One Step Forward, One Step Sideways

To quote a friend - my doctors appointment was Good News. One step forward, and one step sideways.  I think that is a very accurate account.

Now I am attempting to write this for the third time. Yesterday quite literally exhausted me. I fell asleep immediately when I got in bed last night and slept in. Started to write this afternoon and slept 4 hours. My body still feels so tired.

Tonight I am just miserable. I seem to be fighting a cold that my daughter brought home from work. I ended up suddenly feeling very odd (symptoms I have come to learn least occur without reason, its not the first time). Gastrointestinal unrest, irritable bladder, dry mouth, dry eyes,  tension in shoulders followed by this tingling feeling in my arm or arms, chest pain, heart racing and then yes the jerking of limbs and a myoclonic episode, seizure, or whatever the fuck it is.... To be followed by ativan. And 20 to  30 minutes some symptoms subside...

Yes, all the doctors are aware of my symptoms along with enough to fill 3 more blogs. So, where are we - the endocrinologist was good.  The adenoma (always benign) is 3 mm in size, or about 1/8 inch... Its not putting pressure on anything. He pointed out a number of concerns. He took a few good size vials of blood and Sunday to Monday I will be doing a 24 hour free cortisol urine test.  We really won't know much until late next week as to what is going on. The side step - he doesn' t believe seizues are related :(

I was scheduled to see a movement specialist at another large university hospital today. I was so frustrated not knowing if I should go - lucky a short phone call with his staff, provided that he would need this endocrine information first. Problem solved -

I am falling asleep again. More tomorrow. Love to all

What have I experienced - Pituitary Adenoma

I had a few folks ask for clarification yesterday after my blog.  I have a confirmed pituitary adenoma. For now it is assumed this is the source of my health issues. I believe that this has been the source for quite sometime now. I can actually look back to health issues nearly 8 or 9 years ago and wonder if perhaps this goes back that far. I had a myriad of symptoms and the doctor was positive that I had an adrenal problem. The tests were negative, however, my pituitary was never checked.

I try to find a balance educating myself about a diagnosis online. I personally need to have information to feel at ease. The unknown totally freaks me out. I am cautious to look at sites such as Cedar Sinai (recommended by my physician), UCLA, John Hopkins. All provide some very good information on the condition and it's variety of concerns, effects, treatments, etc. It's helped me to understand why I have some of the symptoms I have experienced for SO LONG!!!

Just a basic "list" - diarrhea, nausea, racing heart rate (I've been told this was anxiety, but I didn't feel anxious just like my heart was beating out of my chest), mood swings, headaches, problems with my periods I don't even know how to detail - I ended up having a partial hysterectomy to "stop" part of those symptoms...myoclonic seizures, essential tremors, loss of balance, dropping things (same hand as tremor), unbearable joint pain, muscle weakness, bruising, hair loss (hand fulls), acne - quite odd in nature really, facial sinus pressure, insomnia, fatigue. Any attempt to exercise - I mean walking slowly for 10 minutes I would be so sore no amount of muscle relaxers, narcotics, anti-inflammatories would treat the pain for a couple of days. Pain so intense I can't sleep. Heat intolerance (sweat like crazy if it's the SLIGHTEST bit warm), cold intolerance...the past two days I have been melting. I prefer the cold intolerance. I can always seem to get warmer.

I'm not saying any of this to complain or for sympathy. I want to be clear on that. My whole purpose of this blog is to educate, help others dealing with the same thing really. I started this process and I looked and looked. Finding something, someone experiencing anything like I was - I never found it. It is so frustrating and so lonely to go through an illness - undiagnosed and without anyone that is or has experienced what you are going through.

I started today's blog - I was going to talk about dealing with the diagnosis. I am a bit focused on the physical symptoms right now. My symptoms the past week have been yuck. I feel rotten. As has gotten so common, it is affecting my ability to function even simple tasks - cleaning around the house, work, interactions with family and friends. The last few days the gastrointestinal symptoms have been awful. The headache and pressure strong, as well as the muscle and joint pain. Last night my heart rate was crazy and as usual lead to a myoclonic seizure and ativan injection.

My emotional reaction is all over the place. I guess in time I'll get better in touch with that and how I'm feeling. I'm not really sure how to put it all into words quite yet. I'll get there... Maybe next time? Till then, please feel free to ask questions or comment, what not. I'm open.