Tuesday, July 5, 2011

Getting to a diagnosis

Note: I started to write this posting a few weeks back when I had a follow-up appointment with my doctor. It's been something I've been struggling with for a lot of different reasons. Alas, here it is....

I Just took a huge sigh of relief. I guess I was more stressed and worried than I originally thought I was. Maybe the worry has been part of the reason for my sour mood? Maybe the worry is why I'm a little slow with the weight loss as of late. Time will certainly tell.

Now, just what am I talking about?

Well, it's a long story really. And it's something I've debated putting out here for all to see. Maybe now is the time...

Let's go back a few years in time...

I've been complaining to my (then) primary care doctor about a number of different ailments. I was exhausted. So exhausted that I would sleep most of the day. I could hardly hold my frame up. I was always told "you're a Mom. We moms tend to wear ourselves out, you'll be OK". I believed it. Kind of.

Not only was I tried, I was  becoming forgetful. Not just "where did I put those keys" kind of forgetful. Nope. I was forgetting words. I could tell you I wanted "the thing that you write with, it has blue ink in it" without being able to find the word for pen. I shouldn't be writing in past tense here. This kind of stuff still happens. Regularly.

I forget my friend's names from time-to-time. I'll be telling a story about someone and completely forget their name. I know where they live, I know how many kids they have, I know all these details. Can't. find. their. name.  It even sometimes happens when I am talking to someone. I'll go to say their name and can't, because I don't know what it is - for just a long scary moment.

Oh, and how about the other day when I was walking out of Michael's and lost my car. Seriously. There are 3 rows I could have parked in. I started to panic. I told myself to calm-down, take a deep breath and relax. I found the car no problem. Just had an anxiety attack in the process.

For a while I was thinking this brain thing was just in my head (haha). I have a friend who's witnessed it in action; she asked me if I may be having a stroke. Nope. Just can't remember $hit.

Scary stuff, right?  Yup. And Oh, I am just getting started. Although the rest of it isn't that scary, well, maybe a little scary. I'll be all right. I hope.

Tons and tons of blood testing came my way with lots of different theories...

I have an elevated Sed Rate.  "Nothing to worry about. Just means you have inflammation in the body. You're probably developing an auto-immune disease"

A vitamin D deficiency was also found (in August!! and it's no longer the case)

And I can't forget my favorite blood test result. The one that showed I have Hep C. WHAT?!?!  No worries, it was a false positive (after lots of testing and retesting and a trip to Boston to see a gastroentorlogist).  This one boiled me though. I am not (never have been) a drug user and I've never had a blood transfusion so how could this even happen? No one could answer!

More testing.

Lyme Disease? Nope
MS? Nope
Lupus. Nope, but maybe. Probably not. Best to get more opinions on that one. Finally came back as a no.

I do research on my own. I feel like crap. I need it all to stop.

I read all about different diets and pills and supplements and, and, and....

Ended up trying the gluten-free thing. And it helped! For all of 6 months that is. I felt great!  My speech pattern was better, I was energized and ready to go and all the other ailments were at bay. Life was great. 

Then a train hit. I started to feel worse than I ever had. I'm forgetting things. My energy is rock-bottom. And I have pains. Pains in my bones. Stabbing pain.

A year goes by. Still feeling like a piece of garbage. But I can't remember all my symptoms even when I was having them. That's so sad.

Fast-forward to last October....
I see my (again, then) primary care because of these bone pains and the memory issues. She says I should try coming off the Fluoxetine (I had post-partum). So I did. That seemed to help the memory stuff; only temporarily. As far as the bone pains go? She said, and I pretty much quote here..."When we doctors can't figure out what's going on with a patient, we tend to blame the patient" Nice, huh?  So, what she was telling me was that I was crazy. Great.

I had follow-up appointment a few weeks later with the Nurse Practioner. I told her about my pains. She thought I may have Fibromyaliga. Suggested seeing a rhemetologist. I explained how I had seen one before...she said "get a second opinion".

Off I go to Boston this time. Have to see the best-of-the-best. And Thank God I did!  This Doctor I saw put me through a gammot of tests! We re-tested for Lupus (it was still on the table because I had one of the markers for it), tested for this and that as well.

I'm going to leave you here. This post is getting rather long and I really want to paint the picture of what the beginning of 2011 looked for me...


  1. Wow, how scary! I'll be praying for you that you find out what the issue is!

  2. so scary, Jenn. I would be a freaking mess, scared, worried. I hope you are getting answers!!

  3. wow! Scary! Thing about doctors we can't live with them can't live without them! Sometimes you go to a doctor and leave with nothing. I have an auto immune disease, but can't say it's anything like this! I hope and pray that things will get better for you and you will get answers!! I hope you post more because I will continue to read!