Awaiting Prognosis Looking For Advice From MS Patients

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Awaiting Prognosis Looking For Advice From MS Patients

Postby kyleb » Sat May 03, 2008 11:37 am

I'm 26 yrs old going on 27 w/in the month.

Just this past week I've had an MRI done as my neurologist suggested. Both brain and spinal MRI's were attained and I'm currently waiting to hear back from my Neurologist. I was wondering if people that have been diagnosed with MS can weigh in on my current condition (outlined below) to see if these were some of the early symptoms you've had before you were diagnosed.

Here are some of my afflictions:

Since 8/07 I've been suffering with these symptoms that seem to be getting worse.

- A lack of balance and coordination (particularly walking up and down stairs - spiral stairs are very disorientating)
- Running has become quite hard. I constantly seem to shuffle my feet. Also when I walk over long distances I find that I shuffle my feet more and more. My legs feel "tired" and "weighted down".
- Some bladder difficulties (not being able to totally purge all fluid)
- I feel very awkward trying to run (as if I do not have total control of where my feet are striking)
- Frequent headaches (I've had them my whole life but lately they are constant - I'm never without a headache it seems)
- After any type of exercise I feel very "out of it" very light headed/dizzy with very minimal control of my legs. One way of describing them is that they feel like Jello. It even happens if I'm peddling on a stationary bike for any distance.

I find that I'm constantly having to be conscious of every step I take. It sounds odd but I'm always trying to be more mindful of exactly where I'm putting my feet or I will stumble or shuffle.

Right now I'm apprehensive of the MRI results. From what I've been able to find online I honestly believe I may be diagnosed with MS.

What does everyone here think?
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Postby Terry » Sat May 03, 2008 2:33 pm

It all sounds pretty familiar. When do you expect to hear from your neuro?
You okay?
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Postby CureOrBust » Sat May 03, 2008 5:57 pm

A lot of your symptoms are familiar, but I personally noticed these ones much much later. The first indication to me that something was wrong, was more minor; tingling skin.

Also, playing the numbers game, most people have Relapses. Have you found that the symptoms came and went, or are just slowly getting worse?

When I was finally being considered for MS (10+yrs after first my symptom) , I searched the net, and found a list of differential diagnosis, and worked through them with my GP.

Good luck
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Postby Artifishual » Sat May 03, 2008 6:16 pm

kyleb
As stated before hand all sounds very familar with me too , all except the headaches. I have never had that, but many other symptoms. I have only been dx for about 1 1/2 yrs or so. I was running about seven miles a day up until about 5 yrs ago when it just got to hard. My legs got to where they were like cement, so I stopped running. Even ran some half marathons. Goodluck. I hope your dx is negative keep us informed how it goes. arti
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Postby kyleb » Sat May 03, 2008 7:26 pm

No results back from the MRIs yet. I'm going on vacation this upcoming week so I don't expect to hear back for a while.

The more I started hunting around on the net today the more depressed I was getting. I took to youtube and found a *TON* of videos from people suffering from MS talking about living with the disease.

This video by Kelli http://youtube.com/watch?v=-BGBSsKBrbI (and others I've watched) hit me like a ton of bricks. I don't think I even need to be told my dx from my doctor.

Knowing this *ahead* of time (as I believe it to be) what are my best options? I'm very concerned about the monetary hit I will take if I am to have this disease, esp with health insurance. I'm in MA right now and have a lousy state sponsored plan that I'm locked into until 11/08. I work at a 3 man company as a web developer and I'm sweating bullets over here.

Does anyone have any experience with insurance and MS? Should I be looking into disability insurance / life insurance BEFORE I get my dx? Any advice pertaining to this would be worth its weight in GOLD.

Thanks everybody for giving me feedback.

@Artifishua as an aside, if you were an avid runner before MS what are you able to do now to keep your physical conditioning?

@CureorBust - no relapses yet, just seems to be getting progressively worse. Right now I feel day to day like I'm fine. It's only when I try to do physical exertion running/walking far distances/cardio exercise that I can feel the effects. I think I'm figuring out its MS about 9 mo from when I first started feeling my initial symptoms which ironically was during a kickball game when I was playing catcher and I was tripping all over myself.
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Postby Terry » Sat May 03, 2008 8:15 pm

On a personal insurance policy app, not only will you be asked what you have been diagnosed with, but you will probably also be asked if you have undergone any testing. This would more than likely hold up the policy placement at least until the test results are in. Your best bet is a policy through an employer who already is providing coverage for other employees, where your pre-existings should not keep you from coverage.
Maybe this varies from state to state? This is my understanding. I am in Ohio.
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Postby Artifishual » Sat May 03, 2008 8:18 pm

I continue to run but not nearly as much, I let my body dictate what I can do. Mostly two or three miles but not all running.
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Postby cheerleader » Sat May 03, 2008 8:20 pm

Kyleb-
If this is any comfort, my husband knew an hour after his MRI that he had MS. After the dye was injected for contrast, he immediatly knew he was in trouble...the techs called his doctor and when he saw his 20 lesions, it was confirmed. After a lumbar puncture, he was on IV steroids the next day.

Most folks with MS hear pretty quickly (read Red Penguins experience), because neuros don't want to be sued, and they want to get people in the midst of an MS flare diagnosed, informed and on steroids or CRABS right away.

Go on vacation and try to relax. There are a myriad of explanations for your symptoms (I am a migrainer with low blood pressure and I've had a few of your symptoms, nutritional deficiencies, chronic fatigue, etc), Scaring yourself by watching youtube videos is not going to help you.

As my mom would say, you are "borrowing trouble."
I truly wish you the best-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Terry » Sat May 03, 2008 8:43 pm

Yeah, Cheer, I think you are right. If I remember correctly, I got a phone call the same or next day. The results were electronically sent to the neuro and he called right away.
Kyleb, can you call the neuro and maybe have a happier vacation?
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Postby kyleb » Sat May 03, 2008 9:04 pm

Terry - definitely don't want a positive diagnosis ruining the vacation (I know I wouldn't be able to get it out of my head) but I'm good @ ignoring stuff :)

Thanks everyone for the positive guidance.
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Diagnosis Recieved

Postby kyleb » Sun Jun 08, 2008 5:14 am

My premonitions were spot on. I got diagnosed with MS on 6/6.

The gap between when I had the MRI's done - 4/30, and when I was told - 6/6 was concerning. I got no follow up from my doctors office at all and it was only when I called requesting a follow up appt that they brought me in the soonest they could get me in (about 3 weeks after I returned from vacation). The doctor was very apologetic and I do like him as a doctor, but I was upset about the whole ordeal.

I'm blessed with an amazing girlfriend and strong family support system so I am confident that this disease won't slow me down. I'm going in for a steroid treatment next week via an IV that's supposed to help, then I have to decide what type of medication I should start.

Avonex, Betaseron, Copaxone, or Rebif?

So far Copaxone looks the most appealing because of it's subcutaneous delivery.

Can anyone give me feedback on which drug is best to _start_ with?

I hope to be an active member of this community from here on out. Thank you.
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Postby jimmylegs » Sun Jun 08, 2008 6:29 am

sorry to hear about the dx kyle. welcome to the community regardless! there are lots of folks on here that can help you with your starter treatment, and there must be plenty of copaxone users that can tell you how they felt about it.. what does kelli take again (coincidence - i watched all her youtube videos not too long ago and stuck em up in the daily life section)

well anyway. my docs wanted to start me on rebif, but i didn't take anything at all in the end so i can't offer any useful feedback about what it's like as an introductory experience - sorry :(

good luck with everything!
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Beginning the program

Postby lyndacarol » Sun Jun 08, 2008 7:01 am

As I have said to others, you are at the beginning of a long, tough journey. I think it is important to determine your starting position with a thorough physical examination.

As to treatment, I am not a believer in any of the CRABs, based on my own experience with C (Copaxone), no experience with R (Rebif), a long 7 years with A (Avonex), and 4 years of B (Betaseron). In my opinion, these drugs were of no benefit to me. My doctor says, "But we don't know how bad you would be right now if you hadn't taken them."

In brief, here is the action plan I recommend:

First, take a deep breath.

Second, start your personal MS library with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is the good second book to have.

Third, have a thorough physical exam and ask for any kind of blood test possible (including a fasting serum insulin test--I am known at this website to be obsessed with insulin!). If you have an MRI, ask that the radiologist make a special note of the sinuses. Many with MS report sinus problems (including myself). Ask for a copy of all your test results for your own file.

Fourth, from this day forward, eat a healthy diet. In my opinion, this means removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour (in fact, all carbs so far as possible) from your diet.

The best to you in your journey; don't forget to share your discoveries along the way with your friends here!
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Postby cheerleader » Sun Jun 08, 2008 10:13 am

Dear Kyleb,
I am so, so sorry to hear of your diagnosis. I was really hoping you weren't right....but you were. Damn!

You will probably have alot of anger now, about waiting so long for a dx, about being sick and so young, about alot of stuff. Keep talking, writing on the boards, and keep being proactive. You knew, internally, you had MS. You will also know how to deal with it. You're a wise young man. Sounds like you have a good support system. Keep sharing.

LyndaCarol is spot on about diet. This, and nutritional supplements, can make a huge difference. Stay active, as much as you are able.

My husband is doing well on Copaxone. No new lesions or progression after a 15 months. Keep reading up on all the meds and go with your gut, you've been right so far!

hang in there-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Thank you everyone!

Postby kyleb » Mon Jun 09, 2008 6:47 am

Thank you for the book suggestions I've just bought a lot of material.

I have a friend with MS and I'm going to speak with him tonight about the diagnosis and hope that he will be a HUGE resource to me. He's already an inspiration - He just recently ran the Boston Marathon this year.

My next big task is going about telling my employers about my situation which I'm struggling with trying to find the best way to tell them. I'm a web developer by trade and I work with a very small team of 2 other developers. I've never worked for a "big company" so I'm going to have to figure out my situation when it comes to work. Does anyone know of any good resources for "breaking the news"?
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