Preparing for Mito doc - Multiple Sclerosis Message Board

Wallis86 · 09-01-2008, 10:16 PM

So I'm getting ready to go see this new doctor at the Cleveland Clinic to figure out about Mitochondrial disease. (I started out with a dx of "under the radar MS" which is why I ended up on these boards, and now I just can't leave!) My question is, how should I prepare for this new doctor besides bringing records? Those of you who know me can help me out with specific things, otherwise what kinds of general things should I do and keep in mind at this appointment?

I've been to TONS of doctors, but I really want to do this one right, asking the right questions etc especially given the rarity and severity of this potential dx. Your help is GREATLY appreciated.
Wallis

april1848 · 09-02-2008, 04:57 PM

Good luck, and welcome to Cleveland! I'm glad you ended up on this board, and there probably isn't a mitochondrial one anyway!

We'll take you!

I'm not sure what kind of advice to give, but you might want to just lay it out on the line, and emphasize to the doctor that nobody has figured it out. He or she may see it as a challenge, like Dr. House! The Clinic is definitely a good place for uncommon or strange diagnoses (no offence, dear!) so I think you're at a good place. I would be perfectly up front with him about the heck you've been through and all around the country seeking a diagnosis. Make them know that you're not a number, and that you need to know.

*If you have time, check out the Art Museum, even though much of it is under construction. It's free, parking is cheap, and totally accessible. It's one of the best, and just a hop away from the Clinic!

Nenu · 09-02-2008, 05:28 PM

Good luck Wallis. I can't wait to hear how this one pans out for you. You've been suffering so much and it's unfair.

I'd be honest with who you see, as April said. Just lay it all out on the table. Stress that you can't go on living like you are now and need answers.

Bearygood · 09-02-2008, 07:20 PM

Hmm. Well, considering your very loooong history of having so many things wrong that COULD be related, maybe some sort of list or even maybe spread sheet with an approximate date/year, what your sx were, doctor(s) you saw and then if there was a dx, what it was and what course of action (medication, etc.) was taken?

What do you think? Might this help or is there more specific input you're looking for?

Wallis86 · 09-02-2008, 08:02 PM

The spreadsheet is a good idea, I should start on that seeing as it will take me until I leave to finish! At some point, I'll lay out for you guys my list of sx to make sure I'm covering everything. I don't want to leave anything out.

April, I'll certainly inform this doc about the hell I've been through for the past decade, and maybe chain myself to him until he figures out what's wrong with me

I'll also stop by the Art Museum!

I have two pieces of news, one is a sx, one is a result. The PFT seems to have come back normal, I don't know what that really means as far as what's causing my SOB because it still happens, especially with exertion. I've been having one heck of a time with neuropathy I think. I have really annoying burning in my hands and feet. It was originally on and off, but it's gotten fairly constant. What can I do to make that feel better???

I don't have a migraine per se today, but my eye is killing me, hurting behind my eye and when I move it. Grumble.

I'm going to start that list right now!