I have Multiple Sclerosis

RoundEye · Post by **RoundEye** » Thu Apr 09, 2009 3:42 pm

MS, No fancy title, that’s it, my brain is trying to eat my spinal cord. Am I pissed? You bet, I’m only 43 and I’m f*****.

I went in for a brain MRI a few weeks back and in a doctors visit yesterday I was told I had 1000’s of lesions on my brain. I have to have another brain MRI, a spinal tap and quite possibly a brain biopsy performed.

What I’m most pissed about is the state of medical care in this country. I had to wait five months for my first appointment. Due to the length of wait, I may be stuck walking like a damn drunken, retarded monkey for the rest of my life because of irreversible brain damage.

Doctors need to get paid, but people shouldn’t have to wait months for proper health care either. There has to be a balance someplace.

You may be in good health right now but should you get a life altering illness that in itself will kill you, the wait that is. You have to wait months for healthcare and it will bankrupt and stress out your family.

Easto · Post by **Easto** » Thu Apr 09, 2009 3:43 pm

I am so sorry. I will say a prayer.

YARDofSTUF · Post by **YARDofSTUF** » Thu Apr 09, 2009 3:50 pm

That sucks. What caused the 5 month wait?

Prey521 · Post by **Prey521** » Thu Apr 09, 2009 3:51 pm

Sorry to hear that Roundeye.

Do you live in Canada or something? My cousin moved up there a long time ago when I was a kid and he's told me nothing but nightmare stories about the healthcare up there. My aunt was diagnosed with MS in her early 40's, about 5 yrs ago, and she's been doing pretty well. Apparently, early to mid 40's is when one is most likely to contract the illness from what she's told me. Good luck.

De Plano · Post by **De Plano** » Thu Apr 09, 2009 3:51 pm

Well that sucks.

CiscoKid · Post by **CiscoKid** » Thu Apr 09, 2009 3:56 pm

Jbrazen, RE is from the big easy, New Orleans

JawZ · Post by **JawZ** » Thu Apr 09, 2009 4:23 pm

I feel awful for you Tobey. I also feel mad and would love to lash out.

So I'll just say this, even with MS, you are still about 95% more intelligent than the folks here on SG who oppose Nationalized Healthcare in the US.

I remember the figure that a certain someone put up....we spent $900 Billion on Medicare, Medicaid, & Social Security last year.

Well.....now that we have spent a growing total of $14 TRILLION dollars on the rescue of our financial system (government casinos inhabited by gambling addicts), I think it's time to gently tell these people that they are wrong. $14 Trillion dollars in less than 6 mos....and you have to wait 5 mos to get an MRI.

Well, as they also said, it's probabaly because you don't have your own priorities straight....you probably have a cell phone and all this time you could have been saving money to pay for your own care. Yep....I'm all wrong. I got it all wrong.

Well, maybe these folks will be in here to wish you well while you go through this painful journey.

Well..all I can say is FIGHT!!!! Don't let this **** get you down.

Prey521 · Post by **Prey521** » Thu Apr 09, 2009 4:33 pm

CiscoKid wrote:Jbrazen, RE is from the big easy, New Orleans

Thanks Roundeye, does anyone else in your family have MS?

CableDude · Post by **CableDude** » Thu Apr 09, 2009 4:41 pm

downhill · Post by **downhill** » Thu Apr 09, 2009 4:44 pm

Wow, Tobey.

I'm so sorry to hear this.

I agree with UOD...Health care is absolutely wonderful in this country. If.....you can afford it and if you don't live in a rural area or one that's been experiencing and economic hardship for any length of time.

RoundEye · Post by **RoundEye** » Thu Apr 09, 2009 5:40 pm

JBrazen wrote:Thanks Roundeye, does anyone else in your family have MS?

Not that I’m aware off, the doctors have no explanation of what caused it. There is no way to cure it, only treat it from what I know at this point.

The wait time is because I’m from a larger city. Lots of sick people and they are all referred to Charity hospital.. if they have little or no money. Which the hospital system is still in shambles after hurricane Katrina. They have lost all my medial records after the hurricane so I have to basically start over.

I and some of my friends and family thought I had a stroke the way I am walking and talking. So I started the LRS program to try and retrain to get back to work. I absolutely CAN’T stand sitting at home. I want to work and now I have to put that on hold because of this illness.

Also I think I’m worse off then they are letting on. When I told the doctor about my initial wait time he gave me his personal pager number ( that is very rare in a public hospital). He told me to go to the emergency room and call him. If I have to wait more then two weeks for my next appointment. He’s going down to the emergency room and bust some balls, I just know it.

I don’t know what I’ve done in some past life but I doubt it was anything to deserve this.

24giovanni · Post by **24giovanni** » Thu Apr 09, 2009 5:53 pm

Sorry to hear this. Prayers to you.

Ashdaw · Post by **Ashdaw** » Thu Apr 09, 2009 7:02 pm

I understand your anger at both the time waiting to see a Doc and also at the Disease. I wish you strength to fight this insidious monster and fortune that allows you a quicker access to medical help.

Your name will be on my tongue when next I pray to God RE.

Roody · Post by **Roody** » Thu Apr 09, 2009 7:53 pm

I'm really sorry man.

Post by **Philip** » Thu Apr 09, 2009 8:25 pm

Wow, I am really sorry to hear this...

Any chance it's misdiagnosed ?
Even if it's MS/CIS, there are treatments to control it and delay any further damage, you'll have to stick to the meds though.

Chris · Post by **Chris** » Thu Apr 09, 2009 9:00 pm

Sorry to hear Tobey
Teirney has MS, has for years.
The absolutly best medicine is to be in high spirits.
When she is down and stress get in the way, she is at her worst.
The really f^cked up days are riding her mountain bike in the morning and having to use a walker to get around the house in the afternoon.
MS is one of the most evil diseases there is....IF you let it be.

Thoughts are with ya

JC · Post by JC » Thu Apr 09, 2009 9:01 pm

I don't even know what to say. I can't even imagine the emotional roller coaster you and your family must be on.

My brother you and your family will be in my prayers.

Debbie · Post by **Debbie** » Thu Apr 09, 2009 9:07 pm

Hey Toby. I am so sorry to hear this. Stay on the up an up and I will definately keep you in my daily prayers.

David · Post by **David** » Thu Apr 09, 2009 9:21 pm

Damn it, Tobey.

The disease runs in cycles, you will be fine, then it will worsen. Expect to be placed on meidcations which are immuno-supressive.

Humboldt · Post by **Humboldt** » Thu Apr 09, 2009 10:35 pm

JC wrote:I don't even know what to say. I can't even imagine the emotional roller coaster you and your family must be on.

Agreed. Very sorry to hear about the diagnosis but hopefully there are ways to keep it in check.

Paft · Post by **Paft** » Thu Apr 09, 2009 11:07 pm

...goddamn. That's ****ed up.

I am so sorry, man.

MissTynker2 · Post by **MissTynker2** » Thu Apr 09, 2009 11:11 pm

Life at times seems to stack on more than one can bear. What I have discovered however, is that these burdens are usually placed upon the strongest of spirits and shoulders. Fair? Never...you have had more than your share.

Use that anger to best benefit you! Keep fighting! Write about it, remember how healing writing can be?...share your experiences with others, and reach out to them, for theirs.

Prayers for you and yours.

Gixxer · Post by **Gixxer** » Thu Apr 09, 2009 11:26 pm

sorry to hear

Mad_Haggis · Post by **Mad_Haggis** » Fri Apr 10, 2009 12:52 am

Roll with the punches?, It's you not me. Very Bad.

Can I add a little MS story to this thread?

Mad_Haggis · Post by **Mad_Haggis** » Fri Apr 10, 2009 1:01 am

Maybe not. Just wish I could do more.

RoundEye · Post by **RoundEye** » Fri Apr 10, 2009 2:04 am

You wanna know what’s really bad about it all? People say to do what makes you happy to lift your spirits. Well riding and wrenching on bikes is what I like, that’s what makes me happy. Thing is my balance is so screwed up, I’ll probably never ride again. I would bet I have over ten grand in Snap-On tools easy, all getting dusty in my tool box right now. I’ve been all but banned from driving by my mom and wife. I drive my son to school and pick him up, that’s it. The only people who have less movement then me right now are death row prisoners.

Philip wrote:…Any chance it's misdiagnosed….

A small bit, that’s why they want a couple more test. Doctor said there is a 90% chance I have MS.

Sitting in my dad’s garage, that box is packed full of tools and I haven’t touched it in months.

RoundEye · Post by **RoundEye** » Fri Apr 10, 2009 2:06 am

Mad_Haggis wrote:...Can I add a little MS story to this thread?...

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

RoundEye · Post by **RoundEye** » Fri Apr 10, 2009 2:19 am

Chris wrote:Sorry to hear Tobey
Teirney has MS, has for years.
The absolutly best medicine is to be in high spirits.
When she is down and stress get in the way, she is at her worst.
The really f^cked up days are riding her mountain bike in the morning and having to use a walker to get around the house in the afternoon.
MS is one of the most evil diseases there is....IF you let it be.

Thoughts are with ya

I can relate to the walker, I have to use a cane at times myself. After all the crap I’ve been through in life, it’s a damn miracle that I’m just starting to use a cane.

The main reason I started using a cane is so that people don’t think I’m drunk when walking around. It’s used mostly to help me keep my balance, but I use it mostly to pick myself up from the ground when I fall, which happens quite a bit.

I can relate to her on the MS, I’m just starting the diagnosing and treatment myself.

Jamie_R · Post by **Jamie_R** » Fri Apr 10, 2009 7:58 am

prayers for you brother - stay strong.

koldchillah · Post by **koldchillah** » Fri Apr 10, 2009 9:13 am

ugh... what a bummer.

We wish you the best in fighting this disease. Stick to the meds and hopefully you have more tolerable days than bad ones.

RoundEye · Post by **RoundEye** » Fri Apr 10, 2009 11:45 am

MissTynker2 wrote: Life at times seems to stack on more than one can bear. What I have discovered however, is that these burdens are usually placed upon the strongest of spirits and shoulders. Fair? Never...you have had more than your share.

Use that anger to best benefit you! Keep fighting! Write about it, remember how healing writing can be?...share your experiences with others, and reach out to them, for theirs.

Prayers for you and yours.

Thank You and thanks everybody else too.

Yeah…… catching this disease sucks the big one. My memory has been affected big time. There are things I want to say in a post or real life and I just draw a blank. A post takes me about a half hour to compose as it is. I feel like a deer stuck in the headlights sometimes, just sitting around with a stupid look on my face.

JawZ, thanks for taking me off your ignore list. There are times I wanted to ask you a question but couldn’t. I don’t think either one of us thinks the other is a bad person. Sure we don’t see eye to eye at times but that is life, it’s damn near impossible to get along with everyone all the time. To be honest, I don’t like being ignored by one of the few people I can have an intelligent conversation with. I won’t have many more at the rate I’m going.

MadDoctor · Post by **MadDoctor** » Fri Apr 10, 2009 11:56 am

RoundEye wrote:I don’t like being ignored by one of the few people I can have an intelligent conversation with.

I don't ignore you... I am just incapable of having an intelligent conversation.

Sorry to hear. My best thoughts are with you.

MD

JawZ · Post by **JawZ** » Fri Apr 10, 2009 12:08 pm

RoundEye wrote:I won’t have many more at the rate I’m going.

I refuse to believe that and so should you.

You are newly diagnosed correct?

http://www.nationalmssociety.org/living ... index.aspx

While there is no cure, you can manage the symptoms.

How do you feel about clinical trials?

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

RoundEye · Post by **RoundEye** » Fri Apr 10, 2009 12:18 pm

koldchillah wrote:ugh... what a bummer. We wish you the best in fighting this disease. Stick to the meds and hopefully you have more tolerable days than bad ones.

Do you remember my Mustang from when y’all came to town? Well there’s no way in hell I could drive a five speed right now. I have a digital body in an analog world. It’s either on or off, gently slipping out the clutch won’t happen.

I have a little 86 Chevy Sprint hatchback that I use to put the garbage out and pay around in the yard with. It’s a 5-speed and I just dump the clutch and go or sometimes kill the motor too.

triniwasp · Post by **triniwasp** » Fri Apr 10, 2009 12:24 pm

Man, I'm so sorry to hear that bud. Now you must empower yourself by learning all you can about your disease. One thing I know for certain is that you must become your own advocate. Also, keep your mind open about alternative therapies if traditional ones don't satisfy you.

I'll send some positive energy your way.

RoundEye · Post by **RoundEye** » Fri Apr 10, 2009 12:30 pm

JawZ wrote:...You are newly diagnosed correct?...

Yes

I haven’t started any medication yet. Hopefully I will get better some, I have no clue what to expect.

My wife and I are always kidding around about flying green monkeys, like those in the Wizard of Oz (even though those are gray). Anyway, she said now they are eating my brain.

It may sound odd to some people about us kidding around about all this, but her other option is crying. I’d rather hear her laugh, I’ve seen the tears and I don’t like seeing her cry at all.

RoundEye · Post by **RoundEye** » Fri Apr 10, 2009 12:50 pm

John wrote:...and won't ever forget how you've helped me in the past...

I’ve given help to people here when and how I could. I also received a tremendous amount of help from the people here after the hurricane.

But to be honest I feel like I’m becoming selfish and self-centered right now. No one can overcome this but me and I need to concentrate all my efforts on getting better.

Miss Tynker hit the nail on the head when she said writing does make me feel better. I’ve expressed that sentiment before. When I was looking for work I was trying to train in some type of inside job where I would sit down. Maybe I could get some type of data entry job. I’ve never had a job where I sat in one spot and worked all day, the thought of that freaks me out. I’m not an inside person. Even when I was working on PC’s I was running service calls, I was rarely in one spot, one location all day.

MissTynker2 · Post by **MissTynker2** » Fri Apr 10, 2009 1:13 pm

Change is never an easy road, and of course there will certainly be some in your life.

Knowledge is power...the more you have...the better equipped you will be to handle that. Your diagnosis, testing, treatments, and medications are not yet complete? Then you will have all the information to start a battle plan..and you will

MS can go into remission as I understand it...and lie dormant for periods of time, with short term memory loss returning as well. We had a player on our shuffleboard team who suffered from MS...there were weeks on end...that you would never even guess she had it..then a few when she could hardly walk...but still she played! ...we just had to help her to the table and make sure she had a good grip!

You have that type of spirit RE...but at the moment...you are still in the "unknown powerless zone"....except

Keep writing!

RoundEye · Post by **RoundEye** » Fri Apr 10, 2009 1:39 pm

MadDoctor wrote:...I don't ignore you... I am just incapable of having an intelligent conversation...

Don’t worry about it, I’ve never held you to any standard of intelligence anyway.

Sava700 · Post by **Sava700** » Fri Apr 10, 2009 1:41 pm

sucks...