Wednesday, June 16, 2010

More Tests...

I had to go to the ob-gyn yesterday after spending the past few days with ovarian pain and GI issues. I've been putting off going for awhile mostly because its gotten difficult, if not impossible, to be able to get to the doctor on my own and the whole process is quite taxing on my body.

The ovarian pain has come and gone ever since getting sick. I had a hemorraghic cyst on the same ovary in 2007, another cyst back in 1998 so I'm no stranger to ovarian cysts.

I didn't tell the doctor until well into the exam that I had ME/CFS. She didn't say anything at first but then a  few minutes later did ask me if I'd thought about going on anti-depressants. Maybe the two weren't connected.

Regardless, she was very nice and appropriately concerned. She wasn't able to see my ovary on the in office ultrasound so she referred me for a full pelvic ultrasound to be done on Tuesday. And then I go back to see her on Thursday.

We talked a lot about my mom's history which was surprising. I hadn't had a doctor ask me so much about my mom's medical history before (for anyone who hasn't read my blog for very long my mom died of cancer 44 days after being diagnosed).

I didn't know this, and I think all woman should know this, but ovarian cancer has vague symptoms including gastro-intestinal symptoms (that's the part I didn't know), bloating, bladder problems, ovarian pain, weight loss, etc...I also didn't know that adenocarcinoma (which is the type of cancer my mom died of) can be ovarian cancer. And, that the risk for ovarian cancer increases if one has an immediate family member who has had breast, ovarian, or colon cancer.

I continue to have the ovarian pain as well as GI issues so I'm worried but I'm trying not to live there. I have also lost my appetite which is strange. The ob-gyn coudn't feel any mass on my ovary during the pelvic exam so hopefully there is nothing there and this is all ME/CFS stuff.

The ultrasound might be a tiny bit challenging because I have to drink 32 ounces of water 1 hour prior to the exam and I can't go to the bathroom until after the test. I told the woman over the phone that I wasn't sure if I'd be able to hold it but I'd try. Since getting sick I pee like a racehorse.

I also have to see a dermatologist about a spot that I'm sure is a skin cancer. Both my parents had significant skin cancers so I'm pretty familiar with it. I'm not worried about it though because it will be easily treatable. I had a pre-cancerous spot removed from my arm two years ago with no problems.

I think I've decided against stem cell treatment at this time. It turns out that only 30-40% of Cheney's patients showed improvement although 20% of those are functional cures. It's just not worth the risk for me at this point.

Instead I'm going to focus on getting my hormones into balance, going gluten free, and getting my mood to a good place even if that means going on an anti-depressant.

Since my ME/CFS doctor is moving I need to find a new doctor. I'm considering abandoning the idea of paying out of pocket for medical care for treatments that really don't help anyway. I'm thinking of seeing if I can find a good internist that accepts my insurance. Actually, that's not true I do think the Cheney protocol is helping me and Valcyte helped while I was on it. I think I'm just burned out having spent my entire life savings on out of pocket medical care.

I wonder what it would be like to stop chasing treatments. It might be kind of nice.

I did get into the Stanford study and will go there in September to have my blood drawn. They are testing people (both controls and ME/CFS people) to see what pathogens exist in people with this illness.  I think its a great idea. I'll also be tested for xmrv. Again. I think I'll probably get these test results more quickly than the previous xmrv test for a study I was in last fall (still haven't received those results).

I'm grateful to be in the Stanford study because I'll get tested for tons of pathogens and will get the results. If anyone wants contact information leave your email address in the comments section and I'll give them to you. People have to go to Stanford to get tested and you have to have been off anti-virals (or at least Valcyte) for 1 year.

That's it for now. Time for more Advil...


VeeVee said...

I just wanted to say good luck to everything. I know you must be anxious but I hope your your scan shows that everything is ok.
hugs to you x x x

Toni said...

Hi Terri,

I hope you get some definitive answers about the pain. Yes, those ultrasounds can be uncomfortable. I'm sorry you have to go through it.

I know what you mean about burning out on treatments. That happens to me (it did after a year on Valcyte). I take a break but then always start up on something else. It's hard not to keep trying things.

Just saying hello and hoping you're doing okay. What a surprise to see your text in blue. I like it!

Jo said...

Yes, I love the new look :-)

I've found anti Ds very helpful for my CFS. I'm on both an SSRI and the other kind (amitriptyline) and they enhance each other. I have better sleep, less pain and less anxiety. If I do get depressed, which I do, we put the dose up until I've sorted out the issue. Generally though, i'm on a very low dose.

Just a suggestion - you could give yourself a spell of not chasing treatments and see how it feels. Maybe try rest and pacing for a while and see what your body's own healing power tells you. Then, if it's not working for you, start researching again.

I hope this scan shows everything is AOK for you. All the best (())

Renee said...

Hope that all the tests go well and you have some relief...from worry and from your symptoms. Sometimes it is best to take a break..I have done that recoup and gear myself up for the next challenge...or idea...or treatment....or die off..
You are in my thoughts and prayers.

Nina said...

I just found your blog and read it with interest. I am considering stem cell treatment (have you considered ISCI in mexico that uses embryonic stem cells?) It's hard to know what works best! Also, I did't know Stanford was doing a new study. Are they still taking new people? I was formerly a Montoya patient.
Btw, I also find amytriptiline (elavil) in low dose at night indespenible.

Wishing you well,

Pris said...

Good luck to you. I chased treatments for many years and spent a lot of money, Now, if something makes a LOT of sense I try it. I just made a notebook and am going to get serous about the pacing protocol.


Janis said...

Hope you get useful info through Stanford testing. Going gluten free helps everyone so much. Also consider going casein free too(or test for casein antibodies to see if you are sensitive at Your immune system will improve if you are 100% compliant and you won't suffer from so many symptoms.

JamesD said...

I agree with Janis. I went Gluten/Casien/Sugar free. That helped a lot.

I also do both LDN and Methylation protocol. Between those and the dietary changes I am feeling significantly better. Not cured, still sick, but more like a human being. I can actually hang out with my friends sometimes!

Also I tried the antidepressant thing, none of them worked for me and most of them made me sicker. One sent me to the hospital. I hope you can do without, they dont work well for most people and the side effects really stink.

I hope your scans turn out ok! *hugs*

Fibromyalgia Patient said...

What did you find out after all?