Rest Area 51 Paging ALL MS Newbies Feb 13 '11

[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 and newbies at . Being a newbie can be as scarry and lonely as being in Limbo, The BIG question answered, means many more new questions and decsions.

If you have not taken a advantage of our Rest Area 51 lately, PLEASE grace us with your presence and let us know how YOU, a member of our MS newbies family is doing. For those who stop in and say hello each week, thanks.

Hope everyone is had a great week!

Pull into a nice cozy shady parking spot Pitch a tent or just lay out a blanket and enjoy the crisp cool fresh air . Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends that understand. We have a virtual soap box, feel free to vent anytime.

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

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

My Week......A good week on balance (puntended).
Went out to dinner with kids and grandson for our 38th aniversary. Earlier that day my care package from overseas with my generic (no script needed) sub for Armour thyroid meds came. So I am going back on thyroid meds. Still freezing but I am sleeping better at night. Dr. F/F refuses to deal with my boarderline (subclinical?) hypothyroid isse, at least TWICE, hence my going around normal proceedure.
Funn-E tho, he has been very adamant about treating my subclinical cholestrol with statins, which have PROVED to be detrimental for me and has noticed the problem..... go figure. FlipFlop..FlipFlop..FlipFlop..FlipFlop..

Tuesday I have my PCP apt w/Dr F/F. The right leg issue can wait, take a back seat to the Left Leg bone tumor issue and unrelated statin use. He should also have a update report back fromt the MS clinic. Lots of important issues this office visit. I know he is NOT happy about my stopping the statin, but it was having a major impact on my limited walking and stability. Hope he is not totaly FLIPed out.

What does the new week have in store for you? .......Any Dr. apts. tests etc.

Gomer Dr. of, Been There, Done That

[KMCangel00]

First time at the rest stop....

Looks like I'm the first one to pull over.... :P

Officially received my diagnosis of MS on Wednesday. Tomorrow's my first day back at work since I got the news (I had previously requested the rest of the week off from work as I had a feeling that I would need it to just kind of hang out, relax and work this all out in my head). I'm not looking forward to going back.

I have issues with my job, anyway -- it's incredibly stressful, at least for me. So part of my hesitation is probably just that it's been nice to have that added stressor go away for a little bit...

The biggest reason I think I don't really want to go back isn't even that I'm afraid of the pitying stares from co-workers (it's a relatively small office and things get around, like it or not), because everyone who has knowledge of my situation has been completely supportive and there for me.

I think I don't want to back because it makes *this* REAL. I officially have a chronic, life-long disease and my future is potentially even more unpredictable than it was before I was diagnosed. It officially becomes something I have to deal with every day for the REST of my life. Yikes.

I suppose this is how everyone felt at one point when they were diagnosed. I mean, I've known that MS is the culprit in my head for awhile now. I thought that when I was actually diagnosed I'd breeze through the *acceptance* phase. I wasn't expecting the realization to kind of hit me like a ton of bricks!

I have a c-spine MRI on Wednesday to see if I have any spinal lesions in addition to the 7 brain lesions that were seen on my Brain MRI from 12.23.10. Hey - that actually leads to me to a question for everyone. I don't really have anybody other than a mild acquaintance with MS, and I spaced and forgot to ask my Neuro the other day - are 7 lesions a lot? I don't really know because I have nothing to base the number on. Be honest - I'm really *ok* with my diagnosis and if that's a whole lotta lesions, just tell me

I'll be sure to let everyone know how the c-spine MRI goes. I always write such long posts -- I'm truly sorry!

[gomer]

WELCOME KMC..........

SEVEN..is that your lucky #?...........lol

I would guess its neither a low or high count. I have about that on each side in the form of dawson's fingers, plus spinal lesions. I have had MS Sx since my teen years and on SSDI since about 1985. I have heard of people Dx w/MS with few or no brain lesions, some have only spinal lesions etc. On thing you will learn about MS is everyone is different and so is their MS.

I had problems for decades, was told my neuro problems were from diabetes, but of course they just assUme'd that, no testing. I tried to tell them "something else" was wrong, but they sent me to the shrinks, thinking it was all in my head. In a twisted sort of way they were half right, I also have spinal lesions..........lol

Twenty three years later, SUPRISE (not) the VA Dx'd long standing RRMS. I now get my MS care at the VA and on Copaxone.

It was a new (non-va) eye doc that n 2009 for the first time raised the MS question about my diplopia I have had since 1964 (18 yrs old). So as far as FORMAL MS limbo, I spent less than a year.

I like the way you broke your post into paragraphs, but the text is a bit small & harder to read. Many of us have vision issues.

WELCOME and please pull in often.

Gomer Dr. of, Been There, Done That

[JudySz]

Glad there is still a spot for me. Welcome KMC....Weare a good group here, hope you come back often.

Wego out alot when she is home. Maybe some shopping and on Monday watching the older grandkids, then taking her to airport...Shr brings her dog, so I will have 3 little guys around for the weekend. I am so excited just to see her.

Happy V Day Everyone. We have no extra $$, so we are not doing anything, but that is okay with me. Maybe next year.

JudySz

[journeyman]

Yippe yay

I was assigned to a Social Worker by my ins. co. If you remember they told me I couldn't continue with Dr. Krolczyk, my neuro. He was a great Dr. and I didn't want to lose him. Second they told me that my medicine, Rebif, would cost me $2,000.oo. Then they got it down to $1,000.oo.

This afternoon the Social Worker called to tell me that Dr. K. had been approved. The Rebif also had been approved at my old rate. So all is well and the sun is shining on me. Oh the other thing they told me that all I had to do each year is get my Rx and I would be OK'd for each subsequent year. Yeah...

Gomer you take care of yourself and don't take any crap.
I really don't need to say that because I know you will take care of yourself. We all are keeping you in our thoughts.
Dave
J

[gomer]

Hey J (J-shine?)

Px line working again, how long?

I am going in LOADED for BEAR tomorrow (??)

Today I filed an adverse statin drug reaction with the FDA, it's in the mail. The form came today, I filled it out and made a special stop at the mall to mail it. A psycological bit of amo to let them know I am serious about the issue.

I had in the past said one day I would come wearing a suit. Well tomorrow will be close, I have my shirt, tie and suitcoat (too small) I will wear as a sports coat. It's my favorite suit, new 31 years ago. This way I will be dressed about on par with the doc, maybe better. Another thing to set the TONE I hope. He only wears a half-windsor, I do a TRUE full proper windsor.

Tomorrow could take off in ANY direction. My hope is we are both civil and he at lesast takes me serious about the statin issue along with the other issues.

Glad to hear the news.

So J-man.. when do get to see you Dr K agains and get back on the Rebif express?

Judy....There will ALWAYS be a spot here for you. (we'll just expand if needed)


HAPPY alentines to all

Gomer Dr. of, Been There, Done That

[jworth]

Hi there. I am newish....I joined when first diagnosed but just never posted. Felt pretty good for awhile, then really really bad, good again etc. Now feeling in a downward spiral.

Reading here the last couple of days has been emotional for me. I have realized I have really been in denial about my MS. I have read so many things and realized, that the things I have been experiencing are normal for this disease. It feels such a relief to see others with all this going on.

And yet, it makes me really sad too. I have been telling myself for at least a year that it's going fine and I am really not "that bad." But I am tired all the time, in pain ALL the time. And that ruse is wearing me down.

Over the last few days I have just been overwhelmed with trying to do it all. Denying that I am really in trouble here. So, reading here is helping me face it, but sort of making me face it at the same time.

Don't know if that makes any sense at all.

My story--I was diagnosed in 2002 but had no lesions and had only had one relapse. So after a few months, I stopped taking the meds. Went back 8 months later and had another MRI, still no lesions. Dr decided she had been wrong. Yippeee. Went along for 5 years feeling fine. Then, in Jan of 07 I was hit with exactly the same symptoms. Darn it. I knew what it was. Had an idiot Neuro who kept telling me he was sure it was nothing big. Yeah, what's YOUR definition of big?

Diagnosed beg of March, 2007 had three lesions on my brain, spinal fluid off etc. Started taking Copaxone. Took it every day for three years and never got over the pain of injection site reactions. Then, had a billing dispute with my neuro, as they had billed wrong for my PT...wouldn't see me blah blah blah. Haven't seen him since Aug of 09. Don't have a current script. He decided half of my issues were weight related anyway. Yep, I am overweight. Really hard to excercise when you feel like you got run over just going to Target. Not sure what to do there.

Had an MRI in Dec ordered through my reg Dr. Have three spinal lesions in addition to brain lesions now. Not too bad for three years in between.

Need a new neuro. My reg doc won't write the scripts for Copaxone.

I have three kids. I homeschool the younger two and that's good. Can't imagine having to have them somewhere at a certain time each morning. When I need to, we do our work in my bed or on the couch. They are old enough to get their own breakfast so that helps.

I would like to work a bit as we could use the money, but I dont' know what I could do. Can't stand for very long so retail is out. Can't get up every day so home daycare which I'd really like to do is out. As most jobs would be. They generally frown upon people calling in tired.

So that is me in a quick nutshell. thanks for being here!

[roo613]

Hey everyone! Sorry I've been MIA lately, but I just haven't wanted to connect with my disease (if that makes any sense).

Although I still just have MINOR issues, I can easily pretend I'm not sick. These are symptoms that I probably wouldn't really notice without knowing about the MS.

Anyway, my Copaxone is finally due in tomorrow, and the nurse is coming on Wed. for training. I am sick to my stomach with dread. I am frustrated that I have to go back to facing the fact that I have a disease. And I am second-guessing even trying another dmd.

Sorry for being a downer. I am normally a do-what-I-have-to-do-without-complaining person, but i'm just not feeling it right now...

[journeyman]

Doc. G.

The company got the Rx from Dr. K already and they should be sending it Overnight any day. Hope it is soon. I already have been off the meds 9 days. I won't see the Dr. K until April so......

Now you know the good news so her's the bad.

You know when you have an accident you don't feel too bad but when you cause it you feel like crap.

I was on a ladder yesterday and was three steps from the top. I thought I was three steps from the bottom. So when I stepped out onto what I thought was the bottom there was only air. I crashed onto the concrete. I hit the foot then the knee and then the butt.

The butt was OK because there is ample of that. I hit the front of the right knee just below the knee. The first thing I thought of was the neighbors outside. My pride exploded. I rolled under the hedge so no one would see my stupidity. Then I thanked God for not hitting my head. There is little left up there.

I got up and went inside and washed it. Then bandaged it, wrapped it with an Ace wrap. Went to be and propped the knee. Applied a heat pack and went to sleep. All the good things a nurse would do.

This morning I prepared for knee pain. There was none. BUT...when I landed on the knee I think I forced the leg bones back straining the tendons and ligaments on the back side of the knee. Perhaps tearing something. I will give it a day with some ibuprophen and rest. If its still bad tomorrow I will go to the Doc or Er.

See what I mean. I don't need accidents. I can manage just fine on my own.

Thinking of you.
Dave
J

[bballmom]

Hey gang! It's been a while for me...no reason really...just been trying to get out and keep busy.

Roo: I too find myself trying to keep this disease out of my face. It's easy sometimes because I don't really have any symptoms just yet. I do find comfort here though so, I come to the boards to get "close" to others like me. Kinda a catch 22 you know.

Anyway, no appointments for me this week. Just getting out enjoying the sun with my 3 year old.

[gomer]

Hi everyone.......

Tue....Had my famdoc apt.... went OK.

FINALY Dr. agrees I can NOT take statins!

Did get a referal to an ortho for teh bone tumor issue. See him this week. Same doc that did surgery on my shoulder twice in 07, 2 falls two injuries same shoulder, same side as my weaker leg.....figures.

Wed.. went to a dinner/speaker (copaxone) met a nice local neuro, and learned of a local monthly MS support group that meets at the local hospital. So tomorrow I plan t check out the support group. Never been to one so nto sure what to expect.

Welcome to all new RESTers.. sorry I am a bit tired.

Gomer Dr. of, Been There, Done That

[journeyman]

Doc.

I'm so glad that your Dr. lived through you. Especially since you went in loaded for bear. Keep us posted re. you next appointment.

I have a built in "walk group." My wife's Jazzercize group. They are willing an able. I have written several people re. how to register and to get needed paperwork. Does anyone out there know how or who I need to contact for the Tampa Walk this year. I think I may already be to late but I want to be armed for next year.

Glad to have you back Doc.
Dave
J. Low 80 degrees here today. The heat intolerance will be here soon

[gomer]

Jman...I agree, I would hate to loose him, but I ws prepared to move on IF needed.

Jman I did that air from ladder trick back as a teen in a wharehouse. I had new glasses.

Wobbler... Glad to see U taking a REST....puntended. How is the copaxone going?

Roo..its FUN to pretend... IT's just that reality will, sooner or later bight back.

BBmom..... Don't look in a looking glass, ya might se MS there.

Jworth..... Remember it could always be WORSE, so you are at least half right. Chin up!

KMC... looking forward to you verbouse post for next week... I start a new thread usually on Sunday. so make sure to pull off the MSuper hwy and take a Rest.

Gomer Dr. of, Been There, Done That

[Mamamamama]

I think I don't want to back because it makes *this* REAL. I officially have a chronic, life-long disease and my future is potentially even more unpredictable than it was before I was diagnosed. It officially becomes something I have to deal with every day for the REST of my life. Yikes.

I'll be sure to let everyone know how the c-spine MRI goes. I always write such long posts -- I'm truly sorry!

This is EXACTLY how I feel and although I'm mostly okay, I still get moments where this hits me like a ton of bricks.

I started the daily injections of Copaxone last Sunday and I realized that some part of me feels like like there was a mistake and that it was a fluke thing that has gone away forever.