@ Rest Area 51 Paging ALL MS Newbies April 22 '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.

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]

KUDOS TO GOMER

I had a blog once and it was a bear to keep up. I have to compliment you on all the work, effort and compassion you put in this forum.

I invite our family Rest Stop 51 to add to this note because you deserve it.

P.S. If you decide to comment remember I know the real you.
Love, your buddy Dave

[journeyman]

Where the heck is everybody?

I can't believe this forum has set empty this long with just you and me.

Are you all on some Caribbean vacation or what.

We need people to make this forum work. Don't sit out there and wait for somebody else to go first.
Dave

[Min]

Kudos to Gomer

I'm not a newbie by any means, have had this "lovely MS" for many many years, way before the diagnosis critereia they have to day so didn't know I had it until 2004 at age 63.!!!!
But would like to add my thanks to Gomer for all the information I have gleaned from him since I have been on this site and mostly for his wicked sense of humour, just love it.
So thanks Gomer and carry on with you postings, on any forum, I always read yours!!!

Love and thanks Min.

[Kraheera]

Sorry guys. I've gotten a bit more quiet since offending someone. I'm still here, and I still read a lot. Just not feeling the greatest and not wanting to expend the effort to be p.c. when I write.

[journeyman]

KATHLEEN

I offend people everyday. It you want a list I'll send it to you. We need everybody sharing here. Don't let someone person stop you. I'm sure you have heard that before.

I'm an ex-Psych, ED, CCU, ICU Recovery RN.C. Plus an ex-military EMT and Medic. A high school Health Science teacher. A Central and South American Medical Volunteer missionary. Yikes ! I've offended people all over the world.
All that over thirty years before I was actually dx'd.

Not to mention on here. I even offend GOMER occasionally.
We need your input. To heck with that person who hasn't put on their big person pants yet.

Dave Tampa, Florida

[BeneathTheLies]

I'm back

I took a much needed vacation from thinking about MS the last 2 months. Not that i really had time to think about it with everything else in my life going insane. The bad part was when I started thinking about it again I had to start the whole grieving process over again in a sense.

I've kind of gone off the deep end recently and stop taking my meds except the copaxone. I did miss a week of that but shh, I got back on it. After nine months of the daily shots coupled with my emotional health on the fritz i just couldn't do it. I got a guilt trip from my mother though and started right back up. But the anti-depressant, provigil and baclofen have all gone bye bye in an attempt to feel something again.

Now all I feel is anger and sadness. I'm currently very depressed and it has nothing to do with my MS. I'm currently in doubt about the whole MS crap now that I've found out that my lesions are disappearing. I don't meet the McDonald criteria if I don't have lesions in both my brain and spianl cord, right? It just such a crapshoot to think about. I was fine with the whole you have lesions here and here and here and that's why you feel the way you do. So now the lesions are gone but I still feel like total crap.

I just needed to vent to people that understand I guess. And you guys are the only ones that truely understand the complete and utter frustration this disease brings. I haven't even made it a year yet and I'm already losing my mind. I don't want to think about what it'll be like in the future.

Anyways, it's good to be back. I missed this place.

[Kraheera]

Pissed off. Pissed off is definitely me lately. My mood has been swinging from one end to the other, I constantly wrestle with feeling like crap, my kids' energizer bunnies seem to have gotten an injection of crack, and I am so tired that just looking at them makes me want to go back to sleep.

And because I can't seem to catch up, they get bored. They get bored, they start getting into trouble. It is this never ending cycle, and I can't even yell at them about it.

Then I've got a friend who just up and disappeared, and the only reason I can think of is maybe the MS thing freaked her out. So now I get to wrestle with the idea that people are going to dump me like last weeks trash because this disease scares the **** out of them, which just makes me feel oh so great.

Honestly, I have gotten THIS close to throwing my hands up and giving up. I'm just tired of all this crap. It hasn't even been a year, and I'm worn down.

[struck-a-nerve]

Hello! I am new here as of today. I will join your newbie list, taking a deep breath and diving in. However, I do not yet have a dx. I think we are really close and so does the neuro. In the mean time I am trying to learn as much as possible about the truck that hit me.

I am confused and frustrated, as it sounds I should be and most others are too at this point, just waiting to find out. This is the most opposite experience from that which I am used to going through. I am always in control, understand the whole process, execute. I have been robbed of that.

But to find folks out there like you gives me solace. I happy to meet you and thank you for your support.

[meeegun]

feeling frustrated with the american life lately. overwhelmed with grad school. hit my wall 2 weeks ago and since i haven't fully recovered. when i think about my life all i can think about is how i am failing at it right now. i am failing as a partner, as a friend, as a student, as an employee. failing at all of it! it should NOT have to be this way to get through school!

today i looked into switching over my health insurance to the school plan so that when i cut down my hours to per diem at work i won't be uninsured and won't have to pay nearly $1000 for COBRA each month i was willing to give it a shot, even knowing that i would likely lose my doc's and have to start all over again with a new neuro...until i inquired about prescription coverage. $500 a YEAR. that's it. wouldn't even cover half of one month of medication. useless!! how is this legal?!

if you know someone who thinks that universal healthcare is an infringement on thier rights, you can refer them to me: a gainfully employed, non drug-addicted, intelligent, and hard working person who has had the misfortune of being handed one ****ty diagnosis. then that person and i can have a nice chat about whose rights are being infringed upon here.

[journeyman]

Ya'll. I am a talker so this is long but I think it will give you some insight.

Dave here.

First of all looking back over the four years of my RRMS which is not a lot of experience but the worst was the limbo. Knowing something was wrong but what. My family dies from cancer and heart disese. I worked in a cardiac unit and was pretty familiar with that and knew it wasn't that. But the cancer scaired me.

We were sitting in the neuro's office where my primary referred me. My wife was with me and while sitting in the waiting room my wife picked up a pamphlet on MS. After a couple of minutes she handed it to me to read. I had every symptom.

I had those symptoms for twenty years. Docs kept saying "Hmmmm, that's interesting." when I took my symptoms to them. Like my left thigh was so numb that a needle shoved into the muscle caused me no pain. Twenty years !!

I was a Medical Missionary to Central and South America at the time. I dearly loved studying culture, cultural medicine, and giving back to the world all the blessings that I had recieved. It was my passion. My group would see over 800 patients in five days. I had to give it up. I grieved more over that than the dx. MS.

It took two years to heal. When I finally embraced my MS. as if it were the loss of a limb and moved on gradually the pain of losing my passion the fear and anger of my MS began to fade. Please don't get the idea that it was easy.

I have been seeing a psychiatrist for fifty-one years for depression, suicidal attempt, ADHD, two psych hospitalizations for suicidal attempts and thoughts, reading and writing disorder. I am thankfully only seeing a psychiatrist for medication management and have been stablized for ten years.

Through all of this the best thing I can give you as a medically retired psych. RN. Yes through all this I got my education and practiced for thirty years. Is to take time for you, relaease the horror of your disorder, find an outlet, (I volunteer at our church's feeding program taking blood pressures and medical direction. I have also taking up painting. Only my wife and daughter see my work but it is a great outlet.

When my MS. acts up, which is usually lasts three to six months and leaves me out of reality and unable to speak. My comprehension is zero. So if I disappear i'm in it. I will be back because this forum has been the greatest help.

Just know we love you for who you are and this is the place to get help from people who are there with you. Feel free to vent. Gomer and I can take it. That is why he set this outlet and information forum up for us newbies.

God speed, bless and comfort ya'll.
In His hands doing what I am able.
Dave, Tampa, Florida

[Lisasberry]

Newbie, not newbie - but here for sure now

Diagnosis was yanked around a bit, but a new T-3 MRI nailed it, along with positive LP. Very aggressive PPMS at age 55. I have gone from skiing like a mad woman on blues and black runs in March 2011 to using and arm crutch and walker. Yesterday was my first day on the walker - hated it.

I am starting my third day of steroid infusions in a few hours - it seems useless. The first day I had flu like reaction and horrid fatigue. Yesterday I had a few energized hours but my body was still the same old spastic uncooperative self. Insomnia but not with energy - with fatigue. Is this a bit abnormal? I'll wait and see what today brings.

You name the symptom - I have it. Easier than listing them all!

Lisa
Oh yeah - was depressed most of the night. Saw so many in the infusion center - saw my future...sucks.

[Hazelsparkey]

My son has been diagnosed with RRMS

Hello everyone,
My son who is 32 was diagnosed two weeks ago with RRMS! We are still in shock and numb. The Doctor said he had to many lesions to count on his brain! She also said that he has two large active lesions right now.

The symptoms that led him to the Doctor were vertigo, nausea and a tremor to his right hand. My son also had to go for an MRI of the cervical and lumbar of his spine. We don't know the results of that yet. Next appointment this week we will learn the results of that.

It's all very scary and overwhelming. I want to help my son all that I can. I am not sure where he is at with this diagnosis. It feels like he doesn't want to talk about it and it seems as though he is pushing it away.

I ask him everyday how he is feeling and he says he feels fine. No more episodes of vertigo. I am not sure I believe him.

The Doctor wants him to have a 5 day course of Solumedrol. This will take two hours each day in a Doctor's office. My son doesn't know how he can do that with his work schedule. He says there must be another way. I think his Doctor should give him a note for a week off from work so he can get the medicine he needs. Also this way he would be able to be home if there are any side effects. I am going to suggest that to the Doctor when we go to the appointment this week.

What would happen if he didn't get the Solumedrol? I would greatly appreciate any input.

I am so glad I found this website. It is packed with good and helpful information. God Bless you all.


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

[struck-a-nerve]

Solumedrol

Hazelsparkey, I am waiting on dx now. I have been off work since the middle of April. I am physically unable to do my job right now and my doctor was more than happy to fill out my disability paperwork and I am sure yours son's doc would write a note for a week.

I did Solumedrol and while it can affect people differently it really did make some of my symptoms better within a couple days of getting it. The side effects of them are not fun, but they subside quickly once the treatments end. I was having what they think was ON and terrible dizziness. The steroids cleared that up as well as getting the cog fog under control (not completely gone). I did not have any relief from any of the numbness or the hug that I am experiencing, but I recommend he get them.

I am 29 years old and though I have had symptoms for over a year, I never, ever thought that I had anything but work or sleep related numbness. My world changed wholesale on April 12th when my PCP looked at my MRI and said this looks like classic MS, go to a neuro. I second your sentiments that it is scary and overwhelming and I can only imagine how my family and husband feel.

I am glad you want to help and support your son. Just be there for him. If we does not want to talk about it for a while, give him space and stay patient. If we wants to talk about it all the time, listen and support. He has to grieve. Just like you do and we all do it differently. I got on these forums only a handful of days ago and already the value of this network is overwhelming. Stick around and get the outlet you need while your son works through this.

I hope the best for your son and for you and your family.

[Hazelsparkey]

Thank you

Thank you struckanerve for your kind and caring advice. I jusy found this site yesterday. I so love it. It has such a wealth of information.

Yesterday my son said to me, "It's my own fault, I should have followed up with a Doctor" This broke my heart to hear this from him. He said that because he had an episode when he was 18 that effected his eyes, the Neurologist at the time thought maybe MS but did not diagnose him with MS. He only had one lesion in his brain at that time and one symptom.

He told my son to live his life and not to dwell on it. Well that is exactly what he did. If he had symptoms we as his family never knew. I was however concerned about his depression and fatigue that never seemed to go away. I contributed it to possibly being hereditary as his Father battles with the same. I told my son not to blame himself, it's no ones fault and besides that blaming is not going to do any good. I told him he needed to take this bull by the horns and fight with everything he has. I

was glad we talked and I think I gave him some strenght along with huge doses of love and support. We celebrated his birthday yesterday and showed him how much we love him. I will be with him every step of the way!

God Bless you all.


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