Saturday, November 19, 2005

New General Doctor Set Up

On Friday the oldest two kids and myself went to our first appointment with the new PCP doctor. I figured it was better to get in now and get set up that way if anyone needs anything later then we'll be able to get right in. It was an interesting time to say the least.

I had called ahead when I set up the appointment and asked specifically if the doctor had experience with MEN2a. I was told that he DID and that is why I made the appointment. When the doctor walked into the room the first words he said were "Well I looked this up on the internet....." and to be honest I wanted to run right then and there. The truth is though that we really aren't going to find many doctors with working knowledge of MEN2a. It's something we can expect from Endocrinologists but not General Practioners. So I decided to give him a chance.

To be honest, he did a great job. He asked lots of questions, listened to what I said, acknowledged that I know more about this than him (which I've found is hard for alot of doctors because THEY need to be the experts even though it's just not feasible), asked for the URL to this blog, and put me at ease that he would do all he can to learn how to care for us. After that he started examining us for the "normal" things.

We found out that Sis lost 7lbs somehow so we have to test her thyroid levels and we're also running an iron test on her. We need to figure out why she's losing weight because her eating habits haven't changed at all and without a thyroid losing or gaining weight is an issue. So some bloodwork and we should know what's up with her by the end of next week.

I found out that I'm just a big train wreck. LOL. We found that some of the pain I'm having in my hands is from carpal tunnel syndrome. So I will have to wear lace up braces on both hands at night to try to eleviate some of the pain. The rest of the pain in my hands and the pain in my legs stumped the doctor somewhat. He ordered a ton of bloodwork on me to make sure it's not a deficiency somewhere first. Then he recommended craniospinal therapy (which I'm still reading on) to hopefully help with some of the pain and the constant headaches. Other than that he said that MAYBE my pain in my legs could be from Degenerative Disc Disease but we're waiting until everything else comes back first. Even if it is, I'm not worried. Heck, as much as I've been poked, prodded, cut open, and hacked up from cancer and so on this is the least of my worries. LOL.

Big B gained a pound and I should have thought to get his current thyroid and calcium levels but I didn't.

Oh yeah, I also tried to get the kids in with a ped endo and was told I had to take their records to the office so they could copy them and THEN they would contact me for an appointment after the doctor read them. *sigh* I had an appointment for the kids already with another ped endo but had to cancel because of the new insurance so I'm hoping I'm not going to be made to regret this. BTW- I did take the records to them yesterday so I should/better hear back next week because this isn't something I'm willing to play with. If the kids can't get in by the second week of December at the latest then I'm having the general doc run the bloodwork for Bret as well.

Next update- any bloodtest results or scan results.

4 comments:

singlemamma said...

things seem to be rolling along and again you seem to have found your place. It's important to have doctors that know what they are doing but when they don't they admitt to it and learn all they can. I think you're going to end up liking this one :)

Kari

Michael said...

Hello,
I'm reading your blog with great interest. I discovered it while doing a search for blogs on parathyroid cancer.
First off, let me say that I have parathyroid cancer, which was diagnosed in 2002.
Second, I can't stress enough that this is an extremely rare illness, and that you'll scare yourself silly if you jump to conclusions and attempt to self-diagnose it.
In one of your blogs, you mention that "parathyroid cancer means chemo and rad therapy."
No, it does NOT always mean this.
The FDA recently approved a drug, now marketed as Sensipar and made by Amgen, that lowers serum calcium by disabling the chemical structure of PTH.
I'm not sure if I'm getting the science right, but it doesn't matter: I was part of a drug study done at New York-Presbyterian Hospital in New York City of about eight patients on whom the drug was tested. I'm on the drug and have been for more than two years now, and it works.
First, make sure of the diagnosis. You'll scare yourself unnecessarily and waste a lot of time and energy if you jump to conclusions, especially about something so rare that the odds are you don't have it.
Second, doctors can misdiagnose. So whatever one tells you, have another (and preferably several) confirm it. I've had the opinions of several doctors contradicted by other specialists who really KNOW what they're talking about.
Third, there are several ways to treat this illness, and they all offer tremendous hope.
I know EXACTLY what you mean about knowing more than the doctors do about certain endocrine conditions. I encounter this frequently, especially when I talk with doctors who aren't endocrinologists.
I also know what it's like to worry about something that's out of your hands.
In any case, please remember that even people who have the identical illness often are affected differently by it. Some people have a tough time, others don't. Each person's case is different.
If you want the names of my doctors, I'll gladly give them to you. You can e-mail me at henro1962@yahoo.com for that.
One last bit of advice: BEWARE of medical Web sites. Speaking for myself, they scare the shit out of me (pardon my language) because they speak in terms of statistics and dire predictions -- and they also contain information that is very much out of date, especially when it comes to rare conditions.
The only reason I was searching through blogs was in an effort to try to find someone who was DIAGNOSED with what I have, because I believe the buddy system can help people get through difficult times, medical or otherwise.
I almost didn't post a comment to your blog because I wasn't sure if you'd appreciate a complete stranger offering his unsolicited perspective on things.
But then I thought that if it were me, I'd welcome advice from someone who wanted to remind me not to jump to conclusions. And so, here's that advice, for whatever it's worth.

Best,

Michael
New Jersey

Jo said...

Michael,

Thank you for your comment on my MEN2a blog. I greatly appreciate it and just wanted to reply. When I write on the blog I usually write things as they are happening. So if a doctor says might be parathyroid cancer then I post that it might be that. Then when we figure things out and a true diagnosis is made I post about that. The purpose of the blog is just a real life as it happens take on life with MEN2a, the cancers, and so on. I keep it mostly so my kids will have something but also kind of for the same reason you found the blog... so that others with MEN2a won't feel lost and alone like I did when I was first diagnosed.

Thank you also for letting me know that parathyroid cancer doesn't just mean chemo or rad therapy. That was information that no one had given me to this point and it's nice to know whether for myself or anyone I meet in the future that might have it. For that reason I will be saving your email and email address(when someone comments I get an email) so that if anyone else with parathyroid cancer ever contacts me I can show them that they DO have other choices.

As it stands right now we're not leaning towards parathyroid cancer with me. In fact, I'm now in the middle of another lab screw up and hoping to get that straightened out so we can figure out what IS going on. LOL. I am sorry you have parathyroid cancer. I wouldn't wish any of these cancers on anyone. Also know that since the first two diagnosis I received (medullary cancer and MEN2a) I really haven't worried much about what I may or may not have. So no scaring myself silly here unless you count homeschooling three kids. ;) I take it all in stride these days and try not to worry until something is actually diagnosed and I've learned everything about it. Ugh, I have an ulcer already as part of the MEN2a.... I don't want another. :)

Thank you again and please take care of yourself. I hope you find a "buddy" but if not you are more than welcome to comment or email me anytime.

Hugz,
Jo

Michael said...

Hello there,
Many thanks for your kind comments and for visiting my blog!
It's really heartening these days how much medicine can help people in difficult situations. Often, cancers like ours can be treated as chronic conditions that can be managed; a cancer diagnosis isn't what it used to be.
I also take great comfort in knowing that discoveries made during research on other illnesses can be applied to our conditions, too. That's how it was discovered that the medicine I'm taking, which was developed for patients with kidney disease, can also help those with parathyroid cancer.
By the way, as fate would have it (I won't call it luck), I have become friends over the past year with a man who also has parathyroid cancer. He and his wife and two kids live just 20 minutes from me -- and here I was thinking I was among the few people on the East Coast with this illness. Through my blog, I'm trying to widen that circle of friends. I think it beats a support group hands-down.
Have a great Thanksgiving, and I'm sure we'll keep in touch!