Announcement

**PositiveMS** · 03-21-2014, 10:30 AM

Originally posted by Pfaz View Post

Before I wouldn't have considered the things I want to do now. All of the sudden I want to train to run a marathon.]

I have decided to look at everyday as a new and different adventure.

You just mentioned two things that struck a chord with me.

1) I also want to do things I never ever wanted to do when I could. Four years ago I would occasionally go for a jog. I did NOT like jogging at all. I found it boring and tedious

Nowadays, I daydream about being able to jog around the city. It's something I badly want. Lol, it makes no sense! I think I have ambition to do loads of things just because something has put the brakes on my physical ability.

2) Every day IS an adventure. I mean I'd much rather not have this kind of adventure, but it's a fun way to deal with the hand you've been dealt. Better than moping around.

I enjoy your attitude to MS. It is similar to mine

**Seasha** · 03-21-2014, 11:00 AM

Hi Pfaz and welcome! Your last sentence gave me a LOL for sure - I like your attitude and I try to keep things lightened up too. (Sometimes that can be challenging, tho) I find that laughing at myself keeps me sane and helps those around me. Maybe we're crazy, but hey! who cares?

We can always use some positive outlooks here and glad you joined us.

**LynnC** · 03-21-2014, 12:43 PM

😎 Laughter is always better!!

This is so timely for me-I like to be with me more when I have a smile in my heart AND on my face. And when I do, I find myself more aware of what those a around me are feeling-and reaching out is a natural feeling. And it just feels right!

**HobbitHead** · 03-21-2014, 02:41 PM

Originally posted by Pfaz View Post

When the waitress came to our table I asked her if she could throw a few more logs on the fire.

I so laughed at your comment! What a sense of humor. lol

I think there should be some sort of stipulation that it can't be above 68 degrees ANYWHERE. I am so not looking forward to summer.

**Pfaz** · 03-23-2014, 10:10 AM

It was nice to get all of your responses. I was afraid after I posted that some might interpret my story as me thinking MS was some how funny. On the contrary, this disease as my neurologist put it " sucks".

I get mad, sad, and scared; just like everyone else. I choose to try and keep some sense of humor or find some humor daily to keep from the crazy chaos, uncertainty and sporadic symptoms.

With that being said, thank you for your responses. It is so very refreshing to hear from people who know what I am going through. I have a great husband and daughter. I have great friends but somehow it is just different when you know there are people who "get it".

Keeping the faith and the laughter.

**Thinkimjob** · 03-24-2014, 06:15 AM

Oh, no, there's humour in this ride to hell. If there wasn't there'd be no point. If you look at as an "out of body" experience, it Is truly fascinating.

**golfwidow** · 03-24-2014, 08:22 AM

It helps to have a sense of humor with MS !! You just keep on seeing the humorous side of this !

**bree2013** · 03-24-2014, 01:20 PM

Originally posted by Pfaz View Post

I am 43 and am married with a 19 year old daughter. I just got my confirmation a few weeks ago, but am still going through testing. It started out as a re-flair of Epstein- Barr and turned into a crazy ride so to speak.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

Hi Pfaz,

Sorry for your recent dx but you've come to a great place with lots of caring people and good info and advice.

I'm curious about your "reflair of Epstein-Barr". Would you mind describing what your reflair entailed?

I'm asking because my Dad (78 yrs) has been complaining of some symptoms since November 2012 and he isn't feeling any better. We've been trying to get doctors to figure this out and it's very frustrating. I finally had to make a list of what his PCP should test for -- not the usual CBC and cholesterol (Lymes disease, lupus, etc)

Anyhow, his EBV came back high -- all three tests. I think his PCP is now taking my dad's symptoms seriously and has referred him to an infectious disease doctor in June
-- he's been on a waiting list for over 3 months. Hoping a lot of people feel better and cancel their appointments so he can get in earlier!

So, if you wouldn't mind, could you describe some of your symptoms with the EBV reflair? Also, if there anything you would do to help the flair?

Thank you,
Bree

**cconnolly5** · 03-24-2014, 02:40 PM

Try as hard hard hard as you are able to not lose that sense of humor!

I too started this ride with my incredible sense of humor and have been hanging on to it for dear life these past few months! I am just about a year and half into this ride and felt it starting to disappear (the humor that is...wish it was the MS). After a few months of the "down & out" CRAP I can say I am starting to feel like some of my spark is fighting to get out WOOO HOOOO! Hold on tight...humor and laughter will help on the "not so good" days

**Pfaz** · 03-24-2014, 05:20 PM

Epstein Barr

Hi Bree-

Back in May 2013 I suffered from Vertigo. Was treated but never felt quite "right". I kept going back to my PCP and telling him how exhausted I was. At that time I never felt ill, just tired. He did some blood work and I had a very high white blood cell count. He told me it was off the charts high. I never had any pain or felt ill. He then did an Epstein Barr level and that too was off the charts.

Needless to say, even though my mono spot test came back negative he diagnosed me with mono. He repeated blood work every two weeks for about 6 months. My numbers were not budging. He also was doing other testing at that time to start ruling out other things. Everything was coming back normal.

Around November my numbers started dropping drastically and fast. While this was happening I started sleeping less but became extremely weak. I started having numbness, pain, spasms, and numerous other crazy symptoms. As my numbers dropped my symptoms came on like a freight train. I was choking while eating, falling down stairs, running into walls, etc.

I believe I have had this since I was a teenager. I have had similar episodes of exhaustion as long as I can remember. Strange "unexplainable" symptoms that came and went for years. This however was the first time I am not able to function and that has gone on for months now.

As for advice for the Epstein Barr- I have none. The Dr. Did not prescribe anything. I slept all the time and that never made me feel better. I don't believe I ever had mono. I believe it was the onset of this MS flare. There are numerous articles on Epstein Barr virus and MS being linked.

I wish I could be more help. I hope you get answers for your dad.

**J-Bo** · 03-24-2014, 06:43 PM

Things you wish you'd thought of doing sooner...

I figured out about a year before my legs started going that riding a bicycle is really fun. And then after a while, 75 year old women were whizzing past me on the bike trail. Still, I thought, "At least I won't have to spend any money on new brake pads since I never get up enough speed to need them." And I kept on going until I found that I could no longer achieve the minimum speed required to remain upright unless I was going downhill-and that would have opened up a whole new set of problems.

Anyone need a very gently used bike for cheap?

**bree2013** · 04-02-2014, 05:44 AM

Pfaz thanks for reply

[/QUOTE]
As for advice for the Epstein Barr- I have none. The Dr. Did not prescribe anything. I slept all the time and that never made me feel better. I don't believe I ever had mono. I believe it was the onset of this MS flare. There are numerous articles on Epstein Barr virus and MS being linked.

I wish I could be more help. I hope you get answers for your dad.[/QUOTE]

Yes, we'll just have to wait for my dad's appointment. I really hope the infectious doctor can do something to help him, but I'm thinking perhaps not and I am trying to prepare my dad for that fact -- but we'll see. Every day he feels as though he has the flu along with feeling hot; he keeps saying his head doesn't feel right. He has on / off choking on food also; he has to be very careful about chewing and not talking while eating. Of course the fatigue. My dad has always loved to exercise so when he says he has to push himself to go for his walk or doesn't go for his daily walk -- I know he doesn't feel well - at all!

Be well & thanks again,
Bree

**Myoak** · 04-02-2014, 07:22 AM

Hi Bree,

Just a note on EBV. Here are two supplements which some ms�ers take in hopes of diminishing EBV. Lactoferrin and Pantothenic Acid. I have no idea if they work against EBV in all people, some people, or no people. It would be a bad idea to overload on any supplement, IMO. And an especially bad idea if it wasn�t studied first. That said, these two appear quite safe.

http://www.ncbi.nlm.nih.gov/pubmed/22433582

The following link is a really, really good intro to Pantothenic acid:
http://www.gopetsamerica.com/substance/vitamin-b5.aspx

Of course, you know I�m going to suggest the Charcot Project thread to Pfaz. EBV is a prime subject there.

Pfaz, you make everyone smile. And, Bree best to your Dad, great fathers often appear in their children so I�m sure he is one. You are a wonderful daughter and a wonderful person.

**bree2013** · 04-02-2014, 01:24 PM

Originally posted by Myoak View Post

Hi Bree,

Just a note on EBV. Here are two supplements which some ms�ers take in hopes of diminishing EBV. Lactoferrin and Pantothenic Acid. I have no idea if they work against EBV in all people, some people, or no people. It would be a bad idea to overload on any supplement, IMO. And an especially bad idea if it wasn�t studied first. That said, these two appear quite safe.

http://www.ncbi.nlm.nih.gov/pubmed/22433582

The following link is a really, really good intro to Pantothenic acid:
http://www.gopetsamerica.com/substance/vitamin-b5.aspx

Thanks Myoak -- I'll look into this.

Bree

Announcement

Maybe I am just going crazy.

Maybe I am just going crazy.

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment