New to Forum and MS
 

Hi my name is Sheila,

I was diagnosed in Oct, 09 but had symptoms since early 08, at least symptoms that sent me to see my Dr. Does the balance and stumbling ever get better? I can't wear heels or run. When I attempt to take my dog for a walk, she actually walks me. I am on rebif even though I hate needles. I tried Nuvigil for fatigue but that didn't work. I can't remember the last time I had a good night's sleep. Does anyone belong to a NMSS support group? I have thought about trying one. :grouphug:

Hi MG. Sorry to hear about your dx. I wish I had positive feedback on your balance and stumbling. There is really no good answer.

as for rebif. I hate needles too. I no longer use a DMD but I had a diabetic friend so I asked her which body part did she use since she had to shoot med many times a day. She told me stomach. It was not easy to try my soft underbelly! But it has the most fat. It really was a good place and plenty of spots too.

I medicate my sleep! I am an old lady and truly, I love my sleep! There are plenty of things to try first before drugs though. Lots of people here to answer your questions.

Hi Aarcyn,

The stomach seems to be the least painful and doesn't leave any noticable marks. I mostly inject in the thighs cause that is where the majority of my body fat is located. Before the nuvigil, I tried Ambien CR but I stopped because I didn't want to have to take a pill to get up and take one to go to sleep. Now I use amantadine once a day to combat the fatigue. It seems to work a little. I was going to physical therapy but I stopped because it wiped me out. Age has nothing to do with sleep, I have loved my sleep since my college days. I would rather sleep than party.:D

MG - you may want to introduce yourself in the newbie section.:)

Welcome to NT...sorry to hear you're dealing with the crummy symptoms...

Fatigue is one of my on again-off again symptoms...I don't take any meds currently for it. My neuro likes to make sure there is nothing exaserbating like a UTI or heat to ramp up the fatigue...so I just drink lots of caffeine and rest when I can't push through it.

I also have sleep issues. I let myself lie awake for an hour, then I get up and read something boring or watch the weather channel...that channel is a guarantee to put me to sleep...

I am loathe to take narcotics, so I never ask for any to help me sleep.

Hope you stick around...lots of info and support around here!!:)

Hello Sheila and welcome to NeuroTalk :)

My answer is based on my own personal experience with my MS.

I have had poor balance and stumbling/tripping since I was a child and no, it has never gotten better. Yes, I have had MS symptoms since I was a child.

I gave up on heels a very long time ago :(

MG,
Welcome.I am PPMS, in a chair, but was dizzy and stuff before I got here after 16 or so years. Everyone is way different from each other, so never judge yourself by other's voyage. I do Amantadine 2x a day - morning and after my nap (don't we have a member by that name? AMN?) but don't have sleep issues (10pm-4,5am) when I have to use bathroom. I take Oxybutin at bedtime to help me not have to. In AM take Vesicare, another help for Urine, having to pee syndrome. I take an Amantdine also. Tried Provigil, did not help at all.

Hello and welcome!

I was never big on high heels so I cant help you there, but as you adjust to this life, you will learn tips and tricks to help.

Welcome Sheila. Use the autoinjector? I used ibuprofen or benadryl to sleep. As of now i'm after script sleep aid due to my current round of steroids.

Hi Sheila,
Welcome to NT. I'm sorry you had to join us and have MS. We never know what life will give us. Everyone gets something sooner or later.

Since you are new to MS we are here to help you and you can help us too. We learn from each other. If you feel you need more support then join a NMSS meeting group. If you don't like it, then don't go back.

Some find it helpful and meet new friends or some just get more confused because like kicker said, we are all different.

On here you can say whatever you want, ask any question and not be embarrassed. We are here to help and listen too. We never judge anyone, even when some have female or male only problems. Even dating and spouse/partner issues are spoken on it.

I think you have come to the right place. About the high heels, I, too, miss them, and oh how I would love to be able to dance again.

I would look drunk and fall over on the dance fall so had to give it up, and that was in flat shoes. I understand. I held onto my high heels for ages. I couldn't bear to toss them. Now I live in sneakers, go figure.

Nice to meet you. :)

Welcome Shelia, so nice to have you join us. :)

Hi Shiela,

"WELCOME" TO NEUROTALK!

That's really all I have to say without being stupidly redundant and repeating what everyone else has already addressed. :deadhorse:

I use the autoinjector. If it wasn't for that, I know I couldn't inject myself. Pushing the button is what my nightmares are made of. I take 2 ibuprofen before the injection and then I lay in bed and pray for sleep.:)

hi sheila and welcome to NT,

i had a presenting gait problem and that's progressed into a balance issue for me. i need to use a cane and find it's my new "3rd" hand. using any aids is really a plus because it gives you more freedom to move safely.

i'm a nurse and a needle weenie too. i'm great at giving, but to stick myself, well, i had to get used to it. it does start to become routine after a while. i'm on copaxone and sometimes use the autoinjector for hard to reach spots.

sleep is a real issue for me too. there are many meds to treat MS sx's (symptoms). sometimes you need to try different meds to see which works best for you. please tell your dr the med you're on doesn't seem to be working and see if he'll change to something else.

glad you found us. hope to hear more of your posts.

Welcome to NT!!!!!! When I was first diagnosed I went to a support meeting. I thought it was the correct thing that to do, the thing that everyone did! I was young, just 47, an RN, busy Mom and I didn't like what life had given me. But I was not ready at all for a support group meeting. I saw people who had all differnt forms and stages of MS. I really remember this very vibrant looking woman who had to be fed by her husband. So many people were either using canes, manual or power chairs. I almost ran out of the room! But like you, I can't run anymore!!!! I just an't ready to see that some people have those problems and that I to might have those problems. I just didn't understand how a person could still be a 'person' and have all that wrong with them.

Then I found Brain talk which eventually many of the ones from brain talk are here at neuro talk. This is my support group. A long time ago we had groups that would form and meet for a weekend. I went to one of these. There were several people that were using manual or power chairs but it was OK. I knew them as people by then. I saw that the unkwon faces I talked to all the time on the internet and had grwon to know and love and see worth in were also in a wheel chair. But it didn't amtter then. I already knew them as some one worth knowing. But it was to much at first for me to see these unknown people who shared my illness in situations I could not handle at the time.

So is a support group right for you? Onlly you can tell that. The organizations are wonderful. I get all sorts of monthly newsletters, we have weekend getaways, educational meetings (drug companies like to spend a lot of money to encourage people to buy their product. They have wonderful meals!)

If you do join a support group don't forget us and stay here with us as well.

Welcome to the group :) I won't repeat what the thers have said. My balance and clumsyness did not ever really get better, I just got a bit better at adapting and expecting it. I also finally accepted that (for me) AFO's and crutches made life better - and I spent considerably les time on my butt creating a scene in WalMart/work/restaurants

I now use a wheelchair for distance as I also cannot go far on my sticks, but again everyone is different. My biggest hurdles at accepting new issues were/are my ego.

For me a support group was too overwhleming, but here I have support from folks who have become friends. I just don't have t go to some location every 3rd Tuesday so I can visit in my pjs (even if it is one of those bad days where I am not dressed at noontime)

Jane

I do miss the good food here at my computer. I'm sitting here eating Milk Duds if any one wants some!

Hi Sheila and welcome to NT!! Yes, gait was a problem for me right from the get-go. My balance center in my brain was damaged early on according to my neuro. I'm now in a powerchair, but have been living with this 'thing' for thirty-four years. Hope to see you around. :)

I'll probably be around for as long as I have my wits. My imbalance is what sent me to the doc. When she saw me walking and hugging the wall she referred me to a neuro. Most people look at me and since I don't have a cane or anything they think nothing is wrong me. You'll see me around the web.:)