Again, sorry I don't update much. I probably should since there are so many Google searches that bring people to this blog. Of course, they realize quickly that it's not a medical page and exit sooooooooo...lol. I'm afraid after the initial overdose of MEN2a info when you are first diagnosed, there isn't a whole lot to talk about after that. It's a genetic disorder, you're stuck with it, watch out for growing tumors. About sums it up!
Anyway, I spent most of December and all of January too sick to do much of anything. In the middle of December we moved into our very first house. Ever seen the movie " The Money Pit "? Yeah, we live in it! So stupidity took over both mine and Vin's common sense and I ended up in alot of pain from moving and cleaning. Well that wiped me out for two weeks. THEN we went to one of our playgroups and Lil Man came home with a stomach virus that worked it's way through everyone in the family. Lil Man had it the worst, Big B got hit hard for about 24hours, Sis just had some vomiting, and Vin had about the same as her.
Me on the other hand- a train wreck as always. ;) I ended up sick for three weeks which not only covered the stomach bug but also me going into adrenal crisis twice, three fibro flare ups, and my version of a nervous breakdown. It was great lemme tell ya! The breaking down part came at the end of the third week so it took me another two weeks to get over that, a week of migraines, one more journey into adrenal crisis, and FINALLY it was all over. WHEWWW.
I'll just go by disorder/syndrome and catch you up that way-
Fibromyalgia~ Still got it. Cymbalta- don't work, Flexeril- don't work, Vicodin- don't work, and Percocet- you guessed it... don't work. I'm currently on nothing for the fibro pain and living each day in kind of a mini hell. I'm sure it's not the medications' faults either. I'm one of those oddballs that builds a tolerance to anything and everything I take within a month or so. This of course means that I can't get pain relief or much of anything like a normal person. More often than not I'm just left to hurt because there isn't much help. :(
MEN2a~ Yep, still have it. Imagine that! The kids do too. Amazing! LOL.
Medullary Cancer- Had a new calcitonin test taken last month and the results were of course that my levels are rising even more. I finally realized that even though they were rising on the last test I think I still held hope that maybe it was just a fluke and this time we would see them either stay the same or be lower. Not so lucky I guess but at least I'm not shocked by knowing the cancer is regrouping.
New tumors/lumps are forming in some lymph nodes in my neck (easily palpitated) and as quickly as those have come I'm going to say that they did a lousy job at Moffitt of removing lymph nodes. No way you could have missed these you guys. They are right there for all to see! *shaking head* I won't be getting surgery again at this time. I'm not going to let someone make me look even more hideous by adding more scars to my neck right now. There is no stopping this at this point so I might as well wait until we have more in my neck and THEN let them hack me open.
I have a full body CT scan in and chest xray about a week. We will be checking everything at that time. We're going to find out once and for all if there is a tumor in my small bowel, see how much is in my neck, see if there are any new hemangiomas or fibrosis in my liver, and see if this cancer has moved to the lymph nodes in my chest yet because I've had a cough that won't go away for about four months now. The chest xray is also to look for masses and make sure nothing is going on to cause my chest pain and numbness in my right arm. So all will soon be revealed... don't touch that dial! lol.
All my other bloodwork came out fine which was nice. My TSH levels are good on Synthroid 125mg, my intact PTH was around 99 I think which is good for me, my calcium levels are good, and I think the only things that were a little low were B12 and magnesium but they were at the edge of normal so I'll work on making them better but no reason for us to worry. I still don't have diabetes which is great.
The kids are both doing well. It's about time for them to get to "pee in a jug" again (24hour urine analysis for pheochromocytomas). lol. Big B doesn't mind so much because he has the equipment to be able to pee in the dang thing but poor Sis gets the female side of it which is a pain in the ass! Come to think of it, I guess it's about that time for ME again as well. OY!
Please keep the kids in your thoughts over the next two months if you don't mind. I honestly couldn't handle one of them having adrenal cancer right now and if I can't deal with it then I'm not going to be much help to them with dealing with it. I so hope they never end up getting it. Having no adrenal glands honestly sucks the life out of you. I have a feeling I'll die from that crap before I'll die from the cancer. *sigh*
So I am currently on are Wellbutrin 300mg daily (told ya I finally cracked! *wink* Just too much and it finally got to me so mama went for the drugs! lol), Cortef 10mg daily, Florinef .025mg (or is it mcg?) daily, Synthroid 125mg daily, and I now take an aspirin everyday until the xray results come back. Dr M is thinking maybe all the stress is causing anxiety and it's manifesting as chest pain and limb numbness. I hope he's right because I would much rather have that! lol
Had a follow up with Dr M on Wednesday. Went over test results and started working on getting the CT scan and chest xray set up. He also gave me a scrip for AmbienCR to help me sleep but the insurance company is being such a butt about it that I just bought some TylenolPM and said screw it. Something is better than nothing. Obviously prescription sleep aids don't help me any. Can I just say that Lunesta sucks? Really, it does. Not only did it not help me sleep (at neither 2mg or 3mg) but it also leaves you with this horrid taste in your mouth like you slept with a mouth full of unwashed change! Ewwwww. About all I got out of the whole sleep aid thing was some pretty tripped out dreams (and here I thought I'd never see my ex-husband again! LOL) and that foul taste. Oh and the sleep aids were to try to help me actually sleep at night because I've had nothing but broken sleep for the last 17 years which makes my fibro even worse. :( At least now we can say we tried right?
Thanks for reading as always and if you can think of anything interesting for me to post about having to do with MEN2a, medullary cancer, pheochromocytomas, or something else related then drop me a line. I'd be happy to post it.
Several of you sound like you have Lyme symptoms. Find a Lyme-literate doctor and get tested. Your regular doc most likely will deny it because most docs know NOTHING about Lyme. If you have symptoms in several body systems, Lyme is worth finding out about. It's why most meds don't touch lots of the symptoms and pain you have. Gotta get to the cause.