Sorry MM3,
I can barely put two thoughts together today, I feel like my brain is in a fog, so please forgive me if I'm didn't make sense when I wrote earlier. Jazzy

Krys:

I am so terribly sorry for all that you have endured due to the ignorance and fears of your physicians. I will be praying for you that your "miracle" will arrive. Thank you for sharing your story with me. It is good to know that while I want no one else to suffer, that I am not alone. I wish I could comment on your blood level results, but I'm afraid I can't help you with that. However, what I did notice was that you described each test result as "low". If all of your levels were low...doesn't that suggest that this may cause your fatigue? I am certainly curious to find out.

Jazzy:

Thank you for your kind words of support. I'm glad I'm not the only one who sees a problem with not only the theory but the treatment as well. I'm sorry that you are having a HA. Hope I didn't get you too worked up. (Sorry). As always, I'm happy to share this journey with you...albeit I hope the journey gets easier for us all.

- MM3

Aw, MM3. You put it so well. All of the anger and frustration... All the pistivity so eloquently summed up. Thank you.

It wasn't until I joined this little band of rabble-rousers, that I realized that I've probably had this going on in my head for quite some time. I've been a bundle of odd symptoms with no causes for over 6 years, and have been dismissed. Nothing has been life altering, so I dismissed them as well, and forgot about it. I got laughed at by my gyn for thinking I was perimenapausal. My primary care doc said, "If half of your face starts tingling when you look to the left... stop looking left" (seriously?). Blood sugar's fine, don't know why you're dizzy. "Age card" for weight gain. My thyroid's not fat, it's fluffy.

I completely get the anger. But I have been lucky, too. My diagnosis started from a thorough eye exam to get new glasses. She explained PTC although she couldn't offically diagnose PTC vs. actual tumor... she just saw the papilledima. The retina dr confirmed everything and scheduled the MRI as well as the neuro appt. She explained PTC too and called the neuro to make sure I didn't "fall through the cracks." The neuro looked at the MRI, told me I would need a spinal tap and was surprised that two other health care providers before him had already told me all about it. Neuro doc is not much for words, but he's moved right along what I would expect based on what I researched and heard from all of you. So... take heart, there is some knowledge get out to those doctors.

More than angry, I'm scared. I'm afraid I won't be able to get a handle on this. I became a supervisor at work shortly before I got those glasses I mentioned and the HA's began to happen with more frequency. I struggle to learn the job, keep up with the paperwork, and tons of reading. I feel like I'm just not doing a good job, so I have to settle for a good enough job. I have to work for as long as I can because: I need to have someplace to go everyday or I'm not OK, and I carry the insurance. I HAVE to figure out a way to make this work.

So, I do the best I can each day and let go of the rest. And live in fear of the day when that is not good enough.

Well Jazzy: I'll see my neuro next week. Although I'm a patient of hypotyroidism these past blood tests showed for the first time in the past 2 years that I'm finally in the right dose, and that also have reflected in a better night rest. When I was overdosed I used to suffer from imsomnia. So the mistery goes on or it's just the Diamox. The only rare thing I'd that I tolerated very well with no energy problems the Diamox although I was in a higher dose (1,000 mg a day). Well let's see what my neuro has to say...

MM3..I forgot to tell you that I had a congenital birth defect re: my ureters to my kidneys and only by accident when i was 17 an intern in the ER felt a lump on my ovary and admitted me into the hospital...and that's when they found out about my kidneys, but by then scar tissue had all ready started to damage my kidney's and they slowly down in function...when I was a child I was always so sick and no Dr. ever caught on what was going on with me or even tested my urine which would have been a clue, and I wouldn't have had to have a kidney transplant...it seems like we all have something that wasn't caught in time.
and don't worry you didn't get me worked up at all, it helps that we all can share what is going on with us.

Krystell,

Oh my, sorry you also have hypothyroidism.. my nephew has it and is so tired that he sleep 10 hours at night, and if he tries to do something big, like wash his car, he is so wiped out he can't move the rest of the day. And I'm also sorry you went through so much with getting your endometriosis dx. By the time I wanted to have children my kidney disease made it too dangerous (for the child) but I came to the realization that you don't need to go through labor to love a child. And while I don't have any children, I am an Auntie to many.

I am concerned since your electrolytes are low....As an OT I usually just look at someones hemoglobin/hematocrit to see if they are able to complete therapy, I don't know much about the other tests (just for myself since I get monthly blood work done). And while my hubby is a RN he only works in the O.R. so i would def. check with your Dr....sorry I and my husband couldn't be more help re: the blood tests and I hope your appointment goes well. Blessings, Jazzy

Bax,

You mentioned that you thought you were perimenapausal?
When you said that, it just reminded me of my mom because for the last 8 years or so she's been going through something like that but never got it pegged down as to why she was feeling the ways she was.
She has a history of headaches, but I've never asked her much of what else she might experience symtom-wise. I just wonder if maybe she could have PTC. They're trying to determine if there might be a genetic link anyways. Maybe I should ask her.
But really I just wondered if you thought the problems you were having were related to the PTC?

Don't laugh at me MM3. I stopped Diamox and the jeans I went to the hospital in are a little bit snug right now...Ugh!!!!!!!!!!

Hey guys
loong time no write, but i just wanted to tell you NO STERIODS. they help a little but hurt more than any thing else. I was 110lbs when first dx'ed with PTC but with a combo of other meds over a year I am 170 lb and still having to wean off because of how long I have been on them. If it can be avoided opt for no steriods!

Never,

Yep... Insomnia, hot flashes, night sweats, irregular/missing periods, unexplained weight gain, CSR... MM3 described it too. It started when I was about 27ish, but my mom began perimenapause when she was 34 so I asked my GYN about it. She giggled, asked me why I thought I was going through The Change, and did a blood test. Test came back normal, but never bothered to address the symptoms that lead me to the test to begin with. With so many of us having similar issues, seems more than a coincidence, huh? So it's been like this for years and I just began getting headaches 8 months ago. Ask your mom about her experiences.

My hormone levels have always been off, but never far enough for my doc to concider Perimenopause, especially since those problems started as a teen (I had an ovarian cyst at 13) and the PTC symptoms actually started about 6-8 months later, I actually have LONG periods or No periods, nothing in between til this last bout Every 2 weeks?
So, its definitely related somehow. I am getting ready to email a doc that does research on PTC in Southern Ohio as I am getting desparate and a friend referred him, He looks at the connections between PTC and others and works with her regular docs, so I amgoing to try that.

Charlotte

Very, very interesting girls. Thanks Bax for your input. As always, you make me laugh with the way you phrase things. You sound so much like me. My GYN laughed at me as well when I questioned menopause/perimenopause. Furthermore, when I told my ENT about the "whooshing" in my ear....they gave me a hearing test and then she said, "Well, everything has to start sometime". WHAT THE HELL DOES THAT MEAN???

Krystell: I have read that hypothyroid has been linked to PTC. May be worth checking out.

Charlotte: Ovarian Cyst at 13? I have had many ovarian cysts...one at age 21 which grew to the size of a cantaloupe. However, I was never diagnosed with Polycystic Ovarian Syndrome and I haven't had a problematic one in quite some time. I have, however, read that this syndrome has also been linked to PTC.


Duchess:

Thanks for the help. I am with you! JUST SAY NO! I have gained a total of 12 pounds with these last two rounds of steroids and now that I have stopped them...well, the weight is just not coming off. I feel disgusting! I am very round these days. And, oddly enough that pesky rash is back. It doesn't itch...but it sure is ugly.

TJ:

I'm not laughing at you...but, awesome way to convince me to stick to the Diamox!!! I'm willing to bet that it's a combo of the stopping the Diamox, and the IV fluids, and of course that AWESOME California hospital food!!! Plus, you've pretty much been in bed all week. You'll be alright. Just don't let them put you on steroids. JUST SAY NO!!!

P.S. I still have insomnia. I take Unisom every night to go to sleep...and I take Colace every morning to go the bathroom every afternoon. TMI??? LOL! (Honestly, just mentioned that as many medications can clog up the pipes and for those of you who are unaware...migraines affect the intestines/stomach, often times shutting down the system. I would assume many of you share this problem...or possibly I wrongfully outted myself and if so then I'm so embarassed. :)

- Honestly yours...MM3

I started perimenopause when I was 38 and I couldn't get a Dr. to believe me (my mom went through menopause when she was 40 and in only 2 weeks...she's very efficient that way)

Finally I found a gyno guy who agreed my symptoms and then he put his finger up my bum....well, I thought to myself, if he can feel my ovary back there then it should be in the guiness book of world records..obviously I didn't go back to see him!
Anyway I gained 30 pounds over a year but lost most of it before my kidney transplant. I used progesterone cream to help the hot flashes and mood swings and stopped when my neuro opth said it be causing the PTC?
I also only have one ovary since one was removed from a begign tumor when I was 17.

Even though i am post menopausal after my last surgery I am having more hot flashes (or as I call them "lightening bolts of searing heat occuring in a millisecond that causes me to sweat in places I didn't know existed.)

Jazzy