Rest Area 51 Paging ALL MS Newbies Sept 26 2010

[gomer]

Welcome to Rest Area 51... a special haven or your New MS family for newbies Dx'd w/MS in recent days or years. If you just came from MiniVanMama's Limbo Island, you should feel at home here now that you have your MS Dx.

NEW Newbies corner feature this week for new newbies. We the people (with MS) here are REAL, no mistake about that, but our features here at Rest Area 51 are virtual. We are not perfect, we are human and some have cog-fog and or neuro issues that cause us to make more typos or spelling errors than most, so we UNDERSTAND, because we share a common thread called Multiple Sclerosis and also deal with it every day.

While our shady parking spots ,cool stream, community room and snake pit etc are not physically real, any more than we have a real Soap box, you CAN REALLY come here to post and vent, your venting WILL be read by many, and some may respond! While no one is here 24/7, we come and go from day to day, remember someone WILL at least read and see your post. You are NOT alone!

Our Snake Pit is a virtual place where you can vent and share your bad experiences about calous docs, nurses or even insurance reps. Venting is something we ALL need to do from time to time. It helps us deal with tough bumps in or road of life, and we have it tougher than most people. Just keep in mind, no matter how hard we may have a day or week etc, there is always someone who has life even harder than we do.

We have some here not only MS newbies, but also new to using a web forum like this. MS world and Rest Area 51 is a safe place (even if only virtual) where you can come, post a vent, ask questions, by all means feel free to ask ost ANYthing. There are no dumb stupid questions here, which is as it should be. AS you come and vist us from day to day, you will become more comfortable here at Rest Area 51 and MSworld.

Pull into a nice cozy shady parking spot Pitch a tent or just lay out a blanket and enjoy the cool fresh air. Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends that understand.
The only dumb stupid question is the one NOT asked.

How was your week? Good I hope.
............Any Dr. apts etc?

What does this week have in store for you?
...........Any Dr. apts etc.

Doc Gomer

[ShanZro]

first time stoping at the rest stop

Good Morning!

This week was pretty good. Thursday was really my only bad day, I had horrible pain in my legs that would not go away. Woke up with the pain and went to bed with it that night. Thankfully Friday morning was a lot better.

No doc appts this week for me. I dont see my neuro again until December (As long as I dont have a relapse or problems)

[Portia]

I go back to the doc this Tuesday and Wednesday for my monthly drug trial visit. I'll be having the usual: blood work, MRI, pulmonary test, and basic evaluations of sight, balance, coordination etc. I always look forward to the visits, but this time I don't want to go because I want to stay home with my daughter. We haven't had much time together at all lately. It's wearing on me. I don't know what I'll do in a few years when she goes away to college.

Yesterday was the homecoming dance. She and her boyfriend had a good time. We both work today, but I'll get a couple of hours with her later. Because of our schedules this week, I won't really have time with her again until Friday evening.

[journeyman]

P.S.

Regarding the Orlando MS/Sea World Conference. I have posted a note re. the date of the conference. J.

[journeyman]

Dates ! Dates ! Dates !

The "Day of Discovery" MS conference in Orlando/Sea World is:

December 4th, 2010
J.

[roo613]

Portia I am already dreading thinking about the teen years an college----and my oldest is only 9!

Journey I wish I could go to that Day of Discovery, but it is too far for me!


I go to the neurologist on Thursday. I am anxious in one sense because I want to know what direction we are going to go with my treatment. On the other hand, I don't want to do any more treatments! I just want to continue to enjoy feeling good!

It is amazing how I can pretend I'm not sick when I'm not having to give myself shots, and I'm not having issues with the MS! I have gotten so much done in the past week, and I still feel awesome! I figure that any day now, I will begin a flare and come crashing down to reality!!!

In the meantime, I will continue to stay busy.

[BigA]

Funny - there are two views. One is that you'll walk around thinking you don't have MS until one day BANG and you'll be worse off in 10 years than if you hadn't taken DMDs.


The other view is that the medecines don't really help in any case and that you'll just suffer those 10 years.

It sounds like you don't have many symptoms, which is fortunate.

[Shandi]

I wanted to share that the DH is having his Copaxone delivered on Wednesday! Shared Solutions picked up our co-pay as long as it was under $1000 - we had about $375 to spare

Now the fun will begin when I have to schedule his training. Our schedule is so screwed up that I don't know when we are going to get it in. Since DS is insulin dependent, we know how to give shots!

DH has been a little more herky-jerky at night time so I wonder if something is acting up. Not interfering with his sleep...just something *I* notice.

[Jenny3838]

This is why this disease is so crazy. In the beginning you were having so many relapses. It's been awhile and you have been relapse free, thank God!! You are off all medication. If you were still on the Rebif after you had been switched from Avonex they would have said you made the right decision switching from Avonex to Rebif. They would have said look no relapses, the Rebif is working. But you are on nothing. Have you changed anything else? Are you on high doses of Vit. D, or are you on a different diet?

You are the perfect example of why I don't believe any of the drug studies.

Portia I am already dreading thinking about the teen years an college----and my oldest is only 9!

Journey I wish I could go to that Day of Discovery, but it is too far for me!


I go to the neurologist on Thursday. I am anxious in one sense because I want to know what direction we are going to go with my treatment. On the other hand, I don't want to do any more treatments! I just want to continue to enjoy feeling good!

It is amazing how I can pretend I'm not sick when I'm not having to give myself shots, and I'm not having issues with the MS! I have gotten so much done in the past week, and I still feel awesome! I figure that any day now, I will begin a flare and come crashing down to reality!!!

In the meantime, I will continue to stay busy.

[ollieopps]

Good Morning All -

I agree with Roo (and others) that this disease is indeed crazy, feeling frisky one minute and not good the next. I also agree that we take that knowledge and make the most of the good.

I had a couple of very good weeks. My ongoing symptoms at this point is a headache that comes and goes, and has a range from anoying to bad. I also seem to have the head thunderbolts, they come at random times and are horrible, then followed by the residual headache. I see the neuro in November and will discuss at that point. The odd part to me it that I can't seem to look 'up' with my head. I can look down now, but can't seem to move my head to look up without feeling like I'm going to fall, or a very sick feeling. So I don't look up. Seems odd to me...but then again there is no normal.

It's been a rainy and to some gloomy couple of days. I really like it. If I was just sitting on my porch watching it ...

[JudySz]

Welcome Shan

Portia..I miss those days. Enjoy them while you can. Now girls and their friends are scattered all over the world. So glad for Facebook so I can keep up with them and stay in touch. I do have one dd close, but I don't see her as much as I would like to cause she is so busy with work and her family. Both of my girls call as least once daily, and for that I am thankful.

Roo, I know how you feel. I was off Rebif for almost 2 mos and I felt so good. Back on now cause doc and dh talked me into it.. It is okay since I did not have many side effects, but I forgot how just crappy being on meds makes me feel. For this, I am paying almost $300 a month???

Rebif luncheon tomorrow. Free food, so I will be going with dh. If I learn anything, I will post and let you all know.

Rainy dreary day here in OH. Think I will finish getting witer clothes out and put away. Have a good week everyone.

JudySz

[gomer]

Welcome Shan........

JudySz...kinda wet dreary here as well.

ollieopps.... Same here, about looking UP. My first neuro apt after officially landing in MS limbo had me rolling my eyes up, then he backed off, I guess he saw I was getting close to ppukeing all over his shirt.......LOL. Realy I almost did). I P/T I was taught to look in a direction with my eye before moving my head etc. It helps I thin a little, but still have to be carefull.

Jman.......... Dec 4 does not seem doable for me...

Doc Gomer Doctor of Been There, Done That.

[roo613]

This is why this disease is so crazy. In the beginning you were having so many relapses. It's been awhile and you have been relapse free, thank God!! You are off all medication. If you were still on the Rebif after you had been switched from Avonex they would have said you made the right decision switching from Avonex to Rebif. They would have said look no relapses, the Rebif is working. But you are on nothing. Have you changed anything else? Are you on high doses of Vit. D, or are you on a different diet?

You are the perfect example of why I don't believe any of the drug studies.

It is also why I am so skeptical. I started the Rebif right as I had my last flare. I have been flare-free since then. I had to go off the Rebif just over 4 weeks ago, so I guess most docs would say the Rebif was sucessful. But I also have to wonder if I wouldn't have gone into remission on my own... Since I have only been DMD-free for 4 weeks, it remains to be seen if I will flare or not.

And NO, I am not taking ANYTHING. I am not taking Vit. D or any supplement, nor have I adjusted my diet at all. I was afraid to take anything until my liver enzymes are back to normal, so I am footloose and fancy free right now!

[journeyman]

Doc.s and Insurance

I have my Neuro on Friday. I think I need an MRI after my last "paralysis / weak leg episode / flair." He is pretty good about that sort of thing. Also he wanted to talk to me about CCSVI this appointement. Wish me luck with him.

I was on my Humana dependent insurance with my wife's policy. That was supposed to stop May 1st. and my Humana gold plus - Retiree ins. Well if you remember I had to change all my Dr.s. Well yesterday

I had to call Humana for some technical thing. Get this - they told me I was still on both insurances until the end of the year. UUUUUUGGGGGHHHH ! All that hell with meds and changing docs. for nothing. Sorry - I know all of you have had to go through all of this crap. But this was a major thorn in my side. I could have gone to the ER with my problem etc. I'm major P.O.'d right. now.

I guess this should have gone in the vent box but its too late now. Just wish me luck for Friday.

I expect a page long letter from the Doc. about M.S. and expectations. Go ahead - I can handle it - I'm a big boy. OK - just between you and me go gentle on me - I'm really delicate as you well know.
J.

[JudySz]

Rebif luncheon was really good. Good food, nice presentation..no real new info, but it is good to hear about things so you know you are not alone. It is also good for dh to hear to help him understand my fatigue.

After it was over, dh went to bathroom and one of the guys that was there was laying on the bathroom floor. Dh and another guy helped him up into a chair and restaurant mgr. called paramedics. He was okay and talking but we think he did hit his head pretty badly when he fell. Dh has never seen me really fall, just tumbles and I usually just fall onm y butt, scared him a little.

JudySz