

[HVAC]

Nice to meet you and welcome. It can be a lot of different emotions the first year. We call it the roller coaster. The best thing I did was get as much information as possible.

Alex (female)

[Wobbly]

Welcome to the forum, sorry to hear you have MS, but your in a good place to get information and chat with others.

Check out the "Health Pages" on the right side of this page, there is a link to alot of information there.

take care and stay in touch, let us know how things go
wobbly