It's Been A Crazy Few Weeks... (update)

Hmmm. So there have been quite a few doctor's appointments since I last updated: I saw #6 (neurologist) once,  #26 (alternative medicine) twice, #25 (the "good" neurologist) once, the gynecologist, the allergy guy,  and I took my kids to their rheumy appointments.   I blew off my own rheumy for now, but I need to get on that.  I also need to make my annual appointment with the neurosurgeon (always fun ...NOT) and the pulmonologist.

Being sick is a fulltime job.

Most of the doctors appointments took place this week or the week before last. I was totally doctored out by Tuesday afternoon that week. My kids were home from school last week, so I did spend some time just being a Mom. That was nice. I have great kids.

So Update: Yes. Let's see...  The kids' rheumy appointments went well. They rheumy basically backed up what the podiatrist had said about bones growing faster than soft tissue (who knew?) and that was the reason for my son's foot and leg pain. My daughter still has a heart murmur. She is almost 8, and if she was going to outgrow it, she should have done so already, so it is time to take her to the pediatric  cardiologist.  I made the appointment, but I'm not going to worry about that until there is something to worry about.

So what else?  I had a fight with the gynecologist She want to refer me to pain management and I basically told her to eff off. I don't want to take drugs for a problem which can be removed in a 10 minute procedure. She told me to find a new gynecologist.  So I decided to, and two days later the pain subsided. For now. (I'm not willing to admit yet that she might have been right!)

I must have been feisty last week. I had words with #6 about reporting procedures to the FDA (see FDA part V on that). She had the results of my latest EEG. All perfectly normal. I was somewhat taken aback by that, because even though I had not had any "events", I had had several dizzy episodes, and indeed I had had a brief glimpse of the tracings from one of these and they had not looked normal to me. But what do I know? I was not Board certified in Neurology the last time I checked, so OK. Whatever.  She is the doctor. On the way out of the office I picked up a copy of report to keep for my records (and to give to #25). I read it when I got home. I called back the office immediately:
"Who's EEG report is this that I just picked up?" I asked
"Why?" said the confused Blonde, "whose name is on it?"
"Oh it's my name, but this is not my report. This report said that there were no push button events when I know I pushed the button at least five time. Also, this report states that I was asleep by 11:31, when I know I was awake at 11:53, because I was pushing the button at exactly that time.  So this is either someone else's report with my name on it, or somebody has screwed up mightily."
"Am I SURROUNDED by fookin incompetence?" (OK I said that past sentence in my head)

They said they would get back to me with a revised report. That was on Valentine's day. I am still waiting. I have written a very nasty letter., it is going out tomorrow if the report isn't in my hand after the mailman comes. My insurance company does not need to pay for this kind of incompetent crap.

The next day I had another neuro appointment. This time it was with #25. I had planned to discuss the EEG results with him, but as it was not my report, there was really no point... <sigh>. I had a little fit in the office, which he witnessed and he told me he wants me to see yet another epileptologist. I don't know if I will bother, but we will see. Then he dropped a bombshell: My neuro exam, which #6 had always insisted was normal as the day is long, is NOT normal. My reflexes are different above the level of the syrinx than below. I have diminished reflexes below the level, which would be consistent with spinal cord damage <UGH>. So after 24 different doctors -including the purported world experts in the field- told me the syringomyelia was "totally asymoptomatic" it isn't. I had fought for months to get a proper diagnosis on this. I had finally -almost exactly a year ago- accepted that it was a  "benign incidental finding on an MRI" and now I find out that it is neither benign nor incidental.  Even if the syrinx is shrinking, my symptoms are progressing.

Fuck. 

(That's really all I can say to that.  What else is there? And what would be the point?)

I also saw #26 and the allergy guy (we can call him #27, I guess). I still have bumps on my arm from the allergy testing. I think I will discontinue that. I have a propensity towards hypertrophic scaring (thank you, Ehlers-Danlos Syndrome), and I really don't want that to have two armloads of bumps for the rest of my life. <sigh>

I started taking thyroid medication, but that is a post in itself.

And today I had another Glucose Tolerance Test, which was not uneventful. Another post.

Sorry. that my update has not left you up-to-date. I hate playing catch-up, but I really was busy.  And sick.

Comments

[Keesha]

SM, asymptomatic? BS.

I said in a blog entry this week that EDS sucks (with a graphic and everything). Isn't it the truth?

[Keesha]

SM, asymptomatic? BS.

I said in a blog entry this week that EDS sucks (with a graphic and everything). Isn't it the truth?

[invisible glue]

interesting about bone growth as opposed to soft tissue. is that true about all people or does it just affect EDS people in this way?

[One Sick Mother]

thanks for the comment.

I think it is true for all people. That was the
impression I got anyway and neither doc was referring specifically to EDS when the conversations took place.

I do wonder if it might be "more" true for EDS-ers however, simply because some of our soft tissue is in more use and more involved with our joints than in regular people. EDSers often have hypertrophic tendons and ligaments, so it makes sense to me that these would grow even more slowly and out-of-sync with bone growth than the garden variety connective tissue.

It explains (in my mind) why all kids get growing pains, but EDS kids seem to suffer more with them than most.