The verdict is in…and about damn time

Back in October I was told to follow up with the rhuematologist to check to see if maybe I had Rheumatoid Arthritis, Lupus or some other like disease. Again, more blood was taken. (Why can’t they just use all the blood the hospital collected huh?) I’m to follow up again in 2 weeks for the results.

I also followed up with my gp because the pain still wasn’t getting any better, neither were the panic/anxiety attacks. They finally got me to agree to take a muscle relaxer (Soma) after she felt the tension in my shoulders. She was actually afraid to give me trigger point injections because I would flinch and she was barely touching me. Sooo…she gave me the Soma and told me to take that with the Lortab for the pain. Good times. Good times. Especially for someone who hates taking narcotics. Oh, and did I forget to mention that they also prescribed Zanax? Oh yeah, for the panic/anxiety attacks. Again…good times.

Back to the RA. All those tests came back negative. Surprise surprise. She finally asks me some pertinent questions, like does this hurt? And how about this? And this? She was going over all of the trigger points of Fibro. She looks at me and said, well, you’ve got Fibro. Really? Nooo. (rolls eyes) She then starts going over all of the symptoms and prescribes Ambien. I’m to take the Ambien, Soma and Lortab at bedtime. Apparently this is supposed to help me sleep. We’ll see.

Oh, and we’re taking more blood tests. Yeah me.

Things just aren’t the same anymore

I have been meaning to update this place for quite some time now (been working on this post alone for almost two weeks) and I just haven’t been able to find the words to do so. Which, if I’m being honest, usually isn’t an issue.

The last post I wrote was written from a hospital bed. I was admitted because no one could figure out what caused the vision loss. Actually, if you want to get technical, they still haven’t given a complete diagnosis. Anyway…their best guess was a migraine induced stroke. The left occipital lobe just collapsed as far as they could tell. They put me through their MRI’s, CT’s, Echo’s, Spinal Taps…I could continue the list of shit they put me through for those 5 days, but I won’t bore you with that. The amount of blood they took from me during my stay was enough to feed a small colony of vampires. And the heart tests, jebus marie…at least I know I’m not going have a heart attack any time soon. And still, after all of that, nothing definitive. After all, a stroke is a stroke is a stroke and there isn’t a whole hell of a lot to be done about it.

Since being out of the hospital, I have seen countless specialists, again, with no real help. There is nothing in the world like not knowing what the hell caused your stroke in the first place. In turn, this not knowing, has caused my panic/anxiety attacks to worsen. Now that’s a treat. My husband loves when I start turning bright red and start to panic for no apparent reason.

Anyway, to summarize…I’ve been tested for everything. They (the dr.’s) had found nothing. The cardio couldn’t help as nothing is wrong with my heart. The neuro was just as useless. The neuroradiologist is the one who made the most since with the migraine stuff. He also ruled out the MS, which made me happy, and is the one who suggested I follow up with the rheumatologist. That though is a whole other post.

So I’m dealing with the vision loss and getting on with things. There isn’t much else I can do…

The beginning of the worst week(s) ever…

Monday, Sept. 22, 2008

11:30pm – just sitting around playing with the new settings on my cell phone, when my vision suddenly ummm…went away. you know how when you rub your eyes, they go kinda greyish but then your vision returns? well that’s what happened only my right peripheral vision never returned.

now, this has happened before only it lasted about 5-10 seconds. After about 10 minutes when it still hadn’t returned, I finally went to wake the husband up and let him know what was going on. He attributed it to the migraines I’d been having. So we decided to give it till morning and see what was up.

Morning came and still no vision. Off to Dr. Garcia’s to find out what the hell is going on.

(these next 5-6 posts are being written after the fact, so please bare with me as I try to remember everything that has happened over the past week.)

Responsibilty sucks

Today hasn’t been a great day. I believe that the lack of sleep over the past several days has finally caught up with me.

I hurt. I feel like I have been beat with a sack of soap and left to die. Everything. Hurts. My back hurts, my hands and fingers feel swollen and are tingling, my legs feel like I’ve walked for miles, and I’ve got a headache from hell. Though I should be thankful it isn’t a migraine. And this all started before 6am and is still going strong.

But like the good girl I am, I went to work this morning anyway. I have found that if I keep myself busy I can keep my mind off of the hurt (at least that’s what I tell myself anyway.) That little jedi mind trick didn’t work so well today though. Believe me when I say, I would have much rather had stayed home today.

Well, isn’t that special

The main reasons Dr. Garcia had me do another MRI and referred me to a neuro was because of the results of my last MRI and the symptoms I am/was currently exhibiting.

My last MRI showed what they called “non-specific white matter disease” (basically lesions on my brain). I was told then that the lesions were “probably” caused by all of the years of migraines. They did not at the time, though I was offered the option for further testing, believe it was MS (multiple sclerosis). I guess MS shows in what they consider a pattern and mine did not have this. Seeing as I wasn’t exhibiting any of the symptoms I am now, we chalked it up to the migraines.

Anyway, Dr. Garcia wanted me tested again. Most of my symptoms mimic MS though so does Lupus and Fibro. But I suppose it’s better to test and rule out than to not test at all.

Oh, by the way, do you know how freaking scary it is when you’re doctor says she wants you tested for MS because you’re exhibiting all of the symptoms and then sends you on your way saying everything will be okay, you’ll be fine. I freaked. (Though in all fairness, I do that a lot anyway.) For close to a month I had this possible diagnosis, this black ugly cloud, hanging over my head. I was not a happy camper.

Anyway…

Today I went to go see the new neuro and get the results of the MRI. Let me just say, I did not like this doctor. He was extremely hard to understand (and not because of a foreign accent), just very bad communicative skills. When asked why I was there, I started with the migraines and proceeded to list the rest of the symptoms. His focus: the damn migraines. Screw everything else. Let’s spend most of your appointment discussing the migraines you’ve had for close to 15 years. Doesn’t matter that your exhibiting hells of other symptoms, we’re just going to talk about the migraines. After 30 minutes of this crap I was like look, Dr. Garcia wanted me to have this MRI because she felt there was a possibility of MS. He looked at me like I was stupid. (I had brought in my previous films and he had the readings from both tests, but yet he hadn’t even looked at them.) GAH! His reaction was to tell me that no, from what you’ve told me, you don’t have MS. What? From what I’ve told you? You’ve only focused on the damn migraines, you haven’t asked me about anything else!

It was only after I listed the other symptoms again did he do any further testing. You know, the balance test, the strength test, etc. I failed the balance test miserably. Everything else he seemed to be ok with. Whatever. When I asked him what he thought was going on, besides the freaking migraines, he was all like…I have a few theories, but I need further tests. Umm, ok. You care to elaborate on those theories? Apparently not, because he sent me on my happy way with a date to have my brain electroed. Something about testing my eye/ear to brain stem responses. Who the hell knows. All I know is I have an appointment next Friday to have this done.

Joy Joy

Lovely day for a MRI

Woke up yesterday morning with a blistering headache and nauseous as hell. Lovely way to start a day isn’t it. The bad thing about it was though is I had to go get my MRI done. There’s nothing like having your head stuck in a noisy ass metal donut for half an hour while you’ve got a raging headache and feeling like you’re going to hurl at any moment. Oh, did I mention I also had diarrhea? No? Well, there was that too. Apparently they had an order to get the test with and without contrast. Well, they didn’t get it with the contrast. Screw that. I have issues with contrast as it is, I did not want that crap making everything 100 time worse. They had no issues last time reading the MRI without contrast, so they are just going to have to deal without it this time too.

I should find out next week what the results are. *crosses fingers*

I need a happy place

I had my followup appointment with Dr. Garcia yesterday. I suppose that it went well enough.

She had 3 pages of test results. Part of me was terrified. Part of me was praying that something was there that would explain all. To a point, I should have expected the results that came back.

All normal. Except 2. The two odd results were extremely high levels of antinuclear antibodies and moderately low levels of methylmalonic acid (MMA). At least I think that last one is right. Low levels of MMA are a sign of vitamin B-12 deficiency and high levels of antinuclear antibodies could mean several things. Most of which aren’t exactly good news (ie: multiple sclerosis, lupus, fibro), you get the idea.

From all of the symptoms I have, it could be any of those. Not exactly a happy thought. She is referring me out to a neurologist and having me get a second MRI done (the first being in May ‘06). She wants to see if the lesions they found in ‘06 have changed, if there are more, or if there is a pattern to them.

So until then, she’s put me on B-12 supplements. We’ll see how that goes.

Well, that didn’t quite work as planned

One of the new drugs Dr. Garcia prescribed for me for the pain was a drug called Ultram. I was told it was non-narcotic, non-habit forming and had very few side effects. I figured if it made the damn pain go away, I’d give it a go.

I don’t sleep very well when taking new medications (my freaky side again), so the first night probably isn’t a good indication of how well the med worked. Though I suppose it was ok. However, the next day was not so good. I had a “hangover” for most of the day. When I called Dr. Garcia, I was told to take the medication earlier in the evening (6pm instead of right before bed) to see if that helped.

Oh good lord have mercy. So not a good thing to do. (We’re guessing here, but since the drug is time released, we believe that there was too much in my system at one time which made me react the way I did.) People I felt high as a freaking kite. I still felt like I had all of my cognitive abilities, but everything was in super freaky slow motion, my brain had decided to take a vacation…you get the picture. Basically I had just about every damn side effect there was.

Needless to say, I stopped taking it all together. It wasn’t worth it. Yes, I only took it twice, but had a bad experience each time, so yeah…I’m a big wuss. Though I may end trying it again if we can’t find anything else that works.

Oh and the Nexium, yeah, that didn’t work quite so well either.

So I’m back to my old drugs…Protonix, Zantac, Advil and Tylenol. Yeah me.