@ Rest Area 51 Paging ALL MS Newbies April 29 '12

[gomer]

Welcome to Rest Area 51... a special haven our your New MS family for newbies Dx'd w/MS in recent days or years and old-timers that are newbies at heart.

Take a well deserved break from your travels on the MSuper highway,pull into a nice cozy shady parking spot, Pitch a tent or just lay out a blanket and enjoy the crisp cool fresh air . Help yourself to fresh Cider and donuts. The camp fire is roaring in the open pit ready for hot dogs, marshmallows and smore's Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends, friends that understand. We have a virtual soap box, feel free to vent anytime.

Being a newbie can be as scary and lonely as being in limbo, Remember we are you family away from family. The BIG question answered means many more new questions and decisions. For those still working on, seeking a formal MS Dx, I highly recommend you check out MinivanMama's Limbo Island.

PLEASE.... Let us know how YOU, a member of our MS newbies family is doing.


Have a QUESTION? Please don't be shy........
The only dumb stupid question........is the one NOT asked.

Take care and hope all our rest area crew are doing well.

How was your Week?........
...Good I hope, Any Dr.apts tests etc?

What does April have in store for you?
....Any Dr. apts. tests etc.

Gomer Sir Falls--Lot

[journeyman]

journeyman/j-man/Dave here.

My symptoms start slowly and increase until I am incapacitated. The complete incapacitation last three weeks to a month. Then I wake up one day and I am 80% inproved. Within three days I am clear and up and running.

I told you that I was journaling my symptoms since the start of my last remission. In my journal I listed all of my known symptoms into categories. As I have been doing this I have become aware of so many more subtle symptoms that have earned a category of thier own. Each one carries a value of one point except the ones I consider major signposts. They get 5 or less determined by the severity.

Each day I tally the points. I will be starting to plot them on a graph. I had no idea that I had so much warning that a flair was impending.

I told you I would let you know when things began to change. First of all my number points for symptoms have been increasing. I think that, because of my self research, I saw this one coming earlier. The problem in the past is it would be on me before I knew anything was happening. My wife would spot it first before and tell me.

I have been warned by my wife that am going to have to foreit my car keys when she sees me making driving errors.
(she can be very persuasive at times.) This time I spotted the errors in judgement first. I lost my focus on the road at the wheel, when turning out of or into a driveway onto the highway I would mis-judge the curb ending and drive over the curve. I am very good at my following distances but now and following much closer. Thus, It must be time to turn over the keys. 90% of the time she is my designated driver anyway so it's not so painful.

I will try to keep you posted as long as I am able. Near the peak last time I had my spell I kept screaming because my laptop was making so many errors that I didn't want it anymore. I said I was going to give it away. She took it and said she would keep it for me. I stopped the paper because the itiots that write can't write so anyone can understand them. I was constantly asking my wife what the news anchors were saying because I couln't understand them (and I am a CNN-aholic.) So if i "wink" off ---I'll be back unless I destroy my laptop.

Dave

[alishape]

Nothing much...

It seems kind of strange to respond to an MS board with something as mundane as how my week is going, lol. I have so much on my mind, but I guess I should slow down a bit.

My week is going pretty well. I feel pretty good, fuzzy-brained but not too bad. I was diagnosed for sure about two weeks ago, and told to pick a medication. Until I started reading these boards, that seemed like a crazy thing for my doctor to say. This week I am waiting for some medicine to come in the mail. The people from betaplus keep calling me. I'm not sure why. I guess I do know why, but no one has every called me about medicine before this. I kinda wish they would stop.

Oh yeah, I'm about to gradute next weekend. I will have my bachelors from UMUC. Last semester I dropped out because I had an episode of optic nueritis, my first flare up. I was hospitalized and too scared to concentrate on school. I figured I should hop back on that horse and try to ride. So far I've been hanging on by my fingernails, but it over on the 11th! Woo hoo!

I have been thinking I need to find something to do with myself after work so I can stop sleeping so much. Maybe I can find some kind of volunteer work to do...something to keep me off the internet looking up MS or sleeping 12 hours a day.

[struck-a-nerve]

Dx yesterday...

...Well kind of on Monday, but met the neuro yesterday to go through everything and get the formal Dx. She did refer me to a MS specialist to meet with. She is completely comfortable with me coming back to her and she treats many MS patients. And I like her a lot so that is my plan. She is sending me to the best within our network and she also works with an MS specialist in her office. So I am feel comfortable and surrounded by people who can help me.

I have a random question. No one really ever talks about the VEP test...anyone ever had it? I did not, my MRI was very obviously MS (multiple lesions in the right places) and my CSF was positive (5+ bands).

I have MS 101 tonight. They gave me a bible of information on the meds available. I have not made a decision to do DMDs, but I am diligently researching LDN and my neuro said she would prescribe it for me. The worst part of all of this for me now, outside of the absolutely surreal experience that one month can change your life, flipping it upside down, is the medication. I don't medicate, for anything. So it is easy to imagine that this will be one of the hardest decisions in my life.

Other than that, I agree with Alishape, it is strange to give an update on a MS forum...who me, you want me to do that? But why? I am fine. Denial, right. I am not in denial, I just think it will take some time to get used to.

Sorry for the ping-ponging post....it is how my brain seems to want to work these days.

~Forever grateful for this forum and all of you people~

[valeriem2220]

Well after taking my first spill and dealing with vertigo off and on for a couple of weeks my neuro finally decided it was time to talk with me about Avonex.
He told me to let him know at my next visit in 6-8 weeks whether I wanted to try it or not.
I had decided that night already that I was going to do it.
He wanted me to really mull it over as he said it MAY work or it MAY NOT work, and told me the percentages and all. So as he said...was the percentage of it working worth the side effects.
By that evening I had decided ...if I don't try it then it absolutely has a 100% failure rate. I have to give it a chance and hope it works for me.

I am also now starting the procedure of getting surgery set up for carpal tunnel in my wrist. I have been in severe pain with this for a month now. Very little sleep because the pain has been waking me up after about 2-3 hours of sleep. I have been miserable and just want this pain gone. I don't think I have been this excited for a surgery in my life...
Hopefully work and workmans comp insurance cooperates with me now. I am not wanting to fight about it.

[gomer]

How R U Crew?

J-man Dave.. sorry about ya loosing da wheels keys to mama. On the other hand, Tampa can be a viscous place to drive (ya nuts!)

One time years (8+) ago, One day on a road I found my self in the middle of an intersection (So of Atlanta) and confused but did not understand WHY? So know the feeling. I have been doing much better in that are in recent years.

BTW Jman..did not make it down this spring. Multiple factors, budget, couple needed car repairs and broken ribs/kidney failure piled up on me. Got word yesterday my place down there was broken into, back door condition unknown. So when I do make it down, have no idea what I will find, or should I say not find. Great neighbors NOT!


alishape...It seems kind of strange, that describes MS very well, in a nut shell if you will. When my MS neuro suggested an DMD/CRAB option I asked about Copaxone, (after researching them) and so far we are both happy with MY choice.

S-a-nerve....... I am glad to hear you are so happy with your doc, many of us, myself included have had a hard time finding docs we can LIVE with.

EVP...yep I had that one, FAILED it and it supported my already formal MS Dx. It's easy and painless, just a bad hair day with the electrodes placed with goop. (no big deal).

Valerie... Starting a MS med for me meant for the first time I was FIGHTING my MonSter. I think it has slowed my MonSter a little and allowed my body to recover just a little.

Now Rest Area CREW.. take care and be careful while enjoying the spring weather.

Gomer Sir Falls-a-lot

[BeneathTheLies]

This week has been pretty good to me so far. I got my first new car on Monday so i'm very excited about that. Other than that my MS hasn't been too horrible for me. My fatigue is starting to hit me but I think part of that is working 50+ hours a week. I'm wondering how I did it before. Not too much going on which I'm glad to report. I hope everyone is doing okay.

[alishape]

Hello again

Hey Struck, I never heard of that test, VEP. I know I had a spinal tap, but the doctor was not very forthcoming with the results. I think the internet has made medical professionals choose sides. Some of them will tell you anything that might be relevent to your situation like you have an md of your own, while others tell you the bare minimum as if they are afraid you'll google them wrong. I was mostly worried about whether or not I had cerebral syphilis, ( I had a wild and crazy youth). But it turns out I did not have that. If I ever find out about those tests and bands and everything, I'll come back and let you know.

Well, I was waiting for my medicine to come in the mail, but now I have to switch to something else. My insurance co said they won't pay for betaseron, only copax or rebif. I have some research to do. It looks like most people here choose copax.

J-man, it's nice that you have love in your life. I have a long term girlfriend. She says that she wants to stay with me and stick it out. I don't know though, I feel kind of ashamed of myself. A lot of crazy and embarrassing things keep happening to me and it seems this situation can only get worse. I hate for her to see it. I want her to think that I am strong.

Oh, I have been trying to think of good things to help me stay upbeat and yesterday I sat in the sun for a couple of hours with NO ZINGS! I love the sunlight. I've never been a big fan of heat anyways, so hopefully on nice days I can enjoy the sunshine on my porch with some delicious crown royal.

[journeyman]

Update - I think I'm on my way. "Sparky"

This is a poor day. Around noon I started getting the "electric knitting" needles through my left hemisphere of the brain. I feel like I'm about to give birth.

I only get the needles like a couple a month. They started today about 5 or 10 min. apart. It is now almost 7 pm. and I am getting them more rapidly and sometimes two together. All of them go through the spot that showed up on the MRI in the left hemisphere of the brain.

Some go into my left ear. If you draw a line from my left ear up through my temple to the top of my skull they are falling along that line. All going half way through the side of my brain to the middle. So far I've had 35 since noon.

I am using spell check on this and am making many corrections. I am talking and then go blank for about 5 seconds. I am starting to stutter. (just had two more) I am also getting optic neuritis. I am also drinking a glass of wine and so far it seems to be settling down.

Even though I know what is happening I will admit to you that it scares me knowing I may be out of it for awile. Even after four years since dx. My wife is with me and she know what to do if it progresses. I took my medicines a little early also.

I will try to keep up this format so that some of you will know how it progresses for me. I hope that this is a learning tool for some of you what RRMS is like.

"Sparky" will monitor this I am sure. If it is inappropiate here it will be moved or removed. I just thought It might help somebody.

Dave in mental limbo
Probably will be back shortly.

[journeyman]

P.S. Journeyman

I was bbrb "born" t be a researcher. Luf to watch thing happeng in the brain. Even it it si me. Dave

[journeyman]

Much better now.

I'mf not sure if it was the medication or the two glasses oe oer the anti-seiszure medication or the combination Bit I'm not in pain now. Going to bed.


I'm not correcting these. Just letting them flow as is.
Dave

[journeyman]

P.S. Dave

as geOver-all I had 52 needle shoks vefore they stopped. Thankfully it did not progress. I ave heard that in RRMS each time they get worse. So far this has ben the worst.
Dave

[journeyman]

Good morning from Dave

Slept poorly last night. No "knitting needles" during the night that I know of. I ended up with 52 stick yesterday and gave up counting. Too distracting but stare at TV and go to bed. Fortunately they were not incapacitating but is probably an Aura of things to come.

Only two this morning. My church is only a few blocks away so I don't have to drive very far. Will take back roads. I do blood pressures at our homeless feeding program. The ones with dangerous B/P we try to get into the free Judeo-Christain Clinic for treatment. So many won't take their meds or can't afford them. They are walking time bombs.

I did voluntary medical missionary work to Central and South America. Now my Docs won't let me go anymore and for good reason. So this is at least something I can do to give back to my community. When things get bad I have to take the time off. They all pray for me and are so happy to see me bacc so there are benefits for both of us. My regulars inquire about my health every Friday morning when I am there.

No matter what we are going through there is always something we can do to help other's. This forum has saved and supported me mentally, physically and emotionally. This is one more thing that I feel I can do for others and the Newbies which I was four years ago.

Thank you all for you support. I hope that I am helping to support you in your education re. the MonSter.

Dave "Better" today.

[meeegun]

struck a nerve,

my heart really goes out to you. last september i was in the same spot. i remember all of the uncertainty, feeling like everything i knew about myself was different, that the "back pain" was not just back pain. it all felt really hopeless and scary. i had a similar experience in that i went from thinking "i am healthy" to "i am chronically ill" in the blink of an eye. totally skipped limbo land.

i never take meds either. and for me its a hard choice because i have a hard time believing that they are actually working. that is really great you have found yourself a good neuro team. maybe i can ask you again in a few months for thier names because i am considering a move up to your neck of the woods in the next year or so.

this board is great, everyone is very caring and friendly. there is a lot of information out there, try not to overwhelm yourself with the possibilities. remember too that whatever medication you start on, you can switch later. its good to know what you are getting in to but don't think its a permanent choice, you can always change.

[journeyman]

Dave - a short one for

No other knitting needles. Great day. Must have been some kind of flair. Scared me!
Dave