Scared and confused
 

Not even sure Im putting this in the right place, but Im having an awful day, and decided I needed some support and help.
I just got a letter from my neuro who I saw on Friday, and in the letter(not in the consult) he says that I probably have fibromyalgia (on top of myasthenia gravis)not sure what to think about this. I also got a phone call from my GP who wants to see me regarding some blood test results,(dont see him til Friday!!) so needless to say Im a bit stressed:eek: and would like nothing more than to have a good cry. Thanks I think I really needed to just put this out there, knowing people are probably going through something just as scary, frustrating helps. Hope your days are better.:hug:

Hi redtail,
So sorry you've had such a wretched day. I hope that the doctor has some answers for you on Friday. Only another day to go till then now. It sounds as if you have a lot on your plate right now. Feel free to vent away if you need. I hope tomorrow is a better day. Rest up and all the best for your Friday appointment. Let us know how you get on.

Here's a hug from the east coast. ;)

:hug:

Hi redtail

joining in Lara's hugs for you:hug: and hoping you will be able to rest up and not worry (easier said than done, I know:o )

do keep us posted
we are always here for you

Cheri

((((((((redtail)))))))

Gosh... I hate stress!!!!!!!!!!

Sorry you are having so much of it.

My doctor wrote in her notes that I had Fibro, but she never really told me that (that I remember).

I don't think I have it, but I do have some serious nerve problems.

Here's an uplifting story from England...

(it pretty much reflects my experience, too)

http://www.health-boundaries-bite.co...MPRESSIVE.html

(((((((((redtail)))))))))

thanx
 

Thank you all so much for your kind words :hug:
I have just got home from my GP appointment, he did the usual doctor thing, your looking well, and then ran thru the good points of my blood test, then got onto the one he called me in for the Ca-125, which tests for ovarian cancer!!!!(among other things), he said it was slightly elevated, :eek: and then went on to say what can cause that, endometriosis, and all manner of other things, by this time I was rather upset, but managed to say I had been diagnosed with endo some years ago, "oh that will be it"he said, "as its only raised a little that would account for it, if its cancer its in the thousands" (mine was just under 100) A HUGE sigh of relief, (not that I was worried or anything) and a big thankyou:Thanx: for listening and caring :hug:

Hi, Redtail...

I can definitely sympathize with what you were going through. Right now I'm waiting for the results of a CT scan I was given six weeks ago. They won't give me the results over the phone, and I'm in a position where I have to get caught up on all my medical bills before making another appointment.

I also had a PC call me once several months ago and tell me that she had to talk to me immediately. She wouldn't say what it was about on the phone. So I had to get a friend who lives twelve miles away to come and get me and carry me twenty-five miles to the doc's office. Then I waited in a small room for an hour and a half, and when the doc finally came in all she told me was that she wanted to send me to a new specialist instead of the one we had talked about on my last visit. I was so mad at her for putting me through all of that worry and dread!

I'm really glad that your results turned out to be mostly good, though. And I hope they'll get better still. Good luck, and the very best of wishes! :)

Idealist

Elevated CA-125
 

Hi Redtail:

I don't mean to scare you, but I asked for a CA-125 test and it
was elevated (NOT in the thousands). It turned out to be colon cancer.

I think mine was like 145 or so. From what I read, it could have been
anything from a hangnail to cancer. However, once the cancer was
removed and 8 months of chemo, my CA-125 is now under 10.

Please don't just blow it off. Don't wait til 50 to have a colonoscopy.

I pray that your diagnosis is a hangnail and not anything more serious,
but please get things checked.

Hugs,
Kat

Hey Kat
thanks for the heads up, my reading was only 75, so the doctor will repeat in a year. But now that Im aware Im going to be doubly sure I take note of my body, and any slight changes, as strangly enough, sometimes doctors can be wrong, and Id rather look like an idiot early on than have to deal with something more sinister at a later stage, THANKS!!!!

Your right idealest, the whole (almost) medical system seems to live in the clouds, I to have to manage my money, and even though doctors know your sick and have no money, still charge like wounded bulls, not all of them though, my neuro just charges me the medicare rebate, the government pays for my visit, I now pay nothing, but it took a few years and a letter from my Mum, to make him realise I had no money.

A year seems too long to wait to re-test CA-125
 

Hi Redtail:

When I originally asked my family doc to to do the CA-125, he
kind of smirked and asked why I wanted it and that it was not a
totally reliable predictor of problems. I said I just want it done.
At that point, he HAD to do it to cover his butt. When it came back
elevated, he sent me for a transvaginal ultrasound. There was some
procrastination on my part thrown in there, but the diagnosis
eventually was the colon cancer. That is why I am concerned hearing
of an elevated level--overly cautious?

http://ovariancancer.jhmi.edu/ca125qa.cfm

Johns Hopkins is pretty well-respected, so you might want
to check out the info on that site.

I know tests can be expensive (and I am the biggest sissy about
needles), but a year seems like a LONG time to wait to re-test. So
many problems are treatable if found early. Mine wasn't...

So, please just be aware, not freaked. Get a copy of all your labs
and find out what the "normal" range is for the test you had.

Hugs,
Kat

Hey Kat
thanks for your reply, I went to your suggested website yesterday. I to think a year is way to long, I will have a good long chat with my neuro nurse, who is very upfront about everything, and she will stand by me, and also be a good sounding board. Although Im not freaked out Im a little worried, which I think is a good thing. will keep you informed of any further developments.
thanx
redtail

Having just gone thru the ...
 

whole BC route last year, plus this year diagnosis of Hashi's and Osteoporoisis from 'penia' before...after getting CIDP a few years ago...well...... Face it?
Just ask them point out to do the WHOLE THING! and, if your insurance will clear it ask for a PET SCAN [if not these providers will either provide assistance or do it for free- I know as I was ASKED about this - during the whole 'process']
I can only say from my experience, that I truly wish they'd run the WHOLE alphabet/number panel on me as I've a family with a whole history of a variety of cancers...
Now when any doc says: you have X! I go, well why not one more? It's little comfort, but the important thing is- REALLY important is to get treatments as soon as possible! No delays, but, give yourself a day or three [especially if docs are pressing to DO IT NOW!] It's better to poll all your other docs about WHO should do what to YOU in the way of surgerys - I asked each of my existing docs at the time, 'IF IT WERE YOU, WHO WOULD YOU GO TO?' Give me three names...I'd found the surgeon, plastic surgeon and oncologist I chose on each of my other doctors lists...they each gave me 3-5 names...

Then I researched the heck out the docs! Checked with the local hospitals, webbed them up to see what papers they were afilliated with, and what their overall credentials were, as well as some of those patient-feedback websites. That you have such a sensible neuro nurse is good...BUT YOU have to have and learn all the basics to make your own decisions, clearly and without confusion..
Should you have any questions at all, I think I can help you find the non-neuro resources you may need. If not at my fingertips, I will find them..
As for being scared out of your mind and then some? Yep! I've been there, and well, I guess I'm OK as I think I'm typing sensible sentences?

:hug: :hug: - sounds like you need, no require a couple of these! - j