The Conclusion-But Not Really

I started to write the rest of what happened after getting into the ER. I didn't get very far. I've found that thinking of all of what has happened-just health related (not counting how my job is involved, how this has affected my son, my relationships with other people & my finances) is just details that I would rather not get into-and the details are unimportant. If I am going to spend my energy writing, I don't want to spend it on those details.

But I don't want to delay getting to real-time any longer. And when I think we've figured things out-with what that attack was-we continue to be unsure.

So, this is the low down.

At the ER things progressively got worse. It was getting more and more difficult for me to talk and eventually I had no strength in my right arm, the left side of my mouth was pulling more than it had before and it got really scary-the base of my head was killing me. It felt like someone had two huge fingers pushed into the base and pushed up into by brain stem. That didn't seem to concern anyone. They did a CT right away to rule out a brain tumor or stroke. The CT was fine. It didn't show signs of either. They didn't know what was causing my symptoms. The doctor there consulted with a Neurologist over the phone and they decided that I could go home but they wanted me to see the Neuro on Monday, it was Friday. But they told me that if it got worse that I should go back to the ER ASAP. He wrote me a note for the rest of the weekend saying that I could go back to work on Tuesday.

Because of referral bullshit due to the Robot doctor that I had seen before going to the ER, and the referral going through under "STANDARD" status, I wasn't able to see the Neuro for possibly a week. Obviously this was very upsetting and I made an appointment to see my usual GP, Dr. Park the next day-Tuesday 5/5/09.

I told him all that happened, and he wasn't sure what was going on either. At this point my mouth was still pulling to the side, I was still very weak, tingling was still there but had subsided a little bit, but my right leg was still numb and so was the skin on my arm. I was still having a difficult time talking, but not as much. I was about 30% better over all that day. At first he thought that maybe it was MS, but when I told him that I had an MRI and LP done about 9 years ago and they were normal & inconclusive-he dropped MS idea. His second thought was that maybe I had an anxiety type thing going on and I hyperventilated. I told him that I never did. He said that I could have without knowing it, and lack of oxygen would cause the issues I had. But he didn't see me at my worse on Friday when I was at the ER. I told him, respectfully that I thought he was wrong, but if he was correct-what would we do about it? He said I would take an anti-anxiety med and if I was breathing improperly the medication would calm me and I would begin to feel better within a day or two. I decided that I would give it a shot, even though I knew that wasn't my issue. While I was there, Dr. Park's assistant worked some magic and got the referral pushed through while I was there. Dr. Park wrote me a Dr's note to be off work through that week-so I wouldn't have to go to work before seeing the Neuro. Oddly enough I was able to make an appointment for the next day to see a Neuro.

5/609-I told the Neuro everything that happened. He asked me what my other doctor's had thought. I told him that my Rheumie thought MS and so did my GP, at first. The Neuro-we'll call him "Dr. Absent" said that didn't agree. He thought that it was a Migraine Phenomenon. I told him that I didn't have a Migraine when this happened. He explained that you can have a Migraine and not experience a typical headache. That the Migraine can cause "stroke-like" impairments. The impaired speech, numbness, tingling, facial pulling, etc. But he ordered a Brain MRI and a Nerve Conduction Study to make sure, and he said that he didn't think I needed to do an LP-just yet. I must have made a face to the thought of the LP, and I told him that I had done one years ago and that recovering from it was horrible and it was inconclusive. He reiterated that I didn't have to do that-at this time.

5/8/09-I woke up to double/blurred vision.

I had to wait 2 weeks to get the MRI due to the referral process and getting the first available appointment after it was approved. And I would have to wait until 5/29/09 for the Nerve Conduction Study.

It was in the third week that my Fibro reared her ugly head. My Neuro put me on steroids, after being on a Migraine medication for two and a half days and my symptoms didn't get better besides slightly less sensitivity to light. The day after my first dose of the steroids I woke up with Fibro pain in my legs. For the entire time up until then I hadn't felt "Fibro-y" at all. I don't know if the steroids did it, or the fact that I had a very hard time sleeping after I took them. Sleep is very important for people with Fibro.

Once she got her, Fibro that is...She got here if full force. It's the worst it has been in many years. So, aside from dealing with the issues that the unknown attack left me with, I also had to deal with pain and fatigue that brought me back ten years. To say that things have been difficult is a major understatement.

I had to take the month of May off with Medical Leave and I applied for Disability Insurance Payments.

I had the MRI on 5/15/09. The results ended up being "normal".

I had the Nerve Conduction Study on 5/29/09 at the Neuro's office and that was "normal". He also did a EMG, that's where they stick a needle in your muscle's. I got stuck in my arms about 20 times. With the Nerve Conduction Test-being shocked about 30 times-at least and then the needles...Well, it was probably the worst thing anyone can have done when they are in the middle of a very bad Fibro Attack.

The Neuro said that since all of the tests came back normal, there isn't anything Neurologically wrong with me. Basically-there's no evidence that I have MS. He had no answers to all of the symptoms that I was experiencing. He brought up doing a LP, but I told him AGAIN how I had one years ago and even if O-Bands showed up, it isn't enough to diagnose me or treat me with medicine. What's the point of going through THAT torture? None.

He said he would send all of his reports and findings-advising my doctor that I should see an Endocrinologist. He never went back to his original first guess that I had a Migraine Phenomenon. I suppose it was because two and a half days of Migraine medication didn't make it all better and I was still experiencing blurred vision. This didn't seem to bother Dr. Absent. He ordered an X-Ray of my neck, since the pain in the back of my head and top of my neck was still there, and some more blood work. Aside from that, he was done with me. And, I was more than done with him. His office was horrible-the staff there were the most uncompassionate people I think I've ever experienced in my entire life. This "Doctor" wasn't much better.

6/1/09-I saw my Rheumie to discuss treatment for my current BAD Fibro attack. I had been on Lyrica for about 3 months taking it once daily. He decided that I should take it twice a day and see how my Fibro responds to it. He wouldn't give me any other medication. I would have to suffer with the pain. We didn't want to confuse what was helping or giving me side effects if I was on more medication than the Flexeril, Lyrica and Meloxicam-meds that I had been on for a long time. Would adding another daily dose of Lyrica cut through my Fibro attack and would I be able to go back to work in the next month? We'd have to wait and see.

6/2/09-I saw my GP, Dr. Park to discuss where we were at that point and the issue of my eyes bothering me so much. I got advice from people on the website, Patients Like Me.com that I should see a Neuro Ophthalmologist. Dr. Park was very concerned that I was having vision issues, got the referral to the eye doc ASAP, and I was seen my the eye doc the next day. Dr. Park also ordered MORE blood-work.

6/3/09-The eye doctor didn't find anything wrong with my eyes. In fact, my RX that I have for my glasses now-the same glasses I've had for about 5 years-hasn't changed at all. I was totally baffled by this. How could I wake up one morning-a week after the attack-and have nothing WRONG with my eyes? "I don't know." he said.

So, with the MRI, the Nerve Conduction Test and the eye doctor saying that my optic nerves were, "Perfect" I was finally ok with where we were diagnostically and moving on from the issue of MS.

I spent a lot of time trying to figure out all of this. I couldn't help but go back to the Neuro's first idea. Migraine Phenomenon. Why did he let that go? Because I took a medication for a couple of days and it didn't make me all better?

I decided that I needed a new Neuro to evaluate everything and get their opinion on the Migraine issue. I've had headache/migraine issues my entire life. I did the research on Migraines and what happened to me on May 1st was spot on to a Silent Migraine. I didn't want to go back to Dr. Absent, or any other doctor in his office-I never wanted to go back there again. Oh, and I finally found out-a week later when I had to call his office to find out about all of the lab work that he had done. All of it was "normal", "He would have called you if anything was wrong with it." Awesome-you people SUCK!

6/5/09I talked to Dr. Park about the lab work he ordered, it was all "normal". I told him that I wanted to see another Neuro to go over everything and start a Migraine treatment. He said that I could see one of the other doctors in that office, but I didn't want to do that. We went over everything and my thoughts on it being the Migraine thing, and wanting to get on treatment for it because it was so bad and it set my Fibro off-I needed to start taking whatever meds I had to to fight off another Silent Migraine or any other type of Migraine. Dr. Park agreed that it does sound like it was the Migraine thing and said that if that's all I wanted to see another Neuro for, that he could treat me himself.

That sounded great, I hate Neuro's and if he knows enough about treatment-awesome. The only problem is that he was going to be gone for the entire next week.

My vision continued to be blurry. I started to look up all oft he medications I am on and see if blurred vision was one of the side affects. It is with Lyrica. But I've been on Lyrica for months. I wondered if it was the new med that Dr. Park gave me for anxiety-Clonazapam-at the beginning of the month. I looked up the side effects, and blurred vision was listed. The time frame fit perfectly to when I started the medication to when I woke up with the blurred vision.

I decided to stop taking it and see what happened. I only took it at night because it helped me sleep, and with all of the pain and discomfort-I needed to be knocked out in order to sleep. After 3 nights of not taking it, I woke up to much improved vision. By the 4th night of not taking it, my vision was pretty much back to the way it was right after the attack-difficulty focusing, but not blurry. It was the medication that was the issue. Go figure. The medication that my doctor gave me to help with anxiety actually CAUSED a lot of anxiety. So ironic.

However, I was having a very hard time falling asleep. The back my head, that same area that I've been having pain-with the feelings of fingers and pressure up in my brain has not gotten better and I realized that not taking the Clonazapam didn't knock me out enough to be able to deal with the pain in my head. As the days went on without taking it, the worse it got. After not taking it for 4 nights brought me to the morning I had my appointment with Dr. Park.

5/12/09-Friday, I had been having horrible allergies all week along with EVERYTHING else. I felt horrible. I hardly slept the night before because of my head pain, the back-fingers in my brain-and the front-allergies. Dr. Park walked into the exam room and asked me how I was. I think I just made a noise. "Not good huh?" he asked. "No, not good." I said.

First I told him about my experiment with the Clonazapam. Then I told him about the head pain. We went over all of the diagnostics that I'd done over the last month. Dr. Park asked me if Dr. Absent had me do an MRA along with the MRI. I was sure he did not-I had never even heard of an MRA. Dr. Park said that he was sure Dr. Absent would have ordered one, since that's what Neuro's do in cases such as mine. However, upon digging in the computer, he found that we did not do an MRA. Dr. Park was concerned about this, and with me having the pain in the back of my head. Bottom line-he wanted to make sure that I don't have a leaking blood vessel. That I didn't have a Brain Aneurysm, that I wasn't continuing to leak blood. He had a patient like me years ago-same age-same issues-Brain Aneurysm. He just wants to make sure that isn't what's going on before starting me on Migraine Treatment.

Obviously, this is concerning. In so many ways. Why hadn't this come up before? Why wasn't an MRA ordered? Why was my Neuro-"Dr. Absent" so fucking ABSENT and PASSIVE in my treatment?!? What the FUCK?

He wanted to discuss the MRI vs the MRA with the Radiologist, see if the Radiologist could look at the MRI and see if he could diagnose blood vessels. He is going to call me on Monday to let me know what the Radiologist says and most likly, order the MRA. In the meantime he gave me Tylenol 3 for the pain, he wanted to give me Vicodin-but I don't like it, it makes me nauseous.

The Tylenol helped, it took the edge off for the rest of Friday. However, I could not sleep. My head was killing me, even to lay on my back with my head on the pillow hurts, to lay on my side hurts, to lay on my stomach hurts. Finally at nearly 5 AM I took a Clonazapam. Passing out, getting some sleep was worth blurry vision-if it happened with one dose.

As I write this, I wonder why I didst push Dr. Park to talk with the Radiologist that day, to order the MRA that day. Why wait for Monday? I don't know, I guess I was sleep deprived, in pain and miserable with my allergies.

I sat up in bed, right after I took the pill and realized that my head didn't hurt as much when I sit up. I found that interesting...And passed out. When I woke up, I was very aware that it was another morning in the last few weeks that I am laying sideways in bed. With my head halfway hanging off the side. Why is it better when I'm up-right? Why do I wake up with my head hanging off the bed? Why is it worse when I lay down?

I called Urgent Care to see if Dr. Park was possibly working there this weekend, but he wasn't. I'm not experiencing anything different than I had, but it's obvious that the pain in my head is serious enough that I can't lay down without being drugged out.

It's nearly 6 AM on Sunday morning 6/14/09, and I've been up all night. Scared, mostly to find out that the pain is worse when I lay down. Scared to have to take another Clonazapam to knock myself out. Frustrated that this mystery continues...

Tired.