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Holly
08-23-2005, 04:58 PM
I really shouldnt call my mother...
Some back history..

My mom has Sarcidosis. It is an autoimune disease that make the body's immune system attack an organ and kill it like an invading cold germ. My mother struggled with this through out my childhood. I lived with the idea my mother could die any day now, b/c at that time sarcoids was a rare disease and there was no real treatments for it. For my mom her sarcoids attacked her lungs and musclar system. I speny my nights as a child hearing her racking cough all night and praying that she would live. Yeah i know.. i sound pathetic.

Now i have been diagnosed with PCOS. I cant do the regular method of relieve symtoms though birth control pills b/c i am intolerant to the synethic hormones. I take glucophage.. which is actually helping.

My grandmother had/has some form of gluten allergies, and a cousin on thr other side of the family has full blown cilliac(spellig?).

My mother has been harrassing me with phone calls about how all auto immune diseases are linked, and that my disease is really masquarding as Hashimoto's thyroid disease.
I have been trying to take it all with a shaker full of salt.
Today, She starts rattling off symtoms that she says i have that i didnt know/think i had. (HELLO when have i even been aenemic?)Now, i am freaking out about it on the inside, and trying not to get upset on the outside. I tell my mother, "what do you want me to do about this" and "should i call my Dr.?" and i get passive answers. When i stand up to her about the fact taht i dont have eyebrows that are falling out and brittle hair/ anemia she attacks me and gets all defensive about this.( Now some of these symtoms to mathc up with these other disease and this diagnosis makes sense.) She leaves me with the idea that maybe i have sarcoids and it is attacking my thyroid. (EEEEEEEEEEEEEEEEEEEEEKKKKKKKK!) and i prolly shouldnt call my dr b/c i might offend her... ( i dont see this dr until January). Now i have had my thyroid tested and it come out normal, however, with the thyroiditis you can only detect it when you are looking for the antigens and the .. something eles... basically another set of tests that i am pretty sure werent done on me.

http://www.ovarian-cysts-pcos.com/news14-pcos-thyroid.html#sec1

So here i sit with my head spinning about classes and now i get to add another trauma to my poor lil woe-begotten brain.

I am scared that i am getting the wrong treatment,
I am scared i have the wrong diagnosis
i am scared to talk to the dr about it now
i am scared that i might have my mother's disease
i am scared that i might TURN INTO MY MOTHER


do you ladies have any information on this connection?? or anthing else?

KissMeKate
08-23-2005, 05:28 PM
Youch!

IMHO, stress can make anything worse and cause all kinds of trouble on its own. So, number one is to get your stress level down, no matter what.

Number two, bother your doctor if you need more information, or get a second or even third opinion. Doctors are not infalible people and often get stuck in ruts and don't look for other options for causes of symptoms.

Diseases that can have genetic pathways are scary things. Now that both my sister and my cousin (on my mother's side) have been diagnosed with both fibromyalgia and/or MS, I have been struggling with deciding if I should go get an MRI to see if I also have MS (I've already been diagnosed with fibromyalgia, but I also have bizarre symptoms in the heat). You need to find a supportive group (like the wenches) rather than one tends to aggravate the situation.

Find a good doctor that you can establish a good rapport with (not an easy task either) and spend as much time as necessary discussing your symptoms, perceptions, and needs. Once you feel that your situation is on the path to control and recovery, do your utmost to get your stress level down.

Feel better soon! :grouphug:

Holly
08-23-2005, 05:38 PM
Thanks... I guess you know how i feel huh???
well maybe not the whole mother part but the part about the wondering ..
thanks:)

Ysobelle
08-23-2005, 05:45 PM
I'm getting tested for PCOS in the next week or so-- I go back to the doctor Sept. 12th. But one way or the other, it's not the worst thing in the world, and it's entirely treatable, as you know. I'm sure your mother has your best interests at heart-- she just loves you!-- but she has to understand that you're a big girl, and you'll talk to your doctor, and her piling the stress on and projecting her own symptoms onto your body is NOT helping.

Good luck with that.

I'Cin
08-23-2005, 06:27 PM
Everyone in my family has some anti-immune system problems, but not diagnosed as anything specific. I also have hashimoto's and it is also (they think) genetic. I know my mother and sister both have it. I haven't been on the synthroid for a long time, b/c I can't seem to find a doctor (including the endocrinologist I went to) who knows what test to run.

Why not call your doctor about it? You don't have to do it at panic level, but just say, look, I'm a little concerned that I'm not sure we actually discussed some things. I need to discuss this with someone who (a) is supposed to know about it and (b) won't panic me over it. Since you're my doctor, I think its the best idea. then if you're mother insists, tell her you've talked to/are going to talk to your doctor and she should relax and let you worry about your health and just take care of herself since you love her and would hate to lose her, especially if you thought that worrying about you made her health worse.

Good luck and feel better.

I'Cin

BuxomBrigid
08-23-2005, 08:07 PM
You can always ask your Dr. questions about your concerns, but I would ultimatley find a Dr. you trust and go with his course of diagnosis and treatment. I don't know if you are seeing an OB/GYN or a RE, but many REs are better at treating and diagnosising.

I have PCOS (about 2 years now diagnoses)....it can be scary, but there are much worse out there. There are a lot of good books out there on the subject and rather than BCP there are other answers including diet modification. If you want more info/support just drop me a PM.

(((HUGS)))
Hootie

Nimue
08-23-2005, 10:35 PM
See a doctor!! :!:

If you have valid questions about your health, and it seems you do, you owe it to yourself. Forget about whom you might offend.

As far as thyroid issues go, here is my personal experience. I have been hypothyroid since I was about 18. I have been on synthroid since then, in ever-increasing doses until I maxed out at 1.75 mg. Now I take Cytomel as well, because the Synthroid doesn't work well enough alone. Nobody has ever explained why my thyroid has ceased to function...but the way they determined this was by my T3 T4 and TSH blood tests. TSH is Thyroid Stimulating Hormone, and a high TSH level means your thyroid isn't working hard enough. Your doctor will probably want to run these tests, as well as others, I am sure.

I can't stress enough that you need at least one solid medical opinion on this.

Hope you feel BETTER SOON! :grouphug:

Mairi the Herbwench
08-24-2005, 11:31 AM
Holly - do you live anywhere near a large teaching hospital? If so, I recommend seeing a geneticist - they have the knowledge and background for looking at lineage and testing for different genetic diseases. (They also provide counsleing if you're thinking about having children.) Also - if you're having a difficult time achieving rapport with a doctor, see if you can't find a nurse practitioner - they have more time with patients and generally (IMHO) listen better than doctors. If that's not an option, try for a younger female doctor - generally up on the latest and again, tend to listen a bit more.

Best of luck - it sounds like a rough road...

Holly
08-24-2005, 11:56 AM
i am not near a place to get genetic testing done.

Although i might look into it..


Thanks for your ideas and support ladies, it is helping....