Monday, March 30, 2009

Dr. Friedman...

I'm heading to L.A. on Wednesday morning to see Dr. Friedman- the periodic Cushing's specialist. Everyday I change my mind about my own diagnosis. Depending on the moment, I'm sure that I have Cushing's, or that my endometriosis is the cause of all of this, or that I in fact have Celiac Disease causing the drama, or that I'm actually fine and just need to get used to my new "body". Each moment changes the outlook. I just got back from the gym- a 90 minute intense workout with Ben where we both kicked eachother's asses, and it's hard to believe that I've been so sick. But then I stop and realize how sad it is that I can't lift my own body weight, or how that stabbing pain after my workout under my rib cage radiating up to my right shoulder probably isn't all that normal. And then I think about how I felt three weeks ago, and how this always happens. This period right now, the this-is-not-so-bad-I-can-deal-with-this period, is what makes me stop seeing doctors again and go back to just dealing with what I've got going on. And then, sure enough, a few months later I'm back in the doc's office worse than ever....trying to figure out what's wrong with me. This is the first time that I've actually realized that it might all be related- that it might be one big long problem that just cycles in and out. I'm in a good phase, and I want to forget about the bad phases...but maybe I shouldn't just yet.

I went to see a GI doctor today for the first time, ever. With all of my endometriosis problems, all of the GI symptoms, all of the pain- I've never seen anyone about that piece in particular. Dr. Harris at the Mayo Clinic was really great. She sat with me for an hour going over my whole history, detail by detail. She was very thorough, and it really helped me put everything together. Basically, she thinks that a lot of what I've got going on is caused by the endometriosis. She thinks I have endometriosis implants in my bowel, but she wants to do a colonscopy to make sure there's nothing else that could be a problem. She also is really concerned about celiac disease, which I was surprised about. Because I've been fairly gluten-free for months now, she can't test for it. And she feels that my previous test, after having been gluten-free for over a month, was probably incorrect. I already know that I feel better (not 100%, but better) when I avoid gluten, so I just want to stick with that. But she said if I do actually have celiac disease, it can be really bad to not diagnose it and just keep eating a little gluten here and there because of the damage it can eventually cause. She is having me start eating gluten again- the equivalent of 4 slices of bread EVERY day for 6 weeks, and then I'll have some blood work done to determine if I have the first markings of celiac disease. If the blood work comes back positive, they'll move on to the upper GI scope/biopsy, and they'll do that while they go in for the colonoscopy. Sounds like a good day, eh?

But right now I'm focusing on my trip to L.A. to see Dr. Friedman. I know it says to take pictures to show body changes, etc. But I don't have a whole lot of change other than the 25ish pounds I've gained in the last 4 months out of nowhere. I guess I could take pics from 6 months ago to compare to now, but my symptoms and everything started long before 6 months ago. The weight however wasn't much of a problem back then. That's a recent change. I got all of my medical records from the Mayo Clinic today, so I'll be taking those. And then I'm taking my MRI scan, but they'll have to do repeats in L.A. because my previous MRI was done on a 1.5 Tesla machine, which isn't as strong as they'd like. But if my tumor showed up clear as day on a 1.5, what will it look like on a 3T? And why would they need something stronger if they already can see it? Oh well, I guess a better image can't hurt.

Anyone out there who's seen Dr. F have any tips or anything for my trip? I'm a little nervous about what he's gonna say or how I'm going to explain everything to him. I have no idea what's connected, what could be Cushing's, what to tell him, etc. I have my folder of all of my medical records, and I'm writing down all of my symptoms- but I don't have any grasp on my "cycles" because I haven't done much testing at all yet. I just know of some symptoms that correspond to each other, but not whether they correspond to high cortisol or low cortisol.

Help me out if you can! I appreciate it! :)

7 comments:

judycolby said...

Good luck with your appointment. I hope it goes good. I'll list some symptoms and hope I remember most of them. Some of these are ones that don't seem to be listed in textbooks.
Acne, canker sore, exessive sweating, trouble sleeping or reversed sleeping pattern, weight gain, moon face, gall bladder troubles, low vit. D, changes in hair (thick to thin, thin to thick, curly to straight or straight to curly) excess hair growth on women (arms, legs, face), GI problems, muscle aches, or just aches in general, memory loss, confusion, trouble concentrating, acid reflux, some people have odd body oders sometimes but it's not BO, odd dark patches of skin quite often on the knuckles and neck (or at least that's where my kids are), insulin resistance, low growth hormone.
Seems like a long list, huh? And I'm sure there's some I've missed! Oh right, the buffalo hump (!) how could I forget that, although sometimes it's not as much a hump but looks like VERY slumped shoulders. And social isolation. But remember that not everyone has all of these. And sometimes as the disease progresses more symptoms appear.
I'll let you know if I think of more. Will you have a laptop with you?

My Endo Journey said...

I hope it goes well!! Keep us updated! And, it sounds like the GI was great help. I love when Dr.'s actually sit down and TALK with you!!! Having those scopes done at the same time is ideal! I had mine done differently.

I hope adding the gluten back in doesn't throw you too much for a loop. But, I'm glad they are looking into things :)

I understand the first part of your post...feeling better, forgetting the bad...then feeling bad, wishing for the good. So frustrating!

Amanda said...

Thanks for your message :o) I am thinking of you SO much right now - I mean I think of you lots anyway but particularly now you're about to go and see Dr. F. I really hope you get somewhere closer to a diagnosis with him. The GI doc sounded good - the thought of going back on that much Gluten sounds terrifying, but at the same time fro what I've read you would be worse off leaving it undiagnosed because gluten is in so many things in trace amounts at least if it's diagnosed you will get more help to make sure you look after your health (do you get help wit buying GF foods over there? Over here celiacs get their food on precription which makes it uch cheaper - it's when you're undiagnosed or just decide to cut out wheat like I did that you have to pay full amounts for it).

deedee-7766 said...

some endo info, cushing's does not cause endo (if you want to see some info about hormones and thyrouid, see mary shomon's website and book)

centerforendo.com

endometriosissurgeon.com

endoexcision.com

pelvicpain.com

naprotechnology.com

erc.activboard.com/

endometriosis.org

endo-resolved.com

johnleemd.com

endo101.com

fertilitycare.org

deedee-7766 said...

The CEC does record reviews for free....they're excellent as is dr redwine in oregon...the two sites have great articles....

those are the best docs for excision surgery, the best kind i should say...if you go to the wrong docs for endo, i hate to say this but you're wasting your time...they don't know a lot about endo, although they think they might / do...

this is a doctor that's supposed to be great, in phoenix...his name is mentioned on the erc site...

http://www.stjosephs-phx.org/Academic_Affairs/Medical_Students_And_Rotators/186317

i think the cec is the best though, and it's easier to get there than you might think!

(if you have issues with chronic fatigue, which can be part of endo, then check out endfatigue.com)

KW said...

I wish you the best of luck with your appointment and hope you're able to get some definitive answers.

As for symptoms of Cushing's - I agree with everything Judy mentioned and I'll add a couple more:
* reddish-purplish stretch marks (primarily on the stomach, but also on other places on the body like under arms, inner thighs & breasts)
* muscle weakness, particularly in the upper legs
* weight gain primarily in the upper body (face, neck, stomach)
* unexplained skin rashes or skin hyper-sensitivity
* red or flushed face, red cheeks
* rapid heart rate or heart palpitations
* slight to moderate tremors in the arms and hands

I know it's a lot to take in, but I hope this helps.

I recently started a group that you might be interested in. It's call the Cushing's Partner Program, a place where patients can partner up with survivors of Cushing's to gain an inside perspective on the recovery journey from Cushing's. To learn more or to join our group, please follow this link: http://www.meetup.com/The-Cushings-Partner-Program-Support-Group/.

Keep up the blogging and I hope to see you in our group!

Take care,
Kristin
www.mybattlewithcushings.com

Hua said...

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