Test Results - Beyond Frustrated and Lost

I am experiencing such a full spectrum of emotions right now that I don't know what to do.  I'm angry, confused, hurt, lost, scared and beyond all frustrated.  I am now 5 and a half months into being a medical mystery and being unwell.  All of my test results that I had last week to try to determine the cause of my hair loss, continued burning mouth, hoarse voice, hives and feeling unwell have come back normal.  AGAIN!  For all the normal test results I've had I should be the world's healthiest person and yet all my Drs. tell me how unwell I am and that I can't even consider getting pregnant until they find out what's wrong with me.  I just want to feel better and to stop getting new symptoms every month.  I am convinced my body is telling me something but I certainly don't know what it is and neither do the Drs.

Even though my Dr. didn't see any reason for hairloss upon my exam and was banking on it being a low ferritin level, it is not that.  All the vitamins tested for malnutrition/burning mouth are normal.  No signs of thyroid disease (don't have the exact numbers, they are sending them in the mail) and no Lyme disease.  I never thought I had Lyme and couldn't figure out why my Dr. decided to throw that one in.  The nurse is going to send me all of my test results from the last few months so if I go to a new Dr. they can see historically the results.

There are no signs of autoimmune disease, the last time I had a CBC the only things that came back abnormal was slighthly high cholesterol (which was new) and very low Vitamin D (had gotten lower), all my organs seem to be functioning fine besides my heart which is deciding to be very slow in the last few months but the cardiologist cleared as a healthy heart...  I am out of ideas and don't even know where to focus my energy now.  I have been doing tons of research to try to tie all the pieces together. 

I have my skin testing appointment with the allergist on Friday to rule out the last suspected allergies and then I'm sure she's going to wash her hands of me too.  I am waiting to hear back from the GI's office to get an appointment and see what he has to say.  I probably have a few pretty uncomfortable tests ahead of me.  I wasn't able to get an appointment with the hair loss specialist until April, I will probably be bald by then if the hair loss keeps up at the rate it is falling out now.

I am just so down right now.  I know I have a long fight ahead of me and I've been trying to gear up for it, but I feel like I just need to let out a giant scream and break some things first 

My internist is out the door for materinity leave in 2 weeks and didn't even call me with my results and next steps.  I'm very much angered and hurt by her.  Because of our 4 year history and good relationship I can't help but feel like it's a slap in the face that she doesn't care what happens or where I go from here.  I know I either have to wait until mid next month to see her associate for a second opinion or find someone else for that.  I haven't needed to find a new Dr. in so long and I am overwhelmed by the process.  I'm in Chicago and have so many wonderful Drs. and teaching hospitals at my fingertips but I am just so confused on how to find one to proceed.  I'll try to see if the allergist has any recommendations on Friday.  I'm just very lost and don't know where to turn next.  I don't think a rheumotologist is the answer because all my bloodwork from their area is normal and I already have Fibro.  Perhaps it's an Endochronologist?  I first need a really good internist to play quarterback.

Any recommendations, advice or words of encouragement would be helpful.  In my last post you all convinced me that my body was definitely telling me something and I had to keep pushing ahead.  I know I do, but I'm just so overwhelmed now.  I was really hoping that the answer was in the last round of bloodwork.  Ugh! 

Thanks Robin! I'm pretty sure only my ANA has been tested. I'll know for sure when I get all my test results sent to me though. But it's definitely something to consider, perhaps paying a reuhmy a visit isn't such a bad idea. I've only been to one once for a 20 minute visit to confirm the Fibro.

Thanks for your advice and kind words. I know you definitely can relate to the frustration. I used to think medicine was such an exact science, boy did I learn my lesson!

Hi Frankey - I copied the following from another forum. Hope it helps:

This is what I read about the vitamin b2 deficiency:
The conversion of riboflavin into FAD and FMN is impaired by hypothyroidism and adrenal insufficiency. People who are very active physically (athletes, laborers) may have a slightly increased riboflavin requirement.
SIGNS OF DEFICIENCY
Riboflavin deficiency’s include baldness, burning of the eyes, cataracts1,2, cracks and sores in the corners of the mouth, depression., dermatitis, digestive disturbances, dilation of pupils, dizziness, dropsy, eye fatigue, feeling of grit or sand on the inside of the eyelids, hair loss, impaired lactation, inability to urinate, inflammation of the tongue and lips, insomnia, lack of stamina and vigor, lesions of the lips, oily skin, red sore tongue, scaling around the nose, mouth, forehead, and ears, sensitivity to light, sluggishness, tension, trembling, vaginal itching, weight loss.
So I guess you can have both a vitamin deficiency and hypothyroid.
Maybe have your doctor check you for vitamin b"s deficiency.
Read more at http://www.healthboards.com/boards/showthread.php?t=291218&ktrack=kcplink

So sorry you are suffering so much. I have had many tests myself and it is all very frustrating. I do have some problems with my GI tract, gastroparesis,heital hernia,gastritis,gerd and IBS. I was told a few years ago I had dysautonomia by my cardiologist. So some tests di give me an explanation as to why I was feeling so bad but I am still in the dark about other things.

Just do the best you can. Having a dr. onboard that is supportive is so important. Learn as much as you can about fibro. It can cause so many problems.

Hope you get some answers soon.

I know this is an old post but has the b complex help any of your burning mouth symptoms?

I'm going through something similar at the moment.

I'm trying a b-100 complex now.

Thanks.

max