Trying to figure out what's wrong

[freesiagirl]

I got sick with some sort of virus over 20 years ago (mono-like). Since then, I have never been the same. I had been doing a bit better (after being put on Prednisone 6-7 years ago), but just went through some incredible stressful stuff with my family, and the last few months I have been so much worse. I am just a wreck. Over the years, I have been to lots of different doctors, tests. Etc... With no diagnosis. I need to start again in trying to find a diagnosis and getting help, but I am so overwhelmed at the thought of trying to search out a doctor again. I have had a ct scan about 8 or 9 years ago, and an MRI about 6 or 7 years ago. One was to check and see if there was a reason why why pupils will be different sizes sometimes, and the other was to check my pituitary as I have pituitary insufficiency (pituitary doesn't make enough ACTH telling my body to make cortisol). Both were fine, no abnormalities.

I started a list of symptoms, it's not complete yet, but is probably most of them.
Eye twitching
Droopy eyelids when tired
Pupils different sizes randomly, off center in iris, sometimes one pupil will be oval shaped
Eyeballs / eye sockets often ache
Sensitivity to light
Difficulty seeing at night

Fingers numb (right hand, index and middle fingers from first knuckle joint to tip of fingers)
Random severe shooting pains in limbs
Random twitching in muscles (mostly legs - thighs)
Muscle weakness
Tremors in hands
Legs will shake uncontrollably with very minimal exertion

Terrible memory loss
Difficulty concentrating
Have to really strain to remember things or to concentrate or make decisions
Poor balance (I fall often, and am very clumsy)

Severe fatigue, never feel rested

Cannot tolerate heat

Dry skin
Large pores on face
Red rash on cheeks
Bruise easily
Dandruff, dry skin and sores on scalp
Thinning, dry hair

Nauseas often
Dizzy often

Can sometimes hear heart beating/pulse in ears

Sleep apnea
Night terrors

Bladder issues (leakage especially when I cough)

Migraines
Frequent sinus infections
Chronic sinus congestion

Choking (often choke on liquids).
Sometimes feel like I can't swallow my food

Anxiety, feel overwhelmed often
Emotions all over the map (cry over nothing).
Difficulty hearing when there is background noise (I feel like my ears are stopped up)
Shortness of breath from doing anything
Difficulty breathing, sometimes feel like something is pushing or squeezing my lungs and abdomen, or like I can't get enough air
I have been diagnosed with Hashimoto's thyroiditis and pituitary insufficiency, but there has to be something else going on.....

I fell two nights ago, off of my front porch. Face forward and down. I had also fallen the day before, but I thought it was maybe my sandals. They were 1 inch wedge sandals, not high by any means. But, then falling two days in a row? didn't feel faint or dizzy or anything when I fell, I just fell for no reason.

I had called the ophthalmologist last week, and had an apptmt early this morning. The doctor didn't see anything wrong with my eyes, but he did refer me to a neurologist. My apptmt is may 13th. And they will fill me in if they have a cancellation. At this point, I am about afraid to even walk.... :-(

I am just tired of trying to get a diagnosis,  I have been struggling with this for over 20 years.  I am so tired of going to a new doctor, thinking maybe they will help me, and they don't or maybe they figure out a small piece of the puzzle, but not the big picture.

About six or seven years ago, when I was put on prednisone, my ACTH and cortisol were low.   The doctor put me on Prednisone, but there has never been any checking of other pituitary hormones, other than one time checking igf1. Which he said was normal.  I don't know if I have some sort of autoimmune disease, like lupus,  or even MS, or if this is still tied to the pituitary.  I am just really tired of not feeling well.

[rumpled]

Hopefully the pit center will decipher the films - and BTW lots of people have films that are initially read as normal and a surgeon or experienced center will find a tumor.

Symptoms... may not be specific so you have to have tests to back it up.

Some state run centers and hospitals that are also, say, cancer hospitals that have pit centers, would have charity programs.

[freesiagirl]

Also, I haven't been diagnosed with a tumor.  I had an MRI in January of 2007 and they didn't find anything.  Said my pit. was normal.   I just went and picked up a copy of that MRI and a head CT scan from 2005, today.  I looked at the images, but they are all greek to me, plus they seem so blurry.   I have only been diagnosed so far with secondary adrenal insufficiency.   But, I think that I may also have GH def. as I have a ton of the symptoms.  

[freesiagirl]

Thanks again!  I am leaning towards a doctor at the Pit. Center at Emory Univ. in Atlanta, GA.  It is 4 1/2 hours away, but there aren't any closer than that, (that I have found so far), and I have family that lives in the area, so I could stay with them, when I have appointments.  
Are there any tips as to how to afford all of this?   Any assistance or anything like that, that I can look into?  

[rumpled]

The PNA site is a start, but check out some of the other sites in the health pages, even if they are not your type of tumor as many have doc lists. You can also check out medical papers and write to them and see if they know a good doc locally.

In general, larger hospitals, larger university centers have a center.

Dexamethasone perhaps?

But even so... one test is just not enough frankly and the dex test is IMHO kinda iffy (I failed all of them! still had the disease as do many).

It can be frustrating.

[freesiagirl]

Do you have a suggestion as to how to find a good Pit Endo?   I looked on Pituitary.org but the closest are 5 hours away.   Is there a good website for searching?

[freesiagirl]

Thanks, Rumpled!   I was tried on different forms of hydrocortisone.  Cortef, etc.. different dosages, different times of the day, timed release....   I did not feel well on any of those, but did feel much better on the Prednisone.  I have often tried to decrease my dosage by a 1/2 MG at a time, and even that seems to be too much for my system to tolerate.  

I know that I need to seen at a pituitary center.  I tried to get my endocrinologist to refer me several years ago, and he said that he knew that I needed to be referred but he does not do referrals.  My insurance would not pay without a referral.   He retired soon after, and the new endocrinologist that took over his practice did not think that I needed to see a pit. spec. so he also refused to refer me.   I gave up, and have just been seeing a Naturopathic MD this past year.   He told me months ago, that he would refer me to a pit. spec.   But, my insurance is now changed and Out of Network doctors are only covered 50% after a $6,000 deductible, and the closest ones are several hours away.   I really don't know what to do.

For now, the Naturopathic Doctor has referred me to an Endocrinologist in his area, who he thinks has more experience with this sort of thing. My apptmt with that endo is in June.   Also, there is a new endocrinologist in my area, on my insurance, so I have an appointment with him also, in July.  And, I have the upcoming apptmt with the Neurologist in May.   I just feel so frustrated because I am worried that I will go to all of these appointments and being that they are not the type of doctor I need to see, It will just be a waste of time and money, and I won't be any better off than I am now.   But, what if........  What if one of these doctors CAN help me?

As for diagnosis, I was so ill in 2005/06 that I could barely function and ended up in the hospital and ER a few times.  I asked my endo to run some hormone tests.   Turns out my ACTH and cortisol were both low.  Not extremely low, but below normal.  So, he did stim test, and another few tests.  One I believe was called Metripirone (sp?).   It was some kind of drug that he had to write a letter of need to order it, and had me take it and then exactly 24 hours later, he had me tested again.   That was what he based prescribing me the Prednisone on.  

[rumpled]

If you have a pituitary issue, then you should be under the care of a neuro-endo at a pituitary center.

Long term pred use is not advised without close monitoring as it will simply shut down your adrenals anyway giving you primary (adrenal) not secondary (pituitary) AI. Pred is not the usual replacement as it is, it is generally hydrocortisone.

jDid you have a stim test or just one test for cortisol and ACTH? It takes a bit to really diagnose properly.

As for the rest - you may have concurrent issues.