NeuroTalk Support Groups - Hi Newbys....Please Introduce Yourselves

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- - Hi Newbys....Please Introduce Yourselves (https://www.neurotalk.org/multiple-sclerosis/4543-hi-newbys-please-introduce-yourselves.html)

Hi,

I was diagnosed in October after four weeks of diplopia. I have several lesions in the brain and one in the cord. My EDSS is 1.5. My symptoms include poor balance, weak left leg / arm, and memory.

I was on IV steriods last week and oral for one more week. After discussing the DMD treatments with my MS neuro we decided on Gilenya over Tysabri. I read the Tysabri & Gilenya efficacy / safety Trials and I concluded the benefits of Gilenya outweigh the risks.

Do you use Gilenya? What has your experience been thus far?

Thanks in advance.

Al

Hi Al and welcome to NeuroTalk!

I'm sorry to hear about your diagnosis but glad you found this site. You'll get a bunch of support and understanding here.

When you get tired of MS come on over to The Stumble Inn. That's where the MSer's go to have fun and get silly. Here's the link: http://neurotalk.psychcentral.com./forum102.html

Welcome to NeuroTalk, Al. Nice to meet you. Come on in and join us.:)

I was on Avonex then Copaxone and now on LDN. I wish you luck on your choice of MS meds..:hug:

Hello! nice to meet you. Pull up a chair, and join us. :hug:

Hello Chilax and welcome to NeuroTalk :)

hi al and welcome,

i don't know anything about your med but just wanted to say welcome.
come on in and stay awhile. this is a great site with great people.

ok well here it is i dont know if i have m.s yet have an appt the 23 of dec i do have neuropathy in both legs walk like i m drunk i have the clenching at night when i try to sleep and like i need to streach my legs my feet feel like balloons and the cold they are so cold then burn so what do i need to do to fix this please help i m 52

Hello Karen and a big welcome to NeuroTalk. Im sorry for the reason that brought you to us, but glad you found us.:hug:

I hope you will come on in and join us anywhere and ask anything. A bunch of people here have gone thru or are going thru what you are experiencing right now.

Let us support you.:)

Hi Karen and welcome to NeuroTalk. You'll find lots of support here.

Good luck with your appointment on the 23rd. Please write down any questions you might want to ask the doctor and take the list with you. I still have to do that and I've been seeing the Neuro now for close to five years. If I don't write it down it doesn't get asked! :o

I also found it helpful to keep a symptom log so that when I'm asked what symptoms I'm experiencing I don't get the dreaded "brain freeze". :rolleyes: I write the date and the symptom......that way the doctor can get a general idea of how long something has been going on. Just a few suggestions.

Please come and join us here and let us know how your doctor's appointment went.

Hi All......especially Sheila!

Quote:

Originally Posted by ArmyMahmaa (Post 58051)

Hello.
I am an MS'r of 5 years. And what a 5 years it's been!
The first year was the worst. The second year I did the Novantrone. Great stuff, but hard on the heart.
I advanced real quick into SPMS. My doctor said to me, boy oh boy, you don't waste time, you just jump right in, huh? No tow-dipping first?
I have a pretty good attitude about it all. It is what it is. God has the plan. And besides, what or whom would I fight? God, I think not. It's all about acceptance I believe.
My trip with MS has not been an easy one. I had vertigo for 5 months along with quad-vision. My left eye crossed in. Man what a sight that was. No pun intended. I have wet myself.....in the mall.....with my girlfriend.....we laugh and I wet more. Note to self--always have a sweater to tie around your waist. I have had the numbing everywhere. The trouble walking. Holding my coffee in the morning. What a site that is. Double fisted to sip my java. One of my friends thought it appropriate to give me a bib. How thoughful she was.
I make fun of myself and this disease all the time.
Never mind the checkbook. Can't do it. Yet another job I get out of. hehe No, really, my husband got tired of fixing all the overdrafts. Did you know you need to subtract the withdrawls and add the deposits. whoops No harm no foul, right?
I haven't always been this way. Only since I was picked to have MS.
I used to think I had it all. That I could do anything. That I was smart, and pretty and well liked. I worked hard at my job as a mom, wife and an employee. I had money, savings, retirement, new car, home, furniture. I was on top of the world, so I thought.
Then one day it all changed. And I changed with it. You know. I like where I am today and who I am.
Odd, no more new car, house needs some fixing, no more retirement or savings. Used it all up waiting on the social security. But you know. I have more now than I ever did.
I have trouble remembering things, and tend to make them up as I go. Just kidding (for the most part). Who ever said ad-libing was bad. It adds more spice and depth to the story. And we all like a good story. Right?
When plans are to be made, everyone seems to do it through my husband. I think it's funny. Yet another thing for me not to have to worry about.
I would love to talk with someone to share the trials and tribulations of this here MS thing that they keep telling me I have.
Talk to you soon,
Sheila

The reason I say especially Sheila is not to play favorites, but my name is Sheila too! (Not too many of us around, so we have to stick together.)
Well, we may have something else in common too. I say may, because Docs are not sure about my dx. I have a lot of sensory symptoms with no dx. Spinal tap was neg and only 2 lesions on brain. I insisted on a VEP responce test, I hope that tells us something. I have abnormal sensations all over body, controlled symptomatically by Gabapentin. I also have a slight tremor in calf and a slight internal tremor in trunk. No motor symptoms to speak of (yet). I am 53 years old, if dx'd, I guess it is called the late onset variety.

Nice to share, have lots of anxiety right now over all this uncertainty. Been going on for a year and a half. But, as someone else said.......if I have it, I have it......no giving it back! Trying to accept is the best thing to do.