Newbies Lounge Check-in, May Days 2014

[gomer]

Welcome to your Newbies Lounge
for MS newbies, newbies at heart, or ole time MSers just want to help.

Being a newbie can be just as scary and lonely as being in Limbo Land. When I first got my formal MS dx, I felt lost, alone and tossed into a sea of hungry sharks. For some, the MS Dx is a shock, for others its the end of a long, sometimes very long drawn out road just to get a Dx, any Dx.

As a newbie there will options to consider, do I take a DMD or if I do, which one. What next, what can I expect is another common question.

Come on in, relax, unwind, decompress and stay a spell. Share your ups and downs, even vent away on our super virtual soap-box if you wish. 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.

We also have fresh cookies, (big Chocoholic here) and red velvet brownies, just follow the fresh aroma of fresh coffee or just hang around visit and enjoy our company.

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.

Any Dr. apts tests etc coming up?


Doc Gomer Sir Falls-a-lot also rolls -a-lot
........(just slightly imperfect).....

Mod-Note: this replaces previous newbies sticky

[tennismom]

Well, I'm a newbie as of May 1st. I think your intro describes how I'm feeling pretty well, overwhelmed. I have an appointment this Thursday to discuss the diagnosis and medication options. I'm trying to be super positive but it's hard not to be scared about the future. The one person I know personally who has MS is 40, has had MS for ten years and is using a walker now. I know everyone is different but suddenly today, it hit me that that could be me. I'm a 41-year-old mom and wife with twin girls that are 15, a 14 year old boy, a 13 year old girl and an 8 year old girl…lots to distract me

[gomer]

Welcome Tmom.........

One early Sx for me was diplopia at 19, almost 20. A doc suggested I use a cane by age 40. I got by w/o using a cane etc till I got near 60. Just remember DMDs, to slow progression have not been around all that long. I feared they would never figure out what was wrong till I landed stuck in a wheel chair. That was almost the case. I did start using a chairs soon after my MS Dx. A P/T told me I was over suing my legs and making them worse. Using a chair part-time helped a lot. It allows me to do more, not less and best of all not TRAPPED.

I chose Copaxone and its been a good choice for me. Everyone and their MS varies, you have to make a choice that fits YOU! If your first choice does not work well or you want to try another DMD, usually that is easy to do.

For me, just knowing WHAT it (MS) was and connecting decades of dots really helped me.

HeadLine NEWS!

Taylor Leigh, 8lb 5oz, arrived at 8:13am this morning. My daughter is tired but resting. My poor son-in-law is out numbered and surrounded by women folk now, 3 to 1

Gomer .

[hawkvtx]

to treat or not to treat

Well just my formal dx yesterday and I suppose limbo is a good way to describe my current status.

Other than the weird feeling in my fingers I feel fine. No other symptoms for a couple of years and those weren't all that bad. Not like some of the awful symptoms that I've been reading about here. My heart goes out to all of the others here that are experiencing more severe and life changing symptoms. I hope the path you've chosen is the right one for you.

Just trying to read and learn as much as I can before I proceed with any diets , meds or any other treatments.

And then there's the just live day to day and enjoy it as much as I can while I can part of me. They say at the end you always regret the stuff you didn't do more than the stuff you did.

So, do I go on some kind of really strick diet that may or may not have any effect,in the hopes that it will prevent symptoms that I may or may not ever have. Or do I go ahead and get that double bacon cheeseburger and enjoy it today because I may not be able to swallow tomorrow?



That's the dilemma , which I'm sure everyone else is going through as well. From what I've read so far most of the med's that are available have some pretty severe side effects. But is worth suffering through those?


My doc tells me that he would support me 100% with either decision. He wants me to come back in 6 months either way for another MRI. I'm cool with that.

But I guess for the moment I'm just confused and a little pissed off.

[Kaitar]

Still Here and Trying to Cope

Well, it's nearly a month on the copaxone. Neuro just added LDN and upped the cyclobenziprine. I am having a couple of good days here and there, but still tire easily.

The fatigue gets me down. I keep thinking of all the fun summer activities I will be missing out on this year.

The few hot/humid days we have had are kicking my butt!

So, I'm feeling pretty low most days. I hold onto the idea that it'll improve, but as days go by, I doubt it.

Sorry to be a downer.

[gomer]

Make mine a TRIPPLE bacon cheese burger!

That comes from a Gomer going to the hospital for a CCTA next week. I went to ER just over a month ago with chest pains. Failed a stress test so this is the next step. On top of that my kidney function is down again, so if I am going to go soon might as well go enjoying the tripple ...

I can handle the diabetes, MS, kidney disease and heart issues Ok, but with so much more than just health issues going on its get hard even for me...

oh got a minor adjustment yesterday on my new wheelchair. So far at least that is working.

BTW It took me 5 or 6 times of logging out and back in just to get on MSworld tonight... sure would be nice if someone would FIX the login here... never happen??

Gomer Sir falls-a-lot

[alishape]

Checking in

Hello all. I haven't been here in a while, but I always loved the newbies lounge. Maybe because this thing seems new to me everyday? How have you been Gomer. I would go for the double cheeseburger Hawk, but maybe not to many...you can still eat your way into a triple bypass! The heat is killing me too kaitar. I am really learning to appreciate fall. I live in Baltimore and apparently there is no spring here any more. The worst part for me is I was a summer warrior before my dx in 2011/2012. I mean I had a thing against my utility company, so I rarely turned my AC on before July 1st. It was a point of pride, beating those jerks!

Well tennismom, you might not know what is going to happen tomorrow, but if you don't have a walker now, then at least you know can't be 40 with a walker.

[gomer]

alishape...nice to see you around again.
I am surviving barely...... I have a full plate with MS, diabetes, heart and kidney issues, then top that off with VA and other issues..well U no what I mean.

On the + side, new grand daughter I hope to get up and meet soon. She was born full of energy, get up and go ready to take on the world.

I spent the whole day in the hospital yesterday and I am wore out! Started with a painful IV start, then a little TV and a good nap before my heart CT . Then back to the short-stay ward for more IV treatment and another nap. Normally the whole thing could be done In under an hour but my kidneys are not good enough for the heart CT test w/o hours of IVs before and after.

Gomer Sir Falls-a-lot

[bb.smith45]

newbie to ms at age 48

Hi im newbie to ms , doctor told me a week to decide the medication I want to be on, all of them look like they have horrible side effects , scares me to read it I put the books and brochures down. any good news on the medicines I would surely appreciate it . he said I would probably have to have the injections first .

[gomer]

Hi BB and WELCOME !

I think most if not all the injectable DMDs are interferons of some flavor. I chose Copaxone for it lesser side effects. In face I have NO side effects. The daily shots are just one more, 6 instead of 5, everyday. My reasoning was quality of life, and my neuro respects my choice and reasoning.

I can not take the pills due to kidney disease issues anyway.

Back to Copaxone, at first it stung (so did my Lantus insulin when I switched) but it quickly became milder and milder and went away completely.

Gomer ... Sir Falls-a-lot

[Diamond57]

Fot my official diagnosis Thursday. I am a bit scared being divorced without children. Sometimes I'm not sure how I feel yet. My head is like mush tonight. I've been holding off telling friends and don't know if that's a good thing. I've always been a caretaker for so many. I know this is a good place for me now to air. I've always been more on the private side. I don't want people to feel bad or on the other hand to just brush me off either. My friends know I haven't been myself on account I just keep making up excuses not attending activities, parties etc. I just don't know yet.

Feeling a little alone and sad tonight.
Susie

[gomer]

WELCOME diamond......

Where is Gladstone? Is it near Nashville, St Louis, Paris, Moscow or maybe closer to Hell?

May I suggest you try and pick some activity that is not too demanding. To tell or not to tell? Well you have to do what YOU are comfortable with. I think its better to NOT hide your MS. (they KNOW something is wrong, and imaginations usually run wild with things far worse than reality) Maybe you could pick one friend and break it gently. Make sure you let them know you still want to be as much a part of things as practical for you.

Good luck

Gomer Sir Falls-a-lot

[Diamond57]

Gomer!

Thanks for the WELCOME!!! Nice to meet you from a far. Gladstone, MI is in the Upper Peninsula of Mich. I want to thank you for your encouragement and advice. I'm slowly telling a few of my besties and my family. I'm doing it in an upbeat manner because that's the type of gal I've always been. I don't want people to feel sorry for me. But they all have seen the change even before I told them. It's the fatigue that just slays. And I was only diagnosed on the 28th of May so my head is still swimming. I love to walk and that helps my mental stability as I have suffered with severe dpression since I was 13. All in all doing ok. Hope to hear from you again new friend. Wishing you a pleasant day...
Susie Q

[gomer]

I was just up there Memorial day weekend visiting my new yooper grand daughter. I have been through many tiny UP bergs, might have flashed thru Gladstone at some time or another. Head swimming is not unusual, at least for a while. (gotta be warmer than Lake Superior...ha ha.) Not as much SUN as downstate but yoopers tend to get out doors more so that may partly make up for less sun.

Gomer Sir Falls-a-lot

[gunther428]

newbee to this

Hi all. Im new to this and still trying to figure it out. I was finally diagnosed in February after a frustrating a 3 year journey.

I got optic neutitis first and was pretty much blown off with the neuro I had been seeing for over 10 years because I was too old, 44 years at the time. A year later a new nero diagnosed me with clinically insulated MS. My prior neuro retired and my husband didn't like the new one i found so we didnt go back.

Last February I had a major attack that left me unable to stand without falling over, couldn't complete a sentance and studdered to complete a word for three weeks. I found a new neuro again when was still disgnosed wth clinically isolated after more tests with no changes in my MRI and then infustion treatment. I couldnt believe my ears.

At that point I was fed up and went to a Nero that specialized in MS, I didnt know there was a difference. When we got there he questioned why we were there because the prior Neuro only put in his report I was tested for a UTI because my blatter was out of control. My husband was a little upset. We explained what happened to me and how long it lasted. He spent 2 hours and 45 minutes with us going though all my MRI scans, medical records and the nuero tests they do. He was still sceptical to diagnose me, not sure why.

I took charge of this situation and started pointing out the facts, all other possible medical issue have been ruled out and the McDonald criteria, once I did that he diagnosed me. I was fed up with getting the you have to wait for another attack attitude. It made me feel like some doctors are afrad to diagnose because it steps out of the government issued flow chart.

Thanks for the site because only people with MS can understand.