Sunday, May 31, 2009

The Weird Rash Thing

So, you might remember that I took a tumble on Thanksgiving Day and messed up my right knee pretty badly in a superficial way. I had a nasty wound that went deeper than I realized at first. It took ages to heal but finally did, leaving a red scar.

Then I noticed a funny white bump: something hard underneath the skin on the edge of the scar. I assumed it was a clogged pore and would eventually clear itself. Instead, I got more of them.

They cluster in weird ways. The group at the top of the photo (which is the bottom of my knee) has at least 10 of the little white bumps. The other ones you can see in the photo are groups of at least two or three.

So far, all the doctors I've shown it to are fascinated and looking forward to finding out exactly what it is. I see the dermatologist on Wednesday and assume she will biopsy it, and we'll some answers about that, at least.

Friday, May 29, 2009

An Addendum or Clarification

After reading yesterday's blog post, Scott reminded me today that when my odd little episode happened, it was actually somewhat bilateral at first. Initially, I could move my left leg semi-normally, but both arms were almost impossible to lift. I think my right arm could get just a couple inches at first, but my left could reach a bit farther initially and full motion came back much faster on the left than the right.

He said that if he had understood how asymmetric my symptoms were as they settled in, he would have ignored my telling him not to call 9-1-1.


I have a crazy medical appointment week ahead next week.

Monday: EEG at neurologist's office
Tuesday: Semi-annual dental checkup (Here's hoping for no cavities!)
Wednesday: Dermatologist appointment (I keep meaning to try to take a photo of my knee so y'all can see the weird mini cysts I have on the scar from my Thanksgiving Day fall.)
Thursday: My minor surgical procedure (D&C and endometrial ablation)
Friday: Recovery from Thursday

Yes, I am single-handedly supporting the Portland, Ore., medical community. And I'm not even dealing with the things that seem less important, like my sinuses that the ENT insists need surgery and the allergy testing my immunologist has been asking to do.

(The immunologist wants confirmation that I have serious allergies because then he won't feel concerned about my high eosinophil levels. I keep telling him to just take my word for it that I have serious, year-round, major allergies. I don't need testing to confirm that, although it might be interesting to see if I've picked up any new ones in the past decade or so since the last time I got tested.)


Thursday, May 28, 2009

A Funny Thing Happened ...

A weird thing happened on Monday, and I have struggled to describe it to two doctors so far. I'm not sure I'll do better here. It's all kind of foggy.

I was having bad vertigo, which happened a few months ago when a sinus infection settled in my inner ears so I wasn't thinking too much of it other than to complain to Scott that I felt drunk without the fun part. Room spins and such.

Scott was starting to chop veggies for a stir fry for dinner, Ellie was watching something on Noggin, and I got out of my recliner to refill my water bottle with Crystal Light. It's 8-10 steps from my recliner to the refrigerator and when I got there, the dizziness hit me so hard that I grabbed the counter with both hands and tried to hold on without fainting. I didn't faint. But I did collapse after a moment or two that seemed to last forever. Scott went to get me a cool washcloth without saying anything, and that felt good. I asked him to give me my water bottle, and he held it out to me and I realized that I couldn't seem to lift my arm more than an inch or two. He took my pulse, which was 130ish, but my "normal" these days is 100-110 at rest and I was definitely freaking out so that's not as big a rise as it could be.

I couldn't get up off the floor, my right leg wasn't really working either. I lay on the kitchen floor for awhile and eventually regained the ability to move. (I also decided that if I'm going to collapse and not be able to get up, I need to lose enough weight that Scott can lift me off the floor when I'm dead weight!) We talked about calling 9-1-1, but I was mortified at the idea of being carried out of the house on a back board to an ambulance. Yeah, I know that's silly. But I clearly wasn't dying and ...

Even after motion came back, I still didn't feel "normal" on my right side. Tinglier, heavier. I was shaking/trembling. Another weird thing was that the right side of my mouth was shaking too. So weird. By bedtime, I could walk, but couldn't lift my right leg high enough for the stairs.

By the next day, everything worked pretty much as normal if a little shaky and feeling like it took extra effort.

Tuesday, I called my internist, who verbally rolled her eyes at my not calling 9-1-1 and told me in certain terms that if it ever happened again, I was to get to an ER either by ambulance or my own steam, immediately. I told Scott she said to ignore me if I told him not to call 9-1-1 again.

Today I saw my neurologist for an appointment that was already set up. She says that next time I need to call her asap (and she agreed with my internist that it was ridiculous that I hadn't called 9-1-1).

I think the scariest part was that she was talking about the need to notify the DMV if she thought it was likely that I could have another episode like that and lose control. I rarely drive other than to doctor appointments and occasionally to the pharmacy, but boy I'd hate to lose my license.

She says there's way too many possibilities for what it could have been to know. I'm scheduled for an EEG on Monday to see if it looks abnormal. And I'm scheduled for a lumbar puncture (spinal tap) on June 10, which may or may not help with my diagnosis and/or ruling out multiple sclerosis and several other autoimmune diseases.

Friday, May 22, 2009

Here We Go Again!

Funny how quickly we forget.

I remember now why it was a bad idea to take Prednisone in the evening. My internist wanted me to start on it in an effort to kill the sinus infection I've had for weeks now. It hadn't ever gone away after the cold/flu bug I started in late April, but it flared up with a fever and worsening symptoms this week so I decided it was definitely time to do something about it.

So I'm back on my favorite antibiotic -- Avelox -- and 40 mg per day of Prednisone on a decreasing dose.

I have the shakes back and the jitteriness that Prednisone always gives me. And oh, did it make sleeping last night challenging. I know I was dozing at periods because sometimes the time went faster than it seemed like it had, but I swear I was awake last night more than I was asleep.

But I think the steroids might be helping my joint pain. I'm afraid to jinx it by writing or talking about it, and really, it might just be that my brain is so focused on my sinus infection that it's not processing the joint pain, which will come back in force once I shake the infection. But maybe not. Maybe I'm finally responding to corticosteroids the way I'm supposed to. Wouldn't that be nice? :)

This afternoon I have to go to the hospital's pre-admission clinic to fill out paperwork and get some labs done for my June 4 procedure. Then I go see my OB for my pre-op appointment.

I hope y'all have a lovely long weekend!

Tuesday, May 19, 2009

Good News, To A Point ...

I saw my delight of a hematologist yesterday. (He's pretty awesome -- if you're local to Portland and need a hemonc, go see Dr. Thomas DeLoughery at OHSU.)

The good news is my ferritin levels responded exceedingly well. They bounced up from 26 to 214. The hematologist says that level of response makes it unlikely that I'll need to repeat the infusions, but I'll need to get my levels tested in three to six months and then annually from now on.

The downside? If iron deficiency was causing my fatigue, I should be feeling more energetic by now. And I'm not.


Of course, that might just be because I'm not completely over the flu bug I caught a few weeks ago, and I'm still run down from that.

All I know is I don't feel any better.

Meanwhile, about those weird ganglioside antibodies I tested positive for? The ones none of my other doctors were willing to venture a guess as to their significance? He's referring me to my neurologist for more testing and leaving me in her hands.

I'm feeling fairly frustrated at this point regarding my mystery illness. Yeah, that's an understatement. :)

Looking ahead, I see my internist on Thursday and am considering requesting antibiotics for my sinus infection. (My eosinophil level on my May 11 tests was 10 percent, and I'm guessing that was due to my ongoing infection.) I do my pre-op appointment with my OB on Friday. And I see the neurologist on May 28, who I hope will go ahead and order the tests we discussed last time I saw her.

And that's all the news from here.

Thursday, May 14, 2009

Brandt Disease

"I know we joked about it before, but I'm afraid it might just be true that you have Brandt Disease," my rheumatologist said while examining the weird rash-type thing on my knee.

"Is that a variant of Lupus?" his resident/intern asked.

"Sometimes we just have to admit that we don't know all there is about the human body. There are diseases out there that we haven't yet identified," he explained to her (and me), after I'd reminded her of my last name and that he was referring to a disease named after me.


I'm sorry it's been so long since my last update. I'm still coping with a sinus infection left over from the cold/flu bug I succumbed to two weeks ago. Sigh. I'm not sure if that's the reason I'm feeling as low (or lower) in energy than before the infusions, or if they just haven't kicked in yet.

I went in for my follow-up bloodwork on Monday, and I see the hematologist on May 18 (next Monday) to find out how I did and what he thinks of those ganglioside antibodies that I tested positive for earlier.

Meanwhile, my internist thinks she knows why I've had chronic ferritin deficiencies, and after talking to my OB, I'm scheduled for a D&C and endometrial ablation on June 4. The D&C will remove the three uterine polyps found on a sonohysterogram in March, and the ablation will essentially remove my endometrial lining to my uterus. Without the ablation, the OB says the polyps will almost certainly return within a couple years. And since we long ago decided the chronic back pain from my 2006 car accident (which may or may not have been responsible for the miscarriage I had two days later) meant the end of our hope of having a second child, the fact that the ablation makes it dangerous if not impossible to have more kids is not a problem.

I was actually scheduled to have this procedure back in March 2007. It got postponed originally because I came down with pneumonia. It was rescheduled for June 2007 and rescheduled again because of my second case of pneumonia. And I canceled it from my hospital bed in July 2007, when it became apparent I wasn't going to be healthy enough in the immediate future.

There's a small part of me that keeps thinking that this is the cause of my medical mystery since this was when my body started acting wonky. I've been assured by multiple docs that it's just not possible that it could be responsible for my wide variety of symptoms, but I'm not sure I'll completely believe that until it's done.