Back to Blogging

I have been gone from blogging for far too long. I will go into some of my reasons and explain where I am now. I just logged into this, considering blogging again, not really sure if I was comfortable doing it again. I looked at my stats and realized I have had over 3,000 views on my page. That right there answers my question. There is an interest in what I've written, what I've had to say.

When I started this blog about myoclonus I didn't understand what I was going to face. In October I had gotten a glimpse of the ugly side of doctors. I had a couple months of the miserable physical symptoms associated with the disorder. The intensity of my situation the first months was massive. That definitely changed over time luckily. Also to be considered was the effects this had on me, my marriage, my immediate family, extended family, friendships and career.

Obviously, there isn't time today to go into all of that and I will try to spend more time on it as I can in upcoming blogs. First, I need to address why I stopped blogging. I think in one word I would say confusion. I was getting such mixed signals from doctors that I was confused at the cause, frustrated with everything I was experiencing. Some doctors said “we don’t know”. Other doctors told me it was the result of medications that I had been on. The last doctor I saw (when I stopped blogging), a "movement specialist" told me after a short visit that I had conversion disorder. His "logic" was that because I had a miscarriage at one point followed many years later by a fairly urgent hysterectomy at a young age that I hadn't properly dealt with these emotions and my body thus was converting them into physical symptoms. He diagnosed this by giving me a shot of B-12 vice the typical Ativan injection during a myoclonic episode. The episode passed and thus his diagnosis. The treatment - psycho-therapy.

Deep down I had a very difficult time with this diagnosis for so many reasons I can't even begin to list them all here. I already was seeing a therapist (just to try to learn to cope with everything I was experiencing). We delved into this theory. My therapist, neurologist, a psychologist, acupuncturist all felt this was ludicrous. There were too many physical symptoms. After the B-12 injection (I found out months later it was B-12 vs saline) and months on various medications I seemed to find a balance of sorts and was doing OK for a couple of months. I seemed to be improving. I was still struggling with some pain issues however the seizures had stopped, I was sleeping somewhat better, I was back to work for about six weeks.

The first week in December, I donated blood. Almost immediately I felt awful. It was the first time I had ever donated blood before. I figured this was fairly normal. Within 24 hours, I had my first myoclonic episode again. After this, I began struggling with tremors. The tremors were right side predominate and over time increased. The seizures became more frequent. Headaches, extreme fatigue, pain everywhere, insomnia, nausea, balance issues, right hand just dropping things and mood swings for sure. The lack of sleep, pain and tremors definitely lead to problems with depression. Its hard to stay upbeat despite all the efforts when you aren’t sleeping and everything hurts all the time – and NO ONE knows WHY….

Doing some research I found something online about B-12 helping to treat myoclonus. I was LIVID that I was given something known to treat myoclonus but told it was psychiatric. At this point, my husband and I made the connection of the previous injection. We attempted this treatment again. Some slight benefits but really very little. We also have tried klonopin for the tremors and sleep (which helps some), topamax (horrible side effects, only treated headaches), ibuprophen around the clock for pain, norco for pain, robaxin. Some short term help and that’s about it. There was discussion about endocrine system disorders, heavy metal poisoning – neurology seemed to be cut out of the picture.

This Thursday I had a series of MRI’s. My neurologist had dug through the mass of medical records and identified a number of tests that hadn’t been done during my hospitalization. I was referred to an endocrinologist. But in the meantime, the neurologist scheduled a follow-up EEG which came back normal, as well as MRI’s of my neck, brain and pituitary gland (the latter two with and without contrast). Friday about 11:30 a.m. the neurologist called to let me know that the MRI showed a pituitary adenoma. He had already consulted with an endocrinologist regarding my medical history and current test results. The endocrinologist’s office called during my conversation with the neurologist to schedule an appointment immediately.

Next Thursday, I will see the endocrinologist and learn more about this newest test result. I am dealing with a lot of emotions right now. Initially I am scared and angry! I know we specifically asked doctors about the pituitary gland at the beginning of this nightmare. We were told for some reason or another that wasn’t possible. I was under the belief that I had been tested for it. They may or may not have done a blood test of some kind. Now that I have had the right kind of MRI to test for it – I KNOW they never looked for it on an MRI before. How dare they do this? I don’t understand how the HELL I spent an entire month in the hospital and NO ONE ever found this? If I had seizure activity – endocrine disorders are a major cause. WHY did they spend a ridiculous amount of time doing psychiatric exams – which I PASSED, every neurological test, along with a million other things – but they NEVER called in an endocrinologist? Seriously? How does this happen? I can think back to almost 7 years ago when I began having symptoms that lean toward endocrine disorders. Every time a different doctor told me it was nothing or it was psychological – I needed a hysterectomy…the list is never ending.

I am scared. I have a “tumor” in my brain area. Yes it is almost ALWAYS benign. There is a chance of surgery to remove it. There is hormone therapy. There is a chance of radiation therapy. I didn’t ask how big the adenoma is… There are a lot of questions, more than I can verbalize yet. In time those questions will come.