Dizzy Me: Medical Update

I know I left you hanging, and I'm so sorry for that. The thing is ... I'm still hanging, too.


Hematologist: What's wrong with you is what's wrong with everyone - you're just more sensitive to it.

Cardiologist: You still have Neurocardiogenic Syncope (diagnosed with at 16 yrs old). Unfortunately, no headway has been made with the disorder since you were first diagnosed. However, as I have vision blackouts, but no actual faints, I show strong signs of having it under control.

ENT: Dizziness is brought on by migraines.

And I refused the medication merry-go-round. I won't do that to myself or my family again if I can help it, and as of right now, I can.


So, I haven't really learned anything new this time around. I am feeling better, though I feel like I can't get my mind focused long enough to really organize anything. I'm trying to stick to the smaller things - they're easier to get a grip on - and to relax as much as possible (which seems to be the one thing all doctors will agree on - rest is the best).

All I can do is keep plugging away and work though those dizzy spells as best I can. Really, it isn't much different from anyone else. :)

Dizzy Me: Last Week

Eventually I will get back to writing stories and telling you about my kiddos. For now, though, it really is all about the doctor appointments.

I had 7 appointments last week. 7.

Monday I saw the Cardiologist, though I had accidentally gone to the ENT first. Thankfully they were in the same building, so it was a matter of a short walk. He thinks I still have Neurocardiogenic Syncope (diagnosed when I was 16) and that all tests looking for something else were a massive waste of time. He also let me know nothing has changed in the last 14 years, so it's all about managing the symptoms with lifestyle and medication. We both agreed medication wasn't right for me (I have worse reactions to it than to me) and went our separate ways.

Tuesday brought the coolest test I have ever had. Seriously. I was in the Nuclear Medicine department. My tech was a Nuclear Mechanic. They injected me with radioactive material from a steel encased needle. Granted, after that I had to lie on my back while they snapped photos for 2 hours, but I did get to watch the glow fill my gall bladder, then watched after the second injection caused it to work, pushing all that glow through my stomach. It was so very, very interesting. With all my tests, I haven't been that excited about one since I was a teenager.

I think they have the results, but I took the day off Thursday, which is when they called, then I forgot on Friday. I'll get to them today and perhaps have something more for later - though this doesn't really have anything to do with being dizzy.

Tuesday was also the 2 appointments for my boys - Joshua's shots and Sebastian's check up.

Wednesday I had a hearing test I didn't know about until Monday through another doctor's office, then officially Tuesday when they called to confirm. My hearing in fine, but I guess they can perform tests that see if a tumor is present. I didn't know that, so it was pretty cool. I passed with flying colors. After the hearing test I went straight to the ENT. She had nothing for me, except to say she disagrees with the Cardiologist and every single doctor I've ever had. She believes I have dizziness brought on by migraines and has sent a note to the Neurologist, who I see toward the end of the month.

Ah, a diagnosis war. :-D I've been through those many times. These, though, at least won't war with each other. The Cardiologist isn't putting me on any medication, so I guess we'll see what the Neurologist things, particularly since she's treated me for migraines in the past.

The 7th appointment was the Endocrinologist on Friday because of my high thyroid count. I love watching doctors talk to me about why I might be there when they honestly see no reason for it. Gotta earn my co-pay, I guess.

I don't have another appointment until next week, then I have 2. I'm not sure when I'll see the gall bladder guy again - gosh, I don't like that. I can't think of what type of doctor he is. Anyone else know?

Anyway .... as long as I get enough rest and eat well, and keep low-level exercise going, I feel better dizzy wise. I'm remembering old coping tricks as I go and they're working pretty well so far. If it gets worse, I can always get pregnant again. One of my doctors did tease me about becoming the next Mrs. Duggar, actually. She was joking, though.

I think.

Dizzy Me: Almost There

Almost. I'm practically breathless here. It has been a crazy whirlwind couple of weeks, as I'm sure others have felt as well.

For me, other than the holidays and visiting family (who, sadly, went home on Friday), I've had a lot of tests done in the last week, a doctor's appointment with more to follow. This week is jam-packed with different doctors appointments and at least one more test and blood draw. After this week I only have two more scheduled appointments, but there are more to come because I have yet to schedule any follow up appointments with any doctor pending any tests that haven't yet been scheduled by the doctors I have yet to see.

So now you can understand why I'm breathless.

Oh, and I start watching my sister's kids again this week, since school is in full session for her whole family. Lots of joy figuring out scheduling there, though we're managing to hammer it out.

On the plus side - kind of - my thyroid came back overactive. I'm not exactly sure what that means yet, but will hopefully find out once I see the endocrinologist this week. I have a feeling it's only overactive because I had a cold at the time of the test, and apparently it produces more hormones in response to a virus. But as it is the only test that has come back abnormal (though it never has before, mind you), it's definitely something to check out.

The hematologist said everything is fine on his end, and the blood clotting proteins that are the bane of my existence when I'm pregnant mean next to nothing other than to make sure I move about, eat right and don't smoke. He said my OBGYN may not believe they're not a threat despite the evidence, however, so that's a bummer if I get pregnant again.

The - um - surgery consult for my gall bladder doctor says I probably have gall bladder disease, but the ultrasound I had wasn't helpful, so I have a different test to undergo this week. Hopefully it shows something, or I'm left with stomach pain, possibly more tests, or enough evidence to support the diagnosis of gall bladder disease that isn't strong enough yet for the insurance company to pay for the surgery.

Overall, this is more progress than I've seen in years, so it's actually kind of exciting.

I cannot wait until this is over. And they better figure something out this time because this is a lot of time and a lot of money (though, granted, I've said the same before). Thankfully, we have some pretty good insurance, but still. It needs to be done. I need to be done with this and on the way to healing so I can return to life as normal with the boys and my writing.

Dizzy Me: Dr. Appt. 2

Yesterday was my rescheduled appointment. It turns out the test was an EKG (electrocardiogram - testing heart rhythm rather than electric activity in the brain). The test was a lot shorter than 30 minutes, but I'm still glad I rescheduled so the boys weren't there. Could you imagine the jumps in heart beat every time they got into something?

I also had my face to face. On the downside, I'll be put through a lot of tests I've already had, other than the EKG. I'm scheduled for an ultrasound, an MRI, blood work, and a heart monitor you carry around for a bit. I'm also scheduled to see a Cardiologist and Neurologist. On the plus side, I love my Neurologist (she helped get rid of my migraines) so I have high hopes there. Also, I'm being sent to a Hemotologist (blood specialist), Optometrist and an EN&T, none of which are specialties I've been to before for this. And in all this confusion, we're also getting me in to see a surgeon for my gall bladder.

Oh, and most of this happens between December 27th and January 9th, with an outlying appointment later in January. Unfortunately, they just weren't able to schedule everything on the same day. :P

Thankfully, I'll have family visiting who can help with the boys and a husband who is off on holiday for much of it. Then an amazing day care provider and other family. This network of help is so different than my last run with all these specialists and tests. Before, I only had one person to help me, to drive me, and her family of 4 to support me. No one else believed. How the world has changed for me, and I hope that means something will truly come from this.

Also!! I ran in to my Grandma yesterday. Turns out she had an appointment on the same day. I let her know what I was in for and she huffed. She asked me if I had a particular disease, one she had just been treated for last August. I was kind of miffed, I can't lie. Why wouldn't she have said something then? But, better late than never. I just have to get through the busy tone on my doctor's phones and ask them to add it to my history and alter any of these tests to look for it, if they need to.

Wouldn't that just be amazing? Ah, the hope. It's nice, but it's also bad when things doing turn out. Still, this is a family member, so her suggestion is a lot stronger than others.

On a side note, apparently there may be a few other outlining things we find (which wouldn't surprise me, to be honest). Which is why I'm going to specialists I haven't seen before. Apparently blood tests I had during this last pregnancy have raised a bunch more questions.

Haha. After so long, I'll take anything.

So there's a quick-ish update for those of you following this series. Thank you for your care and concern. :) I'm kind of looking forward to this round of tests. Then again, it does always start out that way. :P

Dizzy Me: Crowd Sourcing?

I've decided for the time being to blog about whatever is going on with me. I'm not quite sure I'm to the 'share the post on G+ or FB' part, but writing about it has helped me calm a bit. I mean, when I made my first appointment, I cried. Now I'm re-focused and ready to go, something writing has always been able to do for me.

Right now I'm putting together a document for my doctor, listing all the information I can remember. I learned when I moved from Arizona that not all records come with you. There's even a neurologist out there who refuses to let my records go despite many requests from myself and other physician offices. I wonder if it's because there are notes in there on him telling me the fuzzy feeling in my head came from static electricity in my hair and I needed a better conditioner .... ?

(No, I'm not joking, sadly. The worst part is not believing him, but looking it up in case I was wrong. He is a doctor, after all. Then I found out I was right. This guy who was supposed to be taking care of me wasn't taking it seriously enough - or he thought I was a hypochondriac. Lovely.)

I don't remember everything. I don't think I remember every test, and I certainly don't remember every medication. I honestly thought the doctoring world was more organized than it is. It's getting better as everything goes digital. I'm excited to see the medical world my kids grow up with where it hopefully results in higher efficiency and lacks the need to have tests repeated every time you're sent to a new doctor. Particularly since it's frowned upon for patients to really know their medical history, or see the tests, since we laymen won't always understand what's there. (Oh, taste the bitterness.)  ;)

Anyway, so I'm putting this document together and I sent it to my husband to look over in case he notices something I missed. He still hasn't read it through, but he is getting excited about what we could do with it since I'm using Google Drive to draft it. We can share it with people we know in the medical field and see if they spot a test or a theory that hasn't been explored yet. We can even crowd source it and ask other doctors to send us their theories to then take to my doctor.

I'm almost there with him, though I always hesitate to do things like that. It isn't privacy so much as pushy. But, I guess, this would be voluntary. Still ... I'm not quite comfortable with it. But then, exactly how many opinions would we get, and how many good doctors would pass because they don't have my whole file? The question will become if I'm desperate enough to agree to crowd sourcing, I think.

What about it? Would you crowd source your symptoms if no one had been able to find lasting answers for the past 15 years?

Doctor Appointment Fail

I had a doctor appointment today for my dizziness. Since I was going in, I called this morning to move Sebastian's flu booster from tomorrow.

I see the Nurse Practitioner who is only in every Monday and Wednesday, then every other Friday she and the doctor have another office they split in another town. Though I can drive to the other town, I stay here since I have to take my two boys with me, something I told them when I made the appointment.

So when I showed up today and they wanted to hook me up to the EEG (a test that measures the electrical activity of your brain), I was a bit surprised. This procedure takes at least 30 minutes, usually 45 and possibly an hour.

With a 9.5 month old crawling around and a 3.5 year old walking around? Not likely. It would have been nice if the office had told me I would have this procedure either in a phone call, or even when I'd called to get Sebastian in. Then I could have found child care ahead of time. As it was, I scrambled to find anyone available.

I called my aunt - her number was disconnected. I called my friend - she didn't answer. In a last ditch effort I called my day care provider. She said she could, but it would be a few minutes. After I hung up I worried she wouldn't have a car seat for Sebastian. I asked the nurse if I could drop them somewhere, then come right back. She went to ask the NP.

With doors wide open, I heard the NP. If I couldn't be seen when she could see me, I would have to reschedule. She wouldn't even come talk to me unless I had the EEG. If she had, I could have told her the EEG would be negative - as in normal. I could have told her I'd had the test many, many times before and it had always been normal. As had my MRI, EKG, ultrasound of the heart and arteries, glucose blood tests, hormone blood tests and a whole slew of others. All that had come back positive was a tilt table test when I was 16, and all that tested was if I would faint if my heart rate was artificially accelerated.

So, I called my day care provider to let her know I was rescheduling, and thankful she'd been willing to gather all her kids up to come and get my boys. Sebastian got his shot. There's the upside. He didn't even cry, my brave boy. He's sleeping it off right now.

I have a rescheduled appointment in two and a half weeks. This time I know what's going to happen, so I'll have a place for the boys. I'll get the test done, watch her wonder where to go from there. Maybe she'll listen to me this time. If not ...

Have I mentioned I've had many, many doctors?

Here's to hoping despite this rough start, there's a successful ending.