I have Multiple Sclerosis

Mad_Haggis · Post by **Mad_Haggis** » Mon Apr 27, 2009 1:01 am

haggis is"Devdas - Maar Daala'"

nightowl · Post by **nightowl** » Mon Apr 27, 2009 5:42 am

hey tobey,

Sorry to hear about your diagnosis. You know what cheers me up when I am down.....

Boobs in the face!

Roody · Post by **Roody** » Mon Apr 27, 2009 8:45 am

nightowl wrote:hey tobey,

Sorry to hear about your diagnosis. You know what cheers me up when I am down.....

Boobs in the face!

As it does us all.

RoundEye · Post by **RoundEye** » Mon Apr 27, 2009 1:02 pm

nightowl wrote:...Boobs in the face!...

That works for a lot of people pretty well.

Roses on a piano works too, but I’ve found that her Tulips on my organ works best.

RoundEye · Post by **RoundEye** » Mon Apr 27, 2009 6:05 pm

Quick update:

There is no way in hell I can afford this medication $6700.00 ???? They must be doing some of their own meds.

LINK

That was just a quick search, I’m in the process now of trying to find some assistance.

Here’s the info on the expensive stuff.

Rebif® (interferon beta-1a) is a purified 166 amino acid glycoprotein with a molecular weight of approximately 22,500 daltons. It is produced by recombinant DNA technology using genetically engineered Chinese Hamster Ovary cells into which the human interferon beta gene has been introduced. The amino acid sequence of Rebif® is identical to that of natural fibroblast derived human interferon beta. Natural interferon beta and interferon beta-1a (Rebif®) are glycosylated with each containing a single N-linked complex carbohydrate moiety.

Just great, now I have Chinese Hamsters involved in my health.

ghost · Post by **ghost** » Wed Apr 29, 2009 4:59 am

I don't even know what to say. Words seem almost meaningless. RoundEye, I'm sorry.

RoundEye · Post by **RoundEye** » Wed Apr 29, 2009 8:57 am

I don’t know what to do at this point either, my compass is still spinning in circles about this. As far as what to say, “dude, you are so f**ked” works.

YARDofSTUF · Post by **YARDofSTUF** » Wed Apr 29, 2009 9:42 am

Dude, you are so f**ked.

Maybe you could go to China and just eat a few meals of chinese hamsters or something.

I have no serious advice.

Mad_Haggis · Post by **Mad_Haggis** » Thu Apr 30, 2009 12:19 am

That is a big lot of tests and meds for your problem. Very sorry. Not a doctor. All I can add, is keep your chin up, part of every anti life thing is always in your head. Wake up feeling as though this is the first day of the rest of your life. It helps me get by troubling times. Haggis' cures for unknown diseases?, wearing boxers?, switch to briefs, wearing briefs? switch to boxers. Always leave commando open as an option.

RoundEye · Post by **RoundEye** » Thu Apr 30, 2009 1:37 am

YARDofSTUF wrote:Dude, you are so f**ked.

Maybe you could go to China and just eat a few meals of chinese hamsters or something.

I have no serious advice.

There’s no need for serious advice. The serious bat has slammed me upside my head hard many times this last couple of weeks.

I’m just trying to keep my sense of humor up in order to fight the depression. People can try to empathize with me on all this they want. You never get a true %100 understanding until it directly effects you. I’m finding out that this is a very nasty, non-contagious, nervous disorder disease. I’m really still trying to come to terms with it myself.

Shinobi · Post by **Shinobi** » Thu Apr 30, 2009 7:09 am

RoundEye wrote:There’s no need for serious advice. The serious bat has slammed me upside my head hard many times this last couple of weeks.

I’m just trying to keep my sense of humor up in order to fight the depression. People can try to empathize with me on all this they want. You never get a true %100 understanding until it directly effects you. I’m finding out that this is a very nasty, non-contagious, nervous disorder disease. I’m really still trying to come to terms with it myself.

I'm sorry man.. I think everybody would be thinking the same as you at this point.. "How the **ck can I stop this.."

RoundEye · Post by **RoundEye** » Thu Apr 30, 2009 11:32 am

YARDofSTUF wrote:....Maybe you could go to China and just eat a few meals of chinese hamsters or something....

Random odd thought:

I wonder if the pet store would flip their lids if they realized the rodents I was buying wasn’t for my pet snake, but really for a fresh batch of sweet and sour hamster for me.

Sorry, really odd thought but I find it rather funny for some reason. Damn, my head just ain’t right at all.

RoundEye · Post by **RoundEye** » Sat May 02, 2009 2:35 am

Random odd update:

I told my wife I keep wanting to yell “Sharron!”. I have the Ozzy shuffle down pat around the house.

I was also watching and listening to my video folders, bands like Down, Otep and Black Label Society. There’s a little bit of the old me fighting his ass off to get out. I make no apologies about it, I like the skull splitting genre of metal music too.

I am Battle Ready

[youtube] <object width="425" height="344"><param name="movie" value="http://www.youtube.com/v/NuDzOvMTx4s&hl ... ram><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/NuDzOvMTx4s&hl=en&fs=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="425" height="344"></embed></object>[/youtube]

RoundEye · Post by **RoundEye** » Mon May 04, 2009 1:52 pm

This’ll probably be my last update for a while. I’m fighting this stuff hard, I really am, but I’m going to survive if not just to piss off the entire world. FTW
That’s F**k The World for the uninformed.

http://www.youtube.com/watch?v=yJR-artQVuI (Embedding disabled by request)

MissTynker2 · Post by **MissTynker2** » Mon May 04, 2009 5:25 pm

You ARE a survivor! Hang in there! I expect you will feel like you are on a roller coaster for a bit, until the best course of treatment is investigated and employed. Keep writing! Prayers and Angel Blessings!

RoundEye · Post by **RoundEye** » Mon May 04, 2009 11:29 pm

I just HAVE to tell the world about this update:

Weebles wobble but they don’t fall down

My dad is very political, I’m not. Well……… I’m holding in my hands a letter from the US senate concerning my health issues. Not just some form, thank you note, but a letter addressed to me from the friggin United States Senate. There’s a lot more to the letter but that is the jist of it. Ironically a Medicaid card came in too, now I can pay for my meds. Remember, I was looking at a $3200 a month bill for just one medication. I haven’t even started that med yet, and I’m not looking forward to poking myself in the stomach every day either.

I’m not certain whose bells my dad rang, but he been raised to a god-like superhero status in my book. If the good die young, my bad ass will live forever.

RoundEye · Post by **RoundEye** » Mon May 04, 2009 11:29 pm

MissTynker2 wrote:You ARE a survivor! Hang in there! I expect you will feel like you are on a roller coaster for a bit, until the best course of treatment is investigated and employed. Keep writing! Prayers and Angel Blessings!

Thanks

BaLa · Post by **BaLa** » Mon May 04, 2009 11:35 pm

Not sure what to say...

RoundEye · Post by **RoundEye** » Mon May 04, 2009 11:54 pm

BaLa wrote:Not sure what to say...

Me either, but I know I have the first genuine smile on my face that I have had in months.

Gixxer · Post by **Gixxer** » Tue May 05, 2009 12:53 am

nightowl wrote:hey tobey,

Sorry to hear about your diagnosis. You know what cheers me up when I am down.....

Boobs in the face!

a man after my own heart.

mmmmmmmmmmmmmmmmmm ..... boobies

Gixxer · Post by **Gixxer** » Tue May 05, 2009 1:07 am

RoundEye wrote:I don’t know what to do at this point either, my compass is still spinning in circles about this. As far as what to say, “dude, you are so f**ked” works.

i know what you do. whatever it takes one day at a time. some days it will be from minute to minute. you need to watch this:

https://www.speedguide.net/forums/viewtopic.php?t=254142

edit: what i have read from previous posts, you are a fighter. why would that change because of this? i think the difference now is, that you have to fight harder and be stronger.

Mad_Haggis · Post by **Mad_Haggis** » Tue May 05, 2009 1:51 am

a0c2e4

Is that ace???

Gixxer · Post by **Gixxer** » Tue May 05, 2009 1:56 am

Mad_Haggis wrote:a0c2e4

Is that ace???

??? who, huh, how?

RoundEye · Post by **RoundEye** » Thu May 07, 2009 12:13 am

UPDATE:

I just received my first shots of meds, due to cost no pharmacy around here carries it. It was $2751.00 for 12 self-contained needles of the meds.

Is that crazy or what?

I could afford all my other meds but this is forcing my family and I on public assistance.

Gixxer · Post by **Gixxer** » Thu May 07, 2009 9:04 am

RoundEye wrote:UPDATE:

I just received my first shots of meds, due to cost no pharmacy around here carries it. It was $2751.00 for 12 self-contained needles of the meds.

Is that crazy or what?

I could afford all my other meds but this is forcing my family and I on public assistance.

no shame there.

RoundEye · Post by **RoundEye** » Thu May 07, 2009 9:31 am

Gixxer wrote:no shame there.

I guess not. I have to learn to ask others for help when I’m in dire straights. After hurricane Katrina I got some food from Red Cross and temporary food stamps from the state but I got more help from the people here at SpeedGuide then I did from any other agency. I’m telling you, the people here have saved my ass.

Do you realize that I have to give myself that shot everyday? Then after awhile I think it moves down to three times a week for the rest of my life.

That’s almost $6800 a month in meds. Come on man, who can really afford that?

Roody · Post by **Roody** » Thu May 07, 2009 9:33 am

RoundEye wrote:
That’s almost $6800 a month in meds. Come on man, who can really afford that?

As I mentioned previously that price is offensive. It's despicable that in a country like this one that people like yourself run into problems like this. Drastic and quick steps need to be taken to reduce those costs. We aren't talking about a new disease here. I'm sorry you have to go through this man.

RoundEye · Post by **RoundEye** » Thu May 07, 2009 9:52 am

Doing quick research into it I think its synthesized from the ovaries of a Chinese hamster. Stay tuned for my sweet and sour hamster recipe.

RoundEye · Post by **RoundEye** » Thu May 07, 2009 9:01 pm

I’m really trying to keep my personal problems off the board and contained to this thread but I am pissed.

I have to renew my driver’s license and the DMV wanted a signed form for my medical condition. The doctor refused to sign it because my equilibrium is shot. Not being able to drive again isn’t too bad, I haven’t driven for months anyway. It’s losing the giant “M” for my motorcycle endorsement that hurts so much. I guess the fact that I’ll never be able to ride a bike again is hitting home now. There was a time when you would have had to pry my cold dead fingers from the bars in order to stop me from riding, now I feel like that time has come. Keep in mind that I used to wrench on bikes for a living, at one point bikes were my life.

Roody · Post by **Roody** » Fri May 08, 2009 9:01 am

RoundEye · Post by **RoundEye** » Sat May 09, 2009 11:08 pm

Here’s a 16 page thread, written by some of the people going through it, about spinal injections derived from donated umbilical cords done in Costa Rica and Israel. Looks promising so far.

Why is it not done here? That’s another thing you can blame on former president Bush, he vetoed a bill to allow brain stem cell research.

And you wouldn’t be surprised by the amount of people complaining of the cost of meds either.

RoundEye · Post by **RoundEye** » Mon Jun 01, 2009 6:56 pm

UPDATE:

This probably includes any person or any person who knows someone involved with an autoimmune disease

I’m not one for snake-oil treatments but LDN shows some promise. It’s the best option I’ve run across in my journeys across the net researching matters.

If you think its BS please feel free to say so.

http://www.lowdosenaltrexone.org/

Gandalf · Post by **Gandalf** » Mon Jun 01, 2009 6:59 pm

Sorry to here about this, you are in my prayers

RoundEye · Post by **RoundEye** » Mon Jun 22, 2009 6:18 pm

I hate to bump this up but I have to rant,

I’m having a very hard time with this MS thing.

Since I can’t drive and I’m home damn near 24/7 I decided to take the opportunity to improve my writing skills. Well my cognitive skills have been impacted more then I initially though. As hard as I try my ability to write anything has turned to ****. I found this on Google when doing some research,

Word recall is a problem that is often reported in MS. If you suffer from this, try not to get hung up about the exact word. People are often happy to chime in with the right word anyway - let them.

From here

I realize that finding the right word is a problem for most if not all writers, but I don’t need a disease hampering me even more. Sorry about the rant but every time I try something lately it seems I hit a brick wall.

Do you want to improve the medical care in this country? Then require ALL doctors accept Medicare and Medicaid. The doctors I have found near me only take cash and insurance. Cash? Are they nuts? As y’all may remember my Rebif, the shots I have to give myself about every 48 hours, cost 2650 dollars a month. If it wasn’t for Medicaid I wouldn’t be able to afford my medication. I am beyond broke at this point and don’t know which way to turn next.

Most doctors are scared sh**less of a patient with MS. There are only couples around here that will help and take Medicaid. They are over an hour away and I’m still trying to find a reliable ride. My wife can’t miss anymore work because we can’t afford it and my mom is already giving my son a ride back and forth to school. If she isn’t there at dismissal time it causes me and my family a world of grief. They probably won’t report me but they have been known to report it to child services in the past when a parent doesn’t show up (I can understand why in some situations)

Sorry about the long ass rant but I can’t express in words how this has impacted every aspect of my life.

OSULLY · Post by **OSULLY** » Mon Jun 22, 2009 7:42 pm

Rant away RoundEye. It's suppose to be good for you. I think we can handle it, I just wish I could help. I would drive you crazy since I have the same word problem. I always have to find other ways to say things because I can't remember one freakin word. My meds cause it though and thats nothing compared to what your dealing with.

RoundEye · Post by **RoundEye** » Mon Jun 22, 2009 11:38 pm

OSULLY wrote:...I can't remember one freakin word...

We would sound like two blithering idiots if we sat down and talked to each other. To be honest I’m dealing with all this new stuff the best I can. I realize that no disease of any kind is fun to deal with but this one is nasty because the symptoms vary from person to person. That’s what scares away doctors so much. There is no cut and dry or proven way to treat it. Sure there are some common symptoms but symptoms can vary so much because it is a nervous disorder. Lesions can form on the brain, brain stem or the spinal cord. Unfortunately on me all three areas have multiple (uncountable) lesions and have been impacted.

It still is fairly new to me and as soon as I get an experienced doctor with MS maybe I’ll get some more answers to my questions. Online forums can only help so much. I need answers to my specific problems.

So yeah, I go through the fear of “what’s next?” or being pissed off because I can’t do what I used to do or even the solitude of sitting home by myself all day. I know the solitude should be enjoyed at times, but trust me it gets old after awhile.

I know I’ll get somewhat use to it after awhile but for now it’s still fairly new to me.

PsykoPenguin · Post by **PsykoPenguin** » Wed Jun 24, 2009 8:41 pm

Russell · Post by **Russell** » Fri Mar 12, 2010 6:30 pm

.....

RoundEye · Post by **RoundEye** » Fri Mar 12, 2010 11:57 pm

Russel, I feel for ya man, I really do.

Here’s my latest struggle. I was given Social Security. I thought my problems would be over when I got SS but they have just begun.

Medicare doesn’t kick in for two years after you are granted SS. Medicaid (the state) was paying for my meds. Now that I have been granted SS, the state cut me off. They said I should be able to pay for my meds myself since I have an income now.

My meds total about $4800.00 a month. I’m on about 14 different meds to try and get my multiple sclerosis under control. The worst of all is my Rebif Tritration, which is a shot I have to do three times a week, the cost is over $2800.00 a month.

I get a whopping $1500.00 a month from SS. Now I’m expected to pay for my own meds, doctor visits and medical testing until my Medicare kicks in, in two years. This all went down last week do I don’t know how I’m going to pay for it all.

RoundEye · Post by **RoundEye** » Sat Mar 13, 2010 12:02 am

UbahPenguin wrote:

Thank you. I really like that picture.

SG Broadband Community

I have Multiple Sclerosis

The doctor refused to sign off on my DMV form.

Some of you affected by this disease may find this interesting