Rest Area 51 Calling ALL in early yrs of MS Dx May 23 2010

[gomer]

Welcome to Rest Area 51... a place for newly diagnosed (or newbie at heart) in recent days or years, please join us. We are MS newbies, yep I am a newbie as well, helping, sharing and supporting each other as we venture our version of the Twlight Zone as a new, or relatively new MS patients. Please feel free to visit Rest Area 51 often, even daily, even if only to vent. Our VENTbox is always open!

This is YOUR rest Area so pull into a nice shady parking spot and enjoy the fresh air. Feel free to share your ideas, experiences and support to your fellow newbies. We have a deep dark SNAKE PIT for us to throw doctors or anyone deserving of a good bite. We have a VENTbox for anyone to use anytime, we ALL need to vent once in a while.

Relax, you are among friends & family that understand. Take a nice walk along our soothing creek, grab a picnic table or blanket, maybe take a cat-nap IF you see Lady Cats-A-lot is purring around here somewhere, give her a nice purr, she knows ALL the best shade spots.

[I]NEW to Rest Area 51.....[/I]please introduce yourself, we want YOU to feel WELCOME to your MS family away from home. Please feel free to vent, ask questions etc. I try and remember to add a green circle w/r-arrow to make our Rest Area thread title to make us easier to find.

As MS newbies, we are in strange situation, I know after getting the formal RRMS Dx after being in limbo, I felt LOST and in a new what's next limbo of sorts. That is where only another newbie, or someone relatively new can really understand Takes one to understand one!

KNOWLEDGE is POWER!........ We all, newie or old salt, need to learn all we can so we can put up the good fight against our own MS. The more we know, the better we can understand our MS, I say "our MS" because MS can be very different for everyone. On the other hand someone else here will likely have some experience dealing with issues and questions we may have.

The one and ONLY dumb stupid question, is the one NOT ASKED! So, if you have been holding out on asking a question, it will be dumb and stupid, till YOU ask it! Don't be shy, we are a no embarassment zone!

How was YOUR Week?.............. Did you have any doctor apts or tests this past week?

What does YOUR week ahead look like?..........

My past week....Well my FamDoc canceled my Wed apt. He took his wife to the hospital, false alarm on the expected baby. Yes even doctors have families, have kids even family medical emergencies etc. I am now scheduled to see him in the morning, Monday, unless something comes up or pops out....lol He has TWO girls, so he wants (does not know yet, by choice) a BOY..

Well almost a week into the Copaxone injections, I started last Tue. My wife has been doing great at helping with them. Today my baby (Adult "baby" now & first to bless us with a grandchild), did my Copaxone.....OUCH! He started laughing and the neeedle was twisting all over the place,, that HURT. The sting seems ot be getting lighter, not as bad as the first shot. So far no injection side effects except the itching & burnning, both of which have subsided some, except for the needle wisting bit.

Glad to see we are getting great participation. Ra Ra RA51 TEAM! Feel free to tell us more about your family etc (your other family, that may or may not get it). .

GOMER

[KoKo]

Hi Gomer

Just stopping by Rest Area 51 for a quick break (hope you all don't mind).

Hmmm......it is nice here. Got a cranberry juice cocktail? Thanks!

Well, gotta get back to my responsibilities.

Take care,
KoKo

[gomer]

Hi KoKo.......

...Nice to have you visit........

Well KoKo...if this Rest Area looks and feels a bit like Limbo Island.... there is a good logical explaination. I came here last summer/fall and found MiniVanMaMa's Limbo Island. I have learned a LOT in those months there. Limbo Island was a warm friendly place where one could not only learn from others but share experiences with other people in the same/similar situation.

Then..BINGO..all of a sudden in late Jan..I was no longer in Limbo, you have RRMS, said the doc... and thus I was in yet another strange situation, that of being a newbie as far as a formal Dx (but not Sx wise what-so-ever). It was as if I had fallen off Limbo Island or been set adrift w/o a clue as to what would be next, and NO WHERE to go?

I made a lot of friends on Limbo Island and MiniVanMaMa had made Limbo Island so nice, it was like leaving home, but with no place else to go. I was glad to be out of Limbo, but now I was like a homeless MSer.

Then my Dawson's fingers decided to type (can brain lesions actually TYPE?) So Rest Area 51 was concieved and posted. MiniVanMaMa's Limbo Island was a perfect example and had become the blueprint for Rest Area 51.

Why Rest Area? with all thse tests upon tests (some rather uncomfortable and/or scary, and doctor appointments, who would not need a break/rest?

Why the '51'? Many of us went through a period, some years if not decades of denial (by doctors) seeking answers to our multitude of Sxs. (ever ehar of Area 51, (the govt secret yet not secret site called 'area 51' they always DENIED existed?)

Myself, I had complained so loud and clear, "something else was WRONG, just "no showing up on tests" reads my VA record from the shrink dept over 2 decades ago. So I gave up even trying, and suffered thru many a 7734 (upSIDEdown & backwards).

Then over 2 decades later a new eye doc opened the MS can of worms. Long story short, it ended up being the VA that gave me the FORMAL RRMS dx. Brain MRI = more Dawson's fingers than digits on my hands, spinal MRI = more lesions, EVP = optical nerve damage, LP very high MBP level etc etc Needless to say the Sx history was long documented...........lol. Jut too bad they would not listen or do proper testing a couple decades ago, before my basic mobility went south, (part-time chair now).

Hey KoKo, How was your ice cold cranberry juice cocktail?

Feel free to drop in and say your state's middle name ANYTIME! OK KoKo from oHIo

GOMER No longer a GOMER, but keeping the title (I earned it the HARD way)....lol

[KoKo]

Hey Gomer

Thanks for your story, and the history of the beginnings of Area 51 - very interesting! Folks can easily transition from Limboland to the Rest Area 51, and not feel lost. (Kinda like going to a half-way house after being let out of prison? just kidding!)

The cranberry juice cocktail was d-e-l-i-c-i-o-u-s.

Thanks for the hospitality. I'll definitely be back.

Keep up the good work

Take care,
KoKo

[JudySz]

Hi everyone,

Cranberry juice sounds good. I have been drinking Arnold palmers, lemonade and iced tea mixed, but it has been so hot, and I have been drinking soo much, I could use a change in drinks. Arnold palmers almost gone, think i will try carnberry juice today.

Nothing doing this week, except to pick out my new glasses. Went to eye doc last week and I do need new glasses. I am pretty excited cause I was getting tired of old ones, and tired of not being able to do my crosswords puzzles.

AC is broken, so I am waiting for a call back from repair people. Have told landlord twice, nothing.....so I am just getting it fixed myself. DH cannot stand to see me so miserable in this heat, so he said we would just get is fixed. I hope it is not too much money. I will send landlord the bill, but who knows if he will reimburse me. At this point, i do not care....I just want cool. If I still have no ac tomorrow, I am going to the movies to cool off.

Hope you are all dealing with this heat better than I am.
Have a good week all.

Last week was too busy for me.....had vet appt for dogs, my eye doc and on the other days, friends stopped over. I love to see peole, but I am not answering my phone this week. It was too much........One friend who I used to work with is very young and after we went to lunch, he just would not leave. i do not think they realize us old people need our rest. Oh well, i am thankful that friends stop by to visit, I just with it would not all have been the same week.

JudySz

[bballmom]

Hi everyone...hope ya'll had a good weekend.

I saw my neuro on Thursday and since I have no new symptoms, I don't go back until January for another MRI. WooHoo! I hate MRI's. So, I guess the Avonex is working for me so far. I'm still not back at doing my own injections yet. It's so strange to me that I was doing fine but now, I can't do them. My lovely neighbor who also has MS is more than happy to do them for me. LOL She's on Ty and I tease her that she misses "shooting up" because she's way too excited to do mine.

Oh well, I hope everyone has a good week.

[fuzzywuzzy2]

Hi, Im new to area 51. Dx aug 09. Almost one year now.
So much has changed some good some bad but Im learning to roll with it!

Right now just finished a cuppa tea..with milk(half english..lol) My kitties are fed and i am just trying to relax before my big week ahead.

I should know by Friday if I get to stay at my current job or be forced to demote.

Im prepping to deal with the "mean girls" I work with.
I am dealing petty well with my MS and I am always learning something new.

It is nice here, area 51..who would of thought.

Hope all is good with everyone

[BigA]

Hi Everone. I just wanted to say hi and that this week I feel great except for stiffness. I'm learning to distinguish between a relapse and some spasticity, lol.

Getting to know me, getting to know all about me... I still have so much to learn about what's serious and what is not. I'm driving my nurse and doctor crazy reporting a new symptom that lasts 24 hours, i.e. "My elbow was in pain for 37 hours and didn't used to be."

But my arms are getting worse in terms of itching and stiffness. I can still type so far.

[MBC3mom]

Hi,
Gomer, I'll have a cranberry juice cocktail too! Sounds like Judy needs plenty of ice - don't know how she is surviving without AC!

My gyn recommended having my vitamin D tested, so I asked my pc. Turns out it is very low so I am now taking megadoses and hoping it will improve my energy levels. Don't know why my neuro did not suggest it. I do have an rx for provigil but insurance is dragging their heals about paying.

This week my dd has her first ballet recital. I know it will be too cute) I am stressed about work because I have fallen behind during this recent flare and we have a board meeting this week.

I am also stressed trying to get my mother into a nursing home. She is in stage 6 Alzheimer's and also has end stage emphasema. My dad has been caring for her at home (they live several hours away and refuse to move - I cannot uproot my family, not to mention there are no jobs in that area, so trying to help long distance and not doing a very good job of it!) I know it is very hard for my dad to accept that he cannot take care of her anymore, but she has become psychotic and does not know anyone. Police and rescue squad have been called to the neighborhood several times when she scapes the house and tells neighbors he is trying to kill her. She requires constant vigilance, never sleeps through the night, and lately has begun tearing up any paper she can find and attempting to eat it. I'm really hoping I can find a place for her soon. My dad has begun to lose weight from the stress and lack of sleep.

[JudySz]

ac fixed. I am now $300 poorer, but I feel soo much better. I am going to send the bill to landlord and hope he pays it. It was a wire in the thermostat. If he does not, at least I have my air. Dh agreed that is was worth it. He does not like heat either, and I cannot function without it.

JudySz

[Portia]

Winding down

Hi everyone. Just a quick note to check in.

I just started reading Falling Down Laughing: How Squiggy caught multiple sclerosis and didn't tell nobody by David Lander.

This is my last week of school, so now I'll have more time to read.

[roo613]

Big A I'll joing in the sing-a-long "Getting to like you....getting to hope that you like me..." One of my favorite musicals; I played trumpet for it two years ago.


Judy We had to drop $600 on van repairs this week. It stinks, but it does make life easier!

MBC I'm sorry about your mom. That is very hard on everyone. My grandmother has Alzheimer's, and it is hard to watch.

Fuzzy Welcome to 51. Just ignore the mean girls at work. Although I know that is easier said than done!

As for me, not much to report. I am feeling good other than the shocks I get when I look down. And those don't hurt...just annoying. PT is going well, and I definitely feel stronger.

My older two boys both made the all-star baseball teams for their age groups, so we begin the never-ending summer ball season tonight. Thankfully, we live in a supportive community, and their coaches are trying to work with us--like scheduling their team practices at the same time, so that we are only there for 2 hours instead of 4 (when they are back to back).

The only bad thing is that I started trying to potty train my youngest one today.....and I am already ready to quit! Seriously. I do NOT have the patience for this. I have had a zillion people offer to help me in any way that they can. What do you think they will do when I look at them and say, "Great! You can take my two-year-old and potty train her!!"

[bballmom]

Roo: Glad you're feeling better and congrats to the boys! On they potty training...my 2 year old just started going on her own one day. Try not to stress about it too much. She'll go when she's ready. Girls are much easier to train than boys.

[Dulcinea714]

Two days of headaches

Hi everyone,
I've read all the posts and glad there are lots of us. We will certainly beat limboland. I spent the weekend in bed with killer headaches, but they have subsided now.

Last week I went to the opthamologist and had field vision test, which told the doctor that I had a blind spot in my right eye (I could have drawn identical test results if they had given me a crayon and a piece of paper). The good thing is that my vision is still 20/20 even with the blind spot. The damage to my optic nerve is not active now and time will tell if my vision will come back.

I went to the OIF/OEF clinic today to see my GP. Funny how they assign us vets to clinics that treat vets of specific conflicts. It was a good visit, my GP is a nurse practitioner and she saw that I am set up for a bunch of appointments and says it looks like they are taking care of me, but not to hesitate in calling the clinic if I have any problems.

I have my voc-rehab appointment with a VA counselor this week to see about my options for training or education or whatever. I am still waiting on my disability retirement from work and my appeal to upgrade my VA disability rating. Disability retirement should come through within the next month or two; The VA will decide when they decide.

This is the last week of school for my daughter. She will start 6th grade next year in the new 6-12 magnet school(the county's first foray into a magnet high school). Her current K-8 magnet school is becoming a K-5 school, so she did not have to compete for a spot in this new school. She has some happy and sad feelings about the move.

Today is a good day and I am hoping for a good week.

[BigA]

roo,

OMG, you have a 2yo? You've got your hands full. At least she can cuddle with you and be a human heating pad.

Looking down? Is that a new symptom for you? I fear electric shock looking down at papers on my desk. Mine's worse than it used to be, before just legs, now legs and arms. Wow. No word from my Neuro - you know, sensory things aren't important, they're just a little bit of torture to remind us.

I used to play trumpet and have one in storage for my son to start with in a few years.

Have you started to the Rebif yet?