Rest Area 51 Welcoming all in early Yrs of MS Dx (4/12/10)

[gomer]

Welcome to Rest Area 51 a place for newly diagnosed in recent days or years, please join us. We are MS newbies helping, sharing and supporting each other as we venture the uncharted waters as a new, or relatively new MS patients. Please feel free to visit Rest Area 51 as often, even daily, even if only to vent. I am On The Go and updating from Lakeland Fla via WiFi….


This is YOUR rest Area so 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 all need to take Rest Breaks from the MSrat-race/maze and all that goes wth it. Pull into a nice shady spot, take a walk along our soothing creek, grab a picnic table or blanket and join us. Feel free to 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.

We have a VENTbox near the main building if you feel like venting. Inside we also have cold drinks and a snack bar, coffee and donuts as well.

NEW to Rest Area 51.....please introduce yourself, we want WELCOME you to your MS family away from family. 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.

How was YOUR week?
My past week was quiet, maybe too quiet??? Did you have any tests or doc appointments last week?

What will your next week bring?

GOMER on the Go w/GoGo update........
Well I made it back from my road trip..TIRED of course. I hit the Cherry blosum fest in DC on my way down. Got a few 3D pictures and did more than usual thanks to my power scooter. Worked great almost got stuck once in the soft grass along the main reflecting pool. Only took me THREE HOURS to park, after getting past the grid-lock. Quite a crowd, in DC, but well mannered. I was told they had over a million visitor for the fest last year and even more this year.

My new prism glassed did not come before my trip. I was worried the new stronger prisms might be UGLY, but they are not as bad as I feared. Nice not having to look thru vertical blinds (fesnel lenses).........lol

On the way back I got bit of a late start, then hit some sotrmy weather and trafic jamb, so I was late getting up into No Ga so did not have the pleasure of meeting either MiniVanMama or Lady Cats-a-lot. I did get to meet w/Fred and his son and helped them with a porta-studio equipment issue etc. overall it was a good trip. While in St Augustine I picked up a couple Jolly Roger(pirate) Flags for my scooter.

I don't have much going on right now doctor wise. Come the end of April the quiet before the storm is expected to give way to a flurry of Neuro (maybe meds), and labs for my FamDoc and others and more doc apts. I am hoping I at least get the option to start something to fight this MonSter. I think 3 months is a long enough delay after being given the formal Dx. Maybe I should jsut be glad the VA is doing anything at all..........(based on past experience) but as usual claim one thing and do another. They say once DX'd meds should be started right away, guess who is definning what right away means.

CATS-A-LOT........still no seen or hears so much as a purr frm ya, hope you are doing OK?

MiniVanMama..nice to gab with ya while on the road.

GOMER RRMS Jan 26 2010

[roo613]

Glad you had such a good trip! I am so wanting to go somewhere. We did go to 6 Flags in Atlanta for a day last week, but I want to go on a "real" trip!

I am in a full-blown flare. I woke up Friday and my entire right side of my body is numb, can't feel heat/cold, and certain areas hurt to the touch. I also have a 6 inch area on my left arm which feels like it is on fire, as well as two fingers and the palm of my hand. Oh and the exhaustion is the worst. I had so much I wanted to do this weekend, and I didn't have the energy! Today, my coordination is off, and my left leg is a tiny bit weak. We'll see how this progresses.

To be honest, I think mentally I had convinced myself that I was going to be ok with this disease. I think that I really felt like I wouldn't have another flare for a long time, etc. and that I could manage the day to day weirdness. But this is making MS a reality for me.

I have an appointment with a new neuro in a week and a half. We'll see how that goes!

As for life, I don't have time for this flare! I am playing trumpet in a college prodution of the musical "Man of La Mancha." We have three dress rehearsals and then 3 nights of performances this week! My kids have ball games, and I am wrapping up the semester with my classes, so I have to grade papers, create finals, etc.! Oh and the Bible study that I am leading started last night, and goes through the end of May. So I have stuff to do with that!

Anyway, I am trying to maintain a positive attitude. The weather here is going to be beautiful this week, and I am determined to finish the spring-cleaning at my house. It may not happen, but I'm going to try!

[mjan]

Welcome to Rest Area 51 a place for newly diagnosed in recent days or years, please join us. We are MS newbies helping, sharing and supporting each other as we venture the uncharted waters as a new, or relatively new MS patients. Please feel free to visit Rest Area 51 as often, even daily, even if only to vent. I am On The Go and updating from Lakeland Fla via WiFi….


This is YOUR rest Area so 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 all need to take Rest Breaks from the MSrat-race/maze and all that goes wth it. Pull into a nice shady spot, take a walk along our soothing creek, grab a picnic table or blanket and join us. Feel free to 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.

We have a VENTbox near the main building if you feel like venting. Inside we also have cold drinks and a snack bar, coffee and donuts as well.

NEW to Rest Area 51.....please introduce yourself, we want WELCOME you to your MS family away from family. 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.

How was YOUR week?
My past week was quiet, maybe too quiet??? Did you have any tests or doc appointments last week?

What will your next week bring?

GOMER on the Go w/GoGo update........
Well I made it back from my road trip..TIRED of course. I hit the Cherry blosum fest in DC on my way down. Got a few 3D pictures and did more than usual thanks to my power scooter. Worked great almost got stuck once in the soft grass along the main reflecting pool. Only took me THREE HOURS to park, after getting past the grid-lock. Quite a crowd, in DC, but well mannered. I was told they had over a million visitor for the fest last year and even more this year.

My new prism glassed did not come before my trip. I was worried the new stronger prisms might be UGLY, but they are not as bad as I feared. Nice not having to look thru vertical blinds (fesnel lenses).........lol

On the way back I got bit of a late start, then hit some sotrmy weather and trafic jamb, so I was late getting up into No Ga so did not have the pleasure of meeting either MiniVanMama or Lady Cats-a-lot. I did get to meet w/Fred and his son and helped them with a porta-studio equipment issue etc. overall it was a good trip. While in St Augustine I picked up a couple Jolly Roger(pirate) Flags for my scooter.

I don't have much going on right now doctor wise. Come the end of April the quiet before the storm is expected to give way to a flurry of Neuro (maybe meds), and labs for my FamDoc and others and more doc apts. I am hoping I at least get the option to start something to fight this MonSter. I think 3 months is a long enough delay after being given the formal Dx. Maybe I should jsut be glad the VA is doing anything at all..........(based on past experience) but as usual claim one thing and do another. They say once DX'd meds should be started right away, guess who is definning what right away means.

CATS-A-LOT........still no seen or hears so much as a purr frm ya, hope you are doing OK?

MiniVanMama..nice to gab with ya while on the road.

GOMER RRMS Jan 26 2010

WELCOME back Gomer.. you were missed~! Been waiting to hear how your trip was going.

Just curious.. if a Vet had Cancer..would they made them wait over 3 months for medications??

Jan

[mjan]

Glad you had such a good trip! I am so wanting to go somewhere. We did go to 6 Flags in Atlanta for a day last week, but I want to go on a "real" trip!

I am in a full-blown flare. I woke up Friday and my entire right side of my body is numb, can't feel heat/cold, and certain areas hurt to the touch. I also have a 6 inch area on my left arm which feels like it is on fire, as well as two fingers and the palm of my hand. Oh and the exhaustion is the worst. I had so much I wanted to do this weekend, and I didn't have the energy! Today, my coordination is off, and my left leg is a tiny bit weak. We'll see how this progresses.

To be honest, I think mentally I had convinced myself that I was going to be ok with this disease. I think that I really felt like I wouldn't have another flare for a long time, etc. and that I could manage the day to day weirdness. But this is making MS a reality for me.

I have an appointment with a new neuro in a week and a half. We'll see how that goes!

As for life, I don't have time for this flare! I am playing trumpet in a college prodution of the musical "Man of La Mancha." We have three dress rehearsals and then 3 nights of performances this week! My kids have ball games, and I am wrapping up the semester with my classes, so I have to grade papers, create finals, etc.! Oh and the Bible study that I am leading started last night, and goes through the end of May. So I have stuff to do with that!

Anyway, I am trying to maintain a positive attitude. The weather here is going to be beautiful this week, and I am determined to finish the spring-cleaning at my house. It may not happen, but I'm going to try!

So sorry my dear.. but ..did you call your doc and let them know? Maybe steroids to help you now??

Did you go on any rides at 6 Flags?? Reason I ask is a doctor told me while in the hospital..that my bean bag neck pillow has a switch for vibrating and as much as he liked the pillow too.. warned me not to use the vibrating part as that is bad for the brain.

Anyone heard of this.?

I didn't know you were just diagnosed.

Hope you feel better soon.

Warmly, Jan

[gomer]

VA & Cancer

..Actually I was in oncology follow-up at the AA VA back in the mid-late 80s. I had had surgery in '82, poorprognosis but did well, surgery was a sucess and no spread. I did get GOOD VA care back then with their oncology dept, the rest was so so at best.

I tried to tell them SOMETHING else was wrong besides the C and diabetes issues. I felt like a dead man walking and the best they would do was take B-12 shots and sugested I use a cane. They did send me to their shrink dept. I hoped they would realize I was not just complaining or joking. They (shrinks) noted I was "adamant" something else was wrong,, just no showing up on what testing they did do. They all but said it was all in my head (funny now, considering all the dawson's finger I have, not to mention C-spine and T-spine lesions) and that I was not depressed.

When I did have a suspected possable recurrance in '92 there was no delay in the surgery/biopsey.

I did see my GP at VA and she said NO to prednisone untill I was seen back in the neuro dept because she did not want to make my diabetes worse.....BIG DEAL? My last a1c was 5.9 GREAT and I know how to figure my own insulin doses, basal, carb ratio and correction factor.

In short the VA is a mixed bag of good, bad and even some ugly. If I ahve too many issues with VA on the MS treatment I will try and transfer to U of M........ Problem is for now the VA would be more affordable if I go on Copaxone. The VA charges me $24/90 days of anyhting, even baby asprin that cost less than half that for a whole years worth, and since I have medicare part-D drug coverage generics are FREE, outside the VA anyway.

CATS-A-LOT!.........R U OK? I have not seen or heard from you lately. You are usually msot always on the prowl aroudn here.

GOMER RRMS Jan. 26, 2010

[roo613]

So sorry my dear.. but ..did you call your doc and let them know? Maybe steroids to help you now??

Did you go on any rides at 6 Flags?? Reason I ask is a doctor told me while in the hospital..that my bean bag neck pillow has a switch for vibrating and as much as he liked the pillow too.. warned me not to use the vibrating part as that is bad for the brain.

Anyone heard of this.?

I didn't know you were just diagnosed.

Hope you feel better soon.

Warmly, Jan

Yes, I did go on a few rides, but I couldn't go on many because I am hyper-sensitive to dizziness and motion sickness.

I hadn't heard that, but I'm new to all of this!

[bspotts1]

...new to area 51 and message boards for that matter...didn't even know what to put it the title block before typing a message. Hello there...my wife was dx 1 year ago...neuro would not classify as to type but we feel she has PPMS...she is 60 and never has had a "relapse", just steady declince in ability to use her left leg. She did avonex for 6 mos and is currently on copaxone...none seem to be helping but i knopw they're only supposed to "slow progression"...so how do ya measure that! Her neuro has suggested a 2nd opinion / evaluation at mayo clinic in Jacksonville (we live in Sarasota). I have been to Mayo websites (FL & Minn)...Fl has one listed MD staffer, Elizabeth Shuster and Minn has 10 MD staffers listed.

I don't know if quantity means anything but it seems that Minn is the place to go if we go anywhere. I guess my question to anyone is have you had any experience with either Mayo Clinic??? We also have an appointment with a local MS "specialist", Dr. Donald Negroski (or are we not supposed to use doctors names?) that is supposed to take place before Mayo...local neuro said not to cancel Mayo appointment. Seems like lots of stuff going on but I guess that's the way it is with MS..

But it is a beautiful day here in Sarasota.

thanks - brad

[roo613]

...new to area 51 and message boards for that matter...didn't even know what to put it the title block before typing a message. Hello there...my wife was dx 1 year ago...neuro would not classify as to type but we feel she has PPMS...she is 60 and never has had a "relapse", just steady declince in ability to use her left leg. She did avonex for 6 mos and is currently on copaxone...none seem to be helping but i knopw they're only supposed to "slow progression"...so how do ya measure that! Her neuro has suggested a 2nd opinion / evaluation at mayo clinic in Jacksonville (we live in Sarasota). I have been to Mayo websites (FL & Minn)...Fl has one listed MD staffer, Elizabeth Shuster and Minn has 10 MD staffers listed.

I don't know if quantity means anything but it seems that Minn is the place to go if we go anywhere. I guess my question to anyone is have you had any experience with either Mayo Clinic??? We also have an appointment with a local MS "specialist", Dr. Donald Negroski (or are we not supposed to use doctors names?) that is supposed to take place before Mayo...local neuro said not to cancel Mayo appointment. Seems like lots of stuff going on but I guess that's the way it is with MS..

But it is a beautiful day here in Sarasota.

thanks - brad

Welcome Brad! I have not experience with Mayo, but I think I would definitely go to both, and see what answers you get! I am all about being an informed patient, and I think you and your wife will feel better with more than one or two opinions.

[minivanmama]

Hi Gomer

Just drooped in. Cats a lot is fine. I talked to her on Thursday night. She has had lots of company and has been taking the steps to start her meds.

She is just busy but will be back very soon.

Hope you are having a good day. I did enjoy talking to you on your trip. Take care and try to behave.

(((hugs)))

[gomer]

Thanks MvM........

I was getting worried a-lot 'bout Cats-a-lot........

If it takes so much and so long and steps to start meds, my gosh..I THOUGHT (blown fuse?) it was jsut a simple SC shot daily...?? Maybe I am a bit jaded since I have been doing self inflicted shots for decades, my current routine calls for 5 shots/day. When I am home my wife usually shoots me once in the morning and I do the rest.

I have been a bit tired myself, sleeping too much? I got hot and awoke about 4am this morning, so I was up a couple hrs earlier today, then made up by cat-napping.

So far I like my new prism glasses, not as bad/wierd looking I feared with teh prism increase. Better than looking thru vertical blinds of Fresnel lenses.

DOCTORS-CLINICS.......... IMO I think it matters more what kind of relationship & repore you can establish with a doctor, not so much as to how many any clinic has. Finding a GOOD doc you can COmunicate with well and who LISTENS to you/your-wife. Numbers do not always equate with quality. IF/when you find a good doc, keep'em, they are very hard to find and that goes double with a MS doc. It took me more than a couple docs to get anywhere myself. one problems with VA is that its seldom you get to see the same doc more than a couple times.

GOMER RRMS Jan 26,2010, No meds option so far?

[JudySz]

Hey Gomer

Glad you are back. Sorry I did not catch up with at the cherry blossoms, but dd really wanted to go the nationals game that night. That and the fireworks wore me out, glad I did not try blossoms. Saw them last yr. Aren't they beautiful.

Busy week for me, but feeling good. Older dd has baby shower on Sat, so between the DC trip then coming home for the shower, I have been really tired.

Good to have you back.
JudySz

[roo613]

My flare has just continued to get worse. Yesterday, I finally shipped my younger two kids off to a friend, and I slept all day. In between my naps, I also finally had a prolonged pity party.

I think that I had convinced myself that I was not going to have any more flares, so this has finally solidified it in my psyche that I DO have a very annoying disease that will flare when I push it. So I laid in bed and felt sorry for myself because I didn't have the energy to move.

So today, I have a little more energy, but my other symptoms remain, and today I added hand tremors.

I am hoping that I can hold out until next Wed. when I see the new neuro. I REFUSE to go back to the other one.

Sorry to whine. I really try to remain a "do what I have to do" person, but I needed to whine to some people who understand.

[doggiemom]

hi all

Glad to hear from everyone on this thread.
I had my 1yr check up this week, MRI showed no active lesions and he said it appeared the previous ones look somewhat smaller. All great news! I'm trying to be happy about it but maybe the Rebif is making that harder than it should be. Since my first "flare" i haven't had a full blown relapse of the numbness but I'm stuck in this hot flash hell of sweating every time i leave direct air conditioning. Of all the things that could (still could) go wrong with my body I'm upset about the sweating. I just can't get happy. Only taking 50mg of anti depressant... trying to stop whining not doing a great job at it!

[gomer]

Oh Doggie-M............that's OK you're in OK I C!

Just keep trying, in the mean time try chasing dog bones......lol

IMnsHO (ns=not so) there are 2 ways to go around the go-round of life, one is being a sour kitty, an that AIN'T no fun! I must admit I have seen some very rough times over the decades, so I can understand your getting down.

Any time you feel the need to VENT, just drag your self here and blast away..........we understand the need to release a little (or a lot) of pressure.

Most of us in this thread are still wet behind the ears from getting the NEWS we had MS...is that like hitting the lottery? (or yrettol) But, then that is the reason for the Rest Area 51 threads, so us MSnewbies can share our experiences and frustrations as newbies in formally dealing with MS. I say 'formally' because many of us had to deal with MS related issues for many years before getting the FORMAL Dx of actually having MS.

I am still recovering from my spring venture and cherry blosums in DC were a wonderful sight indeed. My GoGo scooter served me very well (did not strand me)...did almost get stuck in the soft grass along the LONG reflecting pool. Besides making it possable to cover more ground w/o my limiting gumby stix putting a nix on me, I find I don't get near as much nausea when using the scooter or power chair (at home). I am still getting used to the idea and using them. At least I can still walk, just limited these days.

A sidenote here......I see the LimboLanders are far out-posting us.........My question is, are we gonna let them beat the pants off us in that aspect? Now don't be shy! I may bark but have yet to bite anyone here and I think Lady Cats-a-lot has been too busy napping in the trees somewhere around here to cat-scratch anyone.

Remeber we are all in the same boat and can in a unique way understand others relaively new to the MS label, so we should be able to understand each other better than anyone else...RIGHT? (I hope so) Takes one to know (or understand) one.

GOMER On the Go on my GoGo

[MS TOO]

MS and now maybe Graves disease!

Hello All, Well officially Dx'd with MS Oct 2007 after nearly a decade of limbo land. I have a sister with Graves disease and after talking with her and reading more about it, I realized that I had some of the same symptoms but thought they were MS related. I made an App't to see my Neuro as I am having more MS symptoms and asked if he thought I should have labs done. Lab work is back and now I'm waiting to hear from the Endocrinologist. The labs seem to indicate that I may have a mild case of Graves, so now I may have something else to deal with. Graves is also an autoimmune disease, so I'm thinking I just have a confused immune system attacking almost everything. On the plus side my asthma did not flare up this winter and I even made it through the winter without catching a cold! Anyone else have MS and Graves?