I have Multiple Sclerosis

Lefty · Post by **Lefty** » Fri Apr 10, 2009 2:08 pm

Oh **** Tobey. That sucks. I sorry to hear about your condition.

Rivas · Post by **Rivas** » Fri Apr 10, 2009 4:29 pm

Sorry to hear that, stay strong RE

David · Post by **David** » Fri Apr 10, 2009 10:37 pm

JawZ wrote:
I would ask TonyT via PM if he has any info on the drugs used to treat MS.

Like marijuana?

Tobey,

Any chance of visiting LSU?

RoundEye · Post by **RoundEye** » Fri Apr 10, 2009 10:53 pm

David wrote:Tobey,

Any chance of visiting LSU?

That is where I'm going now.

Link

OSULLY · Post by **OSULLY** » Fri Apr 10, 2009 11:19 pm

Don't know what to say, one of my brothers has been told he has MS but in his case there are other complications leading to his MS. You have my prayers.

Chris O'Sullivan

WhoNut · Post by **WhoNut** » Sat Apr 11, 2009 1:01 am

Ahh man. No words, except to say I'm very sorry.

Keep fighting it friend - I know you will.

David · Post by **David** » Sat Apr 11, 2009 1:41 am

RoundEye wrote:That is where I'm going now.

Link

In Shreveport, perchance?

Russell · Post by **Russell** » Sat Apr 11, 2009 1:54 am

My wife was diagnosed with MS in her late twenties, she's 41 now. It is a devastating disease. She did quite well for a long time but within the last year and a half has begun to get worse. I hate to see how it tears at her emotions. Depression is very common with this disease. She gets so frustrated when she can't do the little things, and I know it kills her that she can't keep up with our boys.
Fortunately, she is still able to work and has pretty decent insurance, because I doubt she could get disability at this point. She is in charge of pricing in our local Kroger and stays on her feet quite a bit. Like Tobey said by the end of the day she looks like she is staggering drunk. She so hates to have people stare at her and feel sorry for her.
Her diagnosis came as a complete shock. She woke up one day and realized she was having trouble seeing out of one of her eyes. We went to the ophthalmologist who diagnosed her with optic neuritis. He recommended that she immediately make an appointment with a neurologist. She had a CT scan and was officially diagnosed with relapsing/remitting multiple sclerosis. She was treated with steroids at first, to help clear up the optical problem, then we were introduced to the very expensive world of interferon based medications. She was on BETASERON for several years, but then her new doctor switched her to AVONEX. Both are very costly even with two insurance plans. Thankfully we finally looked into cost assistance and found out she qualified for free medication. She will get her meds free for two years and then they will look at our situation again. I don't see our income increasing greatly in the next two years, so hopefully she will continue to qualify. The cost of AVONEX, which is administered weekly in shot form, is about $1900 for a months supply.
We certainly empathize with what you and your family are going through and we will be praying for you.

Humboldt · Post by **Humboldt** » Sat Apr 11, 2009 2:13 am

Russell wrote: The cost of AVONEX, which is administered weekly in shot form, is about $1900 for a months supply.

Even appreciating the need for drug development I'm appalled at the cost of a series of shots like this.

My parents just shelled out $13,000 for 2 sets of rabies shots after seeing a bat flying around their living room and bedroom:

RoundEye · Post by **RoundEye** » Sat Apr 11, 2009 5:25 pm

David wrote:In Shreveport, perchance?

No, I’m going to the New Orleans location. Shreveport is quite a ways from me. The NO hospital isn’t too far from me except I’m on the Westbank of the Mississippi river and it’s on the Eastbank. Not too bad other then rush hour and other high traffic times at those times it’s a real bitch to get to.

I’m trying my best not to become more of a burden on my family then what I already am. I’ll tell you this though, this explains A LOT of my problems. I’ve read quite a bit on it and it explains why I’m having trouble seeing out of one eye (like Russell mentioned), the extreme fatigue, I’m a complete loser at owning my own business (I’ll admit to that) but hurricane Katina helped push me over the edge, crawling through hot attics of a new house in the south ain’t fun. Getting fired from Harley because I was too slow. I dropped a cop’s bike and they were not too happy about that at all, even though no damage was done. My foray into prescription pain pills. I was misdiagnosed partly because of past traumas but in the back of my head I knew something was wrong. That’s been a big challenge of mine, people I know thought I was on drugs or drinking because of the way I walk and talk. I thought I would have to live the rest of my life in pain because of my past incidents but walking around like a drunk monkey changed all that. 1000’s of lesions that showed up on my brain during a MRI made it almost undeniable. The freaking list could go on and on. I don’t want to talk myself into having this but I better learn to accept it because it’s almost certain I have MS. The doc said 90% chance, that pretty good odds that I have it.

It explains why my balance is shot, gone completely. I can’t even walk across the room with a cup of coffee now without trying to throw it against the ceiling.

RoundEye · Post by **RoundEye** » Sat Apr 11, 2009 5:33 pm

Humboldt wrote:Even appreciating the need for drug development I'm appalled at the cost of a series of shots like this.

My parents just shelled out $13,000 for 2 sets of rabies shots after seeing a bat flying around their living room and bedroom:

The cost is insane, I’d let myself turn into a vampire before I paid that.

RoundEye · Post by **RoundEye** » Sat Apr 11, 2009 5:49 pm

Russell wrote:My wife was diagnosed with MS in her late twenties, she's 41 now. It is a devastating disease. She did quite well for a long time but within the last year and a half has begun to get worse. I hate to see how it tears at her emotions. Depression is very common with this disease. She gets so frustrated when she can't do the little things, and I know it kills her that she can't keep up with our boys.
Fortunately, she is still able to work and has pretty decent insurance, because I doubt she could get disability at this point. She is in charge of pricing in our local Kroger and stays on her feet quite a bit. Like Tobey said by the end of the day she looks like she is staggering drunk. She so hates to have people stare at her and feel sorry for her.
Her diagnosis came as a complete shock. She woke up one day and realized she was having trouble seeing out of one of her eyes. We went to the ophthalmologist who diagnosed her with optic neuritis. He recommended that she immediately make an appointment with a neurologist. She had a CT scan and was officially diagnosed with relapsing/remitting multiple sclerosis. She was treated with steroids at first, to help clear up the optical problem, then we were introduced to the very expensive world of interferon based medications. She was on BETASERON for several years, but then her new doctor switched her to AVONEX. Both are very costly even with two insurance plans. Thankfully we finally looked into cost assistance and found out she qualified for free medication. She will get her meds free for two years and then they will look at our situation again. I don't see our income increasing greatly in the next two years, so hopefully she will continue to qualify. The cost of AVONEX, which is administered weekly in shot form, is about $1900 for a months supply.
We certainly empathize with what you and your family are going through and we will be praying for you.

It does tear at your emotions quite a bit. Especially when you want to work and it’s hard to find a job when you walk like this. I’ve been fighting depression for quite a while and what really sucks is the suicide rate is high for people with MS. I’m wondering if I should get the guns out of my house to be honest. I don’t wanna live like this or be such a financial burden on my family, and this don’t look like its going to be a cheap disease. (like fighting any disease is cheap)

mountainman · Post by **mountainman** » Sat Apr 11, 2009 6:28 pm

Sorry to hear that, RE. I wish there was something I could do.

Gixxer · Post by **Gixxer** » Sat Apr 11, 2009 6:36 pm

humboldt wrote:even appreciating the need for drug development i'm appalled at the cost of a series of shots like this.

My parents just shelled out $13,000 for 2 sets of rabies shots after seeing a bat flying around their living room and bedroom:

13,000?????

RoundEye · Post by **RoundEye** » Sat Apr 11, 2009 10:36 pm

David wrote:...Like marijuana?...

I was reading throughthis thread and it made me think about this comment..

I don’t smoke pot, I haven’t in years. But with the mounting evidence for medicinal use, I can’t believe they just don’t legalize it, or decriminalize it. There are some f****d up things happening in this o so wonderful government of ours.

I classified under the same class as meth and heroin, come on man give me a break.

David · Post by **David** » Sat Apr 11, 2009 10:46 pm

Tobey,

I had a friend whose mother was on a "program" and found quite a bit of relief.

I am presently in contact with a couple of pediatric neurologists concern my friends baby. Be assured, I will chat with them regarding near future modalities.

Curious, have you been treated with Depakote recently?

Mad_Haggis · Post by **Mad_Haggis** » Sun Apr 12, 2009 2:02 am

Vulans have outstanding stamina.

Sorry, just working the legal torrents.

Came across a Gem.

LAN game.

can I move this thread to the gaming forum?, no

I'm not hidding the fact

I'm a big tekkie, the problem is I have no tangeable proof. I drink more than most trekkies.

Star Trek [ Starfleet Academy] no updates. It's a 7 cdrom box set.
Back in the day of LAN games.

Someone took the time actually, too rip the pre-mov file.
12 years ago, game on with 15 PC's with 2 copies of the game.

Arctitecture was the same as NFS2, "Hot Pusuit 2"

2 times 7 is 14

"Hot Pursuit"(c) was 6 by 2 PC's

Lord's of the realme was 3/4 pc's on the LAN.

All I'm sayin, is this is a game that I bought twice.

I have 8 copies of BF1942, bought and payed for.

Someone actually ripped this game movie all together without any reduction in the AVI format. I'm Impressed

SeedOfChaos · Post by **SeedOfChaos** » Sun Apr 12, 2009 5:55 am

Wow Tobey, not exactly what I wanted to read coming here. My thoughts are with you, as others said, keep fighting! It's the best thing you can do right now.

nightowl · Post by **nightowl** » Sun Apr 12, 2009 11:52 am

hey tobey,

Try to keep positive and keep on fighting!

hanketron · Post by **hanketron** » Mon Apr 13, 2009 7:37 am

I was humbling reading along, new to forums and was thrown into reality with your post.

I'm so sorry for your diagnosis.
I hope this can help and not offend.
We've lost 3 family members in the last 6 years. About 5 years ago, I had an epiphany while my Dad was dying . My house burned down with all I own in it and no insurance. When the firefighters arrived, I really didn't care about my house. My father was dying and I understood, for the first time, how insignificant those "things" were. I knew from that moment on, how lucky I was that I still had my father, even if it was only in ICU. After he died, I knew how lucky I was for the relationship he and I had (strange for a man but he was my best friend). My life changed forever; I don't get depressed or down anymore. Whatever happens, I see how it could be worse and how lucky I am. Since that time, much has tested me and it is always the same, I know how lucky I am. I hope I haven't offended, I just wanted to share how I was helped, hoping you might find something useful.
If you need a bright side, look at all the love and sympathy displayed for you in this post.
If Gods up there listening, He'll hear a pray from me for you.
Hang in there brother

RoundEye · Post by **RoundEye** » Thu Apr 16, 2009 11:31 pm

UPDATE:

For those of you who are concerned and keeping track. I just got back from the neurologist. More then likely I have a case of MS, the odds of it being something else are very slim, and the alternatives aren’t all that bright and cheery either. Tomorrow I have to check in to the hospital through the emergency room to have some more tests run. Also with tomorrow being Friday I’m probably looking at staying for a few days since they don’t run the test on weekends. I’m not looking forward to staying in the hospital for any length of time or a spinal tap which is one of the test that has to done.

I asked the doctor how long of a stay it was going to be and he was unable to determine how long at this point. I would have to admit I’m not a happy camper at this point. I guess I should be happy about the fact that some diagnosis progress is being made.

hanketron · Post by **hanketron** » Fri Apr 17, 2009 6:35 am

Hang in the man, it's amazing what they can do in medicine today. Good Luck and let us know how it goes.

RoundEye · Post by **RoundEye** » Fri Apr 17, 2009 7:48 am

hanketron wrote:Hang in the man, it's amazing what they can do in medicine today. Good Luck and let us know how it goes.

Thanks, it's nice to see new "faces" around here too. After my morning cup of coffee I’m off to see the wizard.

…….. now where did I put that dog?

Debbie · Post by **Debbie** » Fri Apr 17, 2009 7:57 am

Chin up RE, we are routing and praying for you!!!

ssjDoh · Post by **ssjDoh** » Fri Apr 17, 2009 8:27 pm

Hey RE, not the news I wanted to hear from an old friend. You're in my thoughts and good luck.

9mmprincess · Post by **9mmprincess** » Sat Apr 18, 2009 7:04 am

I'm so sorry to hear that Roundeye. I hope you can get on some medications that will do some good...and I hope you go into a long, long remission. My thoughts are with you <3

blebs · Post by **blebs** » Sat Apr 18, 2009 7:48 am

I'm late, as usual. Tobey man, I don't quite know what to say. I could say misery loves company and add my own woes to everything, but what good is that? I can relate real well with being young and screwed. Fight the fights that you need to and let the rest go by. I wish it weren't so, but apparently it is.

MissTynker2 · Post by **MissTynker2** » Fri Apr 24, 2009 11:34 pm

Are you home yet? Update please?

RoundEye · Post by **RoundEye** » Sat Apr 25, 2009 10:06 pm

UPDATE:

For those of you who are curious. I just got out of the hospital earlier today, I have been in there since the 17th getting tested and they ran my ass through the mill. I had six MRI’s, three with and three without contrast. When they do your brain they put on a helmet kind of like a football helmet and then stick you in the tube. Two brain, two neck and two spine, gave them SIXTEEN test tubes of blood for testing (found out I don’t have AIDS), spinal tap, that made me sick and puke for two days, just my luck I had all the bad side affects I could get from that. They connected wires to my arms and head and shocked me through my body to see about nerve damage. That lady was getting a little miffed because I wouldn’t sit still enough. I couldn’t get it through her head that if I wasn’t twitching there was no need for me to be in the hospital, plus they were shocking the hell out of me. I’m still not certain if they were trying to cure me or kill me with that damn test. There were plenty more test that I can’t think of now plus I’m sure y’all get the point.

The diagnosis, I have MS and not only that I have a rare form of it. With me going to a state teaching hospital and having a rare form of MS, I was their test lab rat. I had two teams of doctors, internal medicine and neurology. There was three lead doctors on each team and all their little student doctors following them around like baby ducks all day. Some days I was in the hospital there was standing room only in my room. I should’ve started charging their asses admission to my room. For the most part everything went OK except for the electro-shock lady and starting about six in the morning they would come into the room and wake me up. They woke me up a lot, to take my temperature and blood pressure. Yesterday I had enough of being waken up over and over, the main doctor had come into the room and woke me up for about the fifth time. Sorry but that is my biggest problems in life, getting back to sleep after I wake up, and I’m kind of nocturnal and just went to sleep about five in the morning. I went off on that poor bastard, I’m really glad he took it with a sense of humor and left me alone. I opened my eyes a little bit and told him “man you poking an angry f***ing bear with a big f***ing stick right now, it’s best for all of us if you just go away”. He left with all his baby duck students in tow. I apologized when he came back later, he understood that I had been through a lot, going though a lot of life changes and was cool about it all. I was trying my best to be cool with everyone but I had just had it at that point. After all you really don’t want to piss off the people that have to stick needles in you every day.

Speaking of needles, I have to give myself a shot everyday for the rest of my life. That’s not a major deal, the needle is small, not like the whale harpoons they were drawing blood with. Here’s another thing that might make you consider health care a bit more. That one prescription is 3700.00 dollars a month. Yes, you read that right. A medicine I need to lead a somewhat normal life (like I’ve ever been normal anyway). Michelle was in tears when we left the pharmacy. We also went to two other places and the price didn’t vary much all things considered. I don’t know about the rest of the world but I can’t afford over 44,000 dollars of meds a year and that’s only one of four prescriptions that I have to take.

My manual dexterity is gone, my right eye is blurry, I walk like a drunken monkey and my cognitive thought process is FUBAR now. I wonder if my head has been tweaked for a while now anyway. My friends and family have always ragged on me about not being right in the head anyways. Try tying your shoes or opening a door without using your thumbs and you get some of a clue of I feel when I get really bad off.

Well that’s enough for now, it’s a lot to take in ….. trust me on that. Also those of you who know me, know I’ll be writing and whining about this more.

I sure hope your week went better.

RoundEye · Post by **RoundEye** » Sat Apr 25, 2009 10:15 pm

ssjDoh wrote:Hey RE, not the news I wanted to hear from an old friend. You're in my thoughts and good luck.

Wow it’s jDoh !!!

Where in the hell have you been, what’s the matter someone flip your rock over?

Roody · Post by **Roody** » Sat Apr 25, 2009 10:20 pm

Sorry if I missed this somewhere in the thread, but you don't have insurance to pick up some of that $3,700?

I am really sorry about all of this man. Seems you have experienced more heartache then most people ever should.

RoundEye · Post by **RoundEye** » Sat Apr 25, 2009 10:28 pm

princess, blebs, MissTynker

Thanks for your support.

I’m really trying my best to keep a brave face shining outwardly for my friends and family. Truth be told, I’m going through emotions like its nobody business, depression, anger and some happiness. I’m glad that I’m finally diagnosed now so I can move on, granted its far from the diagnosis I wanted but I got it anyways. The doctors said that more then likely I have unknowing been fighting this now for five to ten years. I have been putting up a great fight. Physically I’m weak but mentally I’m still one strong ass mofo. I refuse to let myself go down without one hell of a strong ass fight.

God dealt me a suck ass hand but I’m not out of the game yet.

RoundEye · Post by **RoundEye** » Sat Apr 25, 2009 10:35 pm

Roody wrote:Sorry if I missed this somewhere in the thread, but you don't have insurance to pick up some of that $3,700?

No, unfortunately. I had insurance when I was working at Harley, but now that I have been diagnosed with this probably no insurance company will touch me with a ten foot pole.

I am really sorry about all of this man. Seems you have experienced more heartache then most people ever should.

We all have our stories of sorrow and miseries in life, mine just happens to be one long ass book.

Roody · Post by **Roody** » Sun Apr 26, 2009 8:05 am

That is completely mindblowing. What the heck do pharmacies/insurance companies possibly think can be done in those situations. That's not even a realistic price for anyone not a millionaire.

hanketron · Post by **hanketron** » Sun Apr 26, 2009 9:01 am

Thanks for the update. At least you know exactly whats wrong and there exist a medicine for you to take. Just sucks the med. is so expensive (must be cutting edge or hard to come by or something). Have you tried Googleing "prescription drug assistance"? Is the medicine going to reverse any damage or stop any further damage from happening? Sorry for all the questions, I'm just curious and concerned.

If there's a supreme being up there, then it's hearing my payer for you and yours

Post by **YeOldeStonecat** » Sun Apr 26, 2009 9:25 am

Words cannot describe reading the trials that a fellow longtime SG member is going through. So many thoughts and prayers going your way RE.

At least you're still writing with a sense of humor...as difficult as this post is to read....I did chuckle at "not like the whale harpoons they were drawing blood with."

MissTynker2 · Post by **MissTynker2** » Sun Apr 26, 2009 3:08 pm

Thanks for the update RE. Now you can get some rest!! It sure ain't gonna happen in any hospital. My favorite is when they awaken you to see if you need a sleeping pill!! Arghhh!!

I would think you would be classed as totally disabled? Would not Social Security , Medicare Part D, come into play to help with those horrendous medicines cost? Hopefully, your Dr.s office, and or hospital, will have info on any other programs that might assist you as well.

Nice to see you concentrating on what you CAN do...and not what you cannot at this time. That's working with the solution..and not staying stuck in the problem! Good for you!

Keep writing!

mountainman · Post by **mountainman** » Sun Apr 26, 2009 4:15 pm

Thanks for the update, RE. Not sure what else can be said, but damn. If anyone can make it through mentally, you seem like a strong willed dude.

I'd be very surprised if Medicare can't/won't help you out. Perhaps talking with some folks at the hospital who are very familiar with the process can help you find the assistance with the RX that you need.

More info... http://www.ssa.gov/prescriptionhelp/

(LIke you haven't looked at it already, right?)

Good luck, dude.

Russell · Post by **Russell** » Mon Apr 27, 2009 12:47 am

RoundEye wrote:No, unfortunately. I had insurance when I was working at Harley, but now that I have been diagnosed with this probably no insurance company will touch me with a ten foot pole.

We all have our stories of sorrow and miseries in life, mine just happens to be one long ass book.

Just food for thought and you may have already checked in to it, but try contacting the company that makes the meds. Some, if not all have programs that provide the medicine for free or may offer some type of financial aid. Combined my wife and I make a little over $70,000 a year and both have insurance. Even with that, she qualified for a program and is getting her Avonex for free.

Mad_Haggis · Post by **Mad_Haggis** » Mon Apr 27, 2009 1:00 am

RoundEye wrote:Add anything you want, doubt I’ll be able to make sense of it anyway.

Finnaluy got around to viewing the"the west wing"