Lucky One, I Guess

[ericppl]

Hello everyone -

I was dx'd in 3/11, after I had some strange balance issues starting the previous December that lead to an MRI that led me to an MS specialist.

My balance issues resolved themselves shortly after I went to see my primary about them.

I started Rebif in June of the same year. Apparently I'm one of the lucky people that are symptom free. I go to the talks that the drug companies sponsor, and feel a little out of place since I don't really suffer from any symptoms. To me, it's like the disease that isn't really a disease.

I'm also a pilot (for fun), which is something I really enjoy. My dx immediately invalidated my flight medical (you need a pilot certificate and a valid flight medical to fly). I have since gone through the hoops to get what's called a special-issuance medical, which is the last chance for a flight medical. This has to be re-approved every year.

Otherwise, the MS really hasn't affected my life much. My MS doc (one of the best in the country) seems to think that I won't have any MS-related issues.

Anyway, that's me.

Eric

[Mable]

Welcome Eric. I'm glad to hear your story because people with milder cases so rarely hang out on message boards and chat rooms. It's encouraging to newbies like me who don't know where my disease will lead me. Undramatic stories are refreshing. Hope you keep posting from time to time.

[ericppl]

You raise a good point. I think that is likely because the people with MS - which for lack of a better term are "afflicted" - in other words, have significant symptoms - are probably trying to find ways around those barriers.

For example - if I had some sort of symptom that was debilitating, I would likely spend a lot of time on here. Or, if I had ongoing symptoms from the MS, I would see how others manage it. Since the MS doesn't impact my life in any way, there's not much incentive.

I haven't been on here since I created my account last May. I only came on here because I wanted to read the latest on Gilenya (which doesn't seem to be issue free enough yet to switch from Rebif). Rebif apparently is reducing my brain lesions, so I think I'll stay with it for a while.

I'll try to come on here and post more, but I suspect I would just annoy people that are "afflicted" by pointing out that I don't have any issues.

I don't know, and I supposed I'd want to hear more from others.

Eric

[CougarMama]

Hi eric! Thanks for sharing your story. I'm not horribly afflicted but have had my moments! That being said I think people would be happy to share your triumphs as well. The longer you go relapse free the better you are and it gives the rest of us some hope that we might eventually be the same. (your balance issues sounded like a relapse, correct me if I'm wrong!)

Take care and i wish you continued good health!

[Alicious]

Welcome, Eric! I am glad to hear you are doing so well, and I hope you can get approved to fly again, and quickly.

I think you are right about people being less likely to come here when the disease is treating them well. Except for my vision being blurrier on one side (and I'm still legal to drive without glasses), day to day I am 99% physically the same as I was before diagnosis, and it is now 5 years after the actual onset of MS with optic neuritis.

Not everyone is as lucky, and hopefully we all maintain as good of health as we can, but people are definitely more likely to post when they are hurting or need help, and of course we never know when that could be us.

That being said, I'd imagine posts from those of us who are doing well might be very welcome to newbies who are terrified about what the disease means. I know when I was diagnosed all I could think about was Richard Pryor, and I didn't know that he got hit hard and wasn't the norm, especially in an era when we now have DMDs. Maybe giving people some hope without blowing too much sunshine would be useful to some folks?

[ericppl]

Thanks for all the kind and welcoming words.

Just to clarify - I do have a valid flight medical, and have been flying, something I really enjoy. I have to renew it in August, but I don't expect any issues with that. It helps when I write the letter my doctor signs (he wants me to do this because he doesn't know what to say in it).

Someone had mentioned the dizziness being a relapse. It's unclear, as this was before I went down the four month road of being diagnosed. Previous to that, I had no MS-like symptoms. It also resolved within a couple weeks on it's own.

It certainly started me down the path of finding the problem - which is a great thing, since the Rebif seem to be working well. I had an MRI in November, and my lesions had actually shrunk!

So - the question I pose is how I can put these little rays of sunshine out there without frustrating people or making it seems as though I'm being - for lack of a better term - cocky.

Should I just respond to peoples various posts with rays of sunshine telling them how great it is that I'm symptom free? You can see my dilemma. I guess I'm looking for advice from those more experienced with these forums to figure out way to balance the good without annoying people by saying "look at me, I don't have any symptoms."

Not sure if that makes any sense, but I'd love to hear some ideas.

Thanks,
Eric

[CougarMama]

Hi Eric! I understand your dilemma but think you could certainly talk about your experiences in getting diagnosed, your experience with Rebif and any others that might be relevant. No need for rays of sunshine! Most people want honest experiences and everyone here is affected differently. (for some the emotional adjustment to the diagnosis can be very traumatic.)

Hope to see you on the boards!

[Alicious]

Oh, glad you are already flying, then, and hope the renewal is quick and painless!

FWIW, the way I handle it is to discuss flares I've had, as well as my recovery when it is warranted in the thread. If it is a thread about the horrors of MS and how awful someone is doing, I offer support, not tales of my disappearing lesions. If it is a thread about DMDs, I talk about my experiences with them. If it is a thread about being scared for the future, I talk about my experiences as one real possibility for the future. Basically, it's case by case, but of course I never want to be, well, cocky.

You seem to have a good sense of self awareness and compassion for others, based on what you are posting here, so if you choose to post more just be yourself. You can certainly give input and support with out bragging about your health (not that you should ever have to be ashamed of it or hide it, of course!).

[ericppl]

Thanks for all your thoughts and suggestions.

I guess I'll see how it goes.

Eric

[hunterd]

WELCOME ERIC!!!!! Please post, you have a different story to tell. Maybe give a " heads up " so everyone knows what they are in for. You can be the ray of light in the gloom and doom of many ms stories. Good luck on your flight renewal.