Hi Holly. I've got MS too. I had a "demyelinating incident" in 1978 and was in hospital for about three weeks. I was tired (fatigued) a lot for about two years after that but eventually got over it. I know how awful it can feel with that MS tiredness.

Back in 1998 I had disk surgery and had a flare up of MS. Been taking copaxone injections every day since then. Not tired, but my left hand is wonky so I can't play guitar any more. Have to play the bass instead. The tool of ignorance! My sister Holly lives in Virgina too.

Hi Cinnapatch, Nice to meet you. Well, it sounds like you are doing pretty good with your ms which is a comfort to me. I think that's quite a coincidence that you happen to have a sister named Holly who lives in Va too. I'm looking forward to getting to know all of you here. I've never played the guitar, so I haven't noticed any problems with my hands in that way. They don't work quite as well as they used too, but they work at least.

Hi Holly,

I have a sister with MS and Parkinson's.She was in remission for awhile,but now her health is bad.The brain lesion that is at the base of her skull is the one that's really doing the job on her.

She was a nurse,she went to school for years,not sure what kind of degrees,I know she made good money..her last job was as director of a local hospice.She became ill right after our mom died and she lost her job.

She's gone from a person that could speak in front of a couple of hundred people,to at times,not being able to find her words.Some of that is the parkinson's.Our grandmother had parkinson's.

She has many friends and I'm glad because even though I only live about 45min away,I'm basically homebound due to chroinic/transformed migraine.

I had a horrible night last night.Migraine level thru the roof.I was so bad with the pain,I asked God if it was my time,to make it quick.

My sister takes a "snoozy" every day at 2pm.She has coffee with God every morning from 10am to 11.

I feel awful that I can't do more for her.But,I hardly get out.I haven't driven in over a yr.I get aura's alot,which usually is a sign my pain level is going to go up.

Most of the time,nothing helps.I'm in constant pain.Migraine is a trivialized disease.

Sorry to go on..Welcome to the group.

As far as what you can get done every day,don't carry guilt,ok?Alot of people don't understand,you miss who you were,you mourn for that person.Be easy on yourself.

Hey Marg, My Aunt has Parkinson's and has had her share of struggles. It is a terrible disease. Of course, what disease isn't. I'm doing relatively well with my ms. I'm sorry that both the Parkinson's and the ms have taken a toll on your sister. It sounds like migraines are taking a toll on you as well. I have been fortunate, only to have what I think was one migraine headache and that was right before my first ms attack. I was sensitive to both light and sound. I couldn't imagine dealing with that all the time. I hope they come up with something that really helps that or cures it. I know that they are doing a lot of research on ms right now. So I am hoping for a cure or better medications in the not to distant future. At least, that is my hope. Thanks for the welcome.

I think they are making strides in MS.It upsets me that with my sister,that one lesion is the thing that's doing so much to her.

I try to picture it disolving.We have each other,at least by phone.You can hear it in our voices,what kind of day we're having.

I miss being able to just look out the window at the blue sky.I wear sunglasses at the kitchen sink because we have a large window above it.

I keep the house dark.I just miss what I used to take for granted.But most of all,I just miss not being in pain all the time.

Many times I won't go to the er,because the attitude you get.."Oh honey,you have a headache" You are triaged the bottom,I mean bottom.

You can't win,if you go too often,they start thinking you're a drug seeker.Yet sometimes when I've gone,I tell them I'm a chronic migraineur,it's been said to me "You don't look familiar."

I know what you mean about migraines and going to the ER. That whole attitude about..oh you have a headache is a real problem. And yes, they tend to deal with others first instead of understanding the very real pain you are feeling. I hope that there will be a major breakthru in research to help all of us migraine sufferers....I pray it's soon. I don;t have them as severly as you do..I get them occ. but mostly with hormone shifts. My main problem is my Adiposis Delarosa which means I have painful lumps growing in my muscles, by nerves and well frnakly, they are everywhere now. But the chronic pain is a constant battle so I can relate. But when you mentioned about the ER and the whole attitude...I had to make a comment...boy, do I understand!

I'm really sorry for what you're going thru.And as far as chronic pain,it is usually that chronic pain sufferers are triaged last.The er feels that chronic pain patients can wait until office hours and see their doctor.

I've never heard of what you have,I'll have to look it up.Is there anything they can do for you?Any research going on?

Feel free to message me anytime.I am a good listener.Take care