Friday, July 27, 2007

under currents

I saw the godlike neurolgist yesterday. Actually, she was almost human. Maybe it just takes her a long time to warm up. I've been seeing her for a year. My old neurologist in Philly was a great guy. I always looked forward to seeing him, because we would discuss politics and books. However, he apparently misdiagnosed me for like 8 years, which puts our relationship in a whole new light. I sometimes consider writing or calling him, but I know he is very busy and I don't want him to think I'm thinking of suing, or something...Still, I wonder about how and why. Medicine isn't really an exact science, and even really smart people make mistakes.

So, the San Diego neuro is about as much fun as sorting socks. But she's considered the best MS md on the west coast, and I am lucky she is here and took me. Being grateful is not my best role, and she is more than a little weird. Yesterday, we compared notes on how incredibly stupid administrators can be. In particular, how "negative" comments and questions can get you in heaps of trouble. So, we actually commiserated a little. It was nice, because I felt like she was accepting my intelligence as being equal to hers. I often feel like I have to prove my intelligence to doctors. I think they often end up thinking patients are kind of dumb.

I also always have to go through this thing about my pain tolerance. I have a very high tolerance for pain. This may seem like a good thing, offhand. However, it means I can not notice something is wrong until it's really pretty bad. Little things, like a new pair of shoes being markedly uncomfortable and I take them off after four hours to discover I left the cardboard shape holder things inside one of them. When I am in pain, I keep going. I walked to the ER when I was in labor before birthing my daughter. It took like 2 hours to convince them to wake up a resident to examine me. At that point, I was 9 cm dilated. A nurse told me most women are screaming by then. I just wanted to keep walking, because my back hurt laying down. You know they made me lay down.

Anyhoo, this scenario gets repeated endlessly: I see a doc that I don't know well. I complain about discomfort. They disregard it. A week later, something major is clearly wrong. (My old neuro used to always tell his students how I complained of discomfort after I had a stroke in my spinal column. "Beware stoics," he said.) I feel like I have to "break in" new doctors. Somewhere here, I'm trying to say that maybe I have broken in the new neuro a little.

Her big news is that Copaxone is now approved to go unrefrigerated for up to 30 days. Woohoo! Traveling just became ten times easier. Here it is, official. You see how trusting I am not--I double checked. She told me she found out Wed. (7/25/07) It was announced 6/6/07. I really thought Copaxone should have sent something out--they love sending me mail. This information was so useful, I can't believe they didn't share it. Well, it will make the trip next week a lot easier. Would have made the trip in June easier, but I can forgive them. Just think of the space this gives us in the fridge!

Anyway, she thought I was doing pretty good. Keep up the Copaxone and physical therapy. I asked her if she could recommend an internist with some experience with MS. I told her about my most recent experiences, waiting ten weeks for an appointment with my new primary care. She said the business with seeing inexperenced mds is part and parcel of managed care. She wanted me to go back to the baby docs and get a GI referral. I am going to try to wait it out and just go to the new primary care when I get back from my nephew's wedding. At least, that's my plan right now.

Tuesday, July 24, 2007

A very wiggley line

Notes for Thursday neuro visit

I don't know what to ask that woman. She "doesn't deal with symptoms." I do nothing but deal with symptoms. And try to find the line between normal and MS. As noted, a very wiggley line

Symptons today:

Lots of fatigue--falling asleep, wanting to lay down

Week in the knees--literally sinking. Seems to be getting worse

On-going stomach problems since 5/1/07--repeated diarrhea, loose bowels, frequent episodes--every few days. Some fecal urgency.

Awaiting appointment with new internist--young doctor recommended follow up in 2 weeks. 6 weeks to get appointment. Non-neuro doctors seem to always wonder if problems are from MS. I don't know how I'm supposed to know. Except to wait, and see if it gets worse.

Lots of spasms and cramps in the right foot. Still some soreness in the area of the wound from February, but actually, I am never telling a doctor that! I just barely escaped the scalpel.

Bruised ribs in fall on 5/27. Set off neuralgia, the tightness around the diaphragm and pain in mid-back.

Back aches a lot. Neck is stiff, mid-back is all pins and needles and ouch, sciatica has started up again.

I know the key thing with a lot of this is to keep moving. But by the time I finish my morning PT (physical torture I mean therapy) exercises I am exhausted and weak in the knees. Which is where we started today.

Expanded disability status scale:

I think I get a 4.0. Would be great if that were a GPA, instead of "Fully ambulatory without aid, self-sufficient, up and about some 12 hours a day despite relatively severe disability; able to walk without aid or rest some 500 meters." How long is 500 meters? 546.806649 yards. I'm not sure if I can walk that...

* pyramidal
* cerebellar
* brainstem
* sensory
* bowel and bladder
* visual
* cerebral
* other

Sunday, July 22, 2007

The lonely patient : how we experience illness []

The lonely patient : how we experience illness []

Yeah, I figured out how to make the BlogThis button for Blogger work again. These small victories keep me going. This book just floated into my libe from the outside world. I haven't started it, but I'm going to give it a looksee.

It being Sunday, this morning I "did the meds." That means arranging eleven pill prescriptions in my 28-compartment pill organizer. There's also four supplements, all doctor suggested. Plus three inhalers, and one injectable medication. (I always try to say that in sepulchral tones.) In the course of filling my compartments, I see if I need any refills. I also fill up the pillbox in my purse where I keep my 3:00 pm pills. There's only two medications I have to take four times a day, thank goodness. Most of the others are once a day. When I had to titre down on Prednisone after I got out of the hospital most recently, I was on four more meds, and they added another two times a day. I had to keep it all down in writing and mark off each time I took a dose--it was so complicated! Imagine doing this with some cognitive deficits. Wait, which of these drugs has that side effect???

I'm supposed to be thankful for these drugs. They make my life doable, and so much better than it would be. I shouldn't feel like a prisoner, a junkie, an addict.

Wretched wigginess

Well, this isn't going well! I haven't even managed to get down the part from April where I had the adverse reaction to the asthma medication, which led to sleep deprivation, which led to a psychotic episode. It really did have Keystone Kops/Marx Brothers qualities. I should try to get it down. The worst of it has been that now I have been crazy, my judgment is ever suspect. I feel like I don't even know that person--I can only remember a little of it. I never realized how damning it could be. I want to shout from the rooftop that I have MS, not insanity. But a lot of MS does make me crazy.

I sometimes refer to it as the Gaslight disease, after the Ingrid Bergman movie. You see, often my knees feel like the are going to buckle. They even do buckle sometimes. But more often, I feel weak in the knees. There is nothing mechanically wrong with my knees. It's just MS. I am very light sensitive. I can barely stand lamps at all. Headlights are ever an issue--I get a headache every time I drive at night. There is nothing wrong with my eyes--no physical reason for the light sensitivity. Just MS. Tere are phantom itches--like shingles or poison ivy--worse with fatigue. The skin is smooth, white, unbroken, without hives.

Crazy twitches in my feet and toes. My right "index" toe curls and uncurls independent of my other toes, whenever it wants. It's wiggy. I can't even do that--I move my toes and they all move. Grr.

Saturday, July 14, 2007

Where were we?

OK, back in the spring, when my foot wasn't healing and I was playing MS/MD roulette. That's kind of the drill: one doctor isn't sure what to do, so they send you to another doctor, then another, and your head never stops spinning as each one prescribes another two/three meds. And you start having reactions, but you can't tell what reaction is due to what drug, or is it just the MS? B b buh bluh bluooie.

MS Activist blog

I'm an MS Activist

I'm not an MS Activist (and I HATE the new MS Society logo, but maybe I'll give it a read sometime.

Thursday, July 12, 2007

Pity party part oneteenth

OK, I decided to start this blog because I do have this disease, multiple sclerosis. I have other blogs, but stuff about the disease had a way of coloring what I was doing over there, and I didn't want that. Plus I do need to keep track of stuff, like what medications, which doctors, when symptoms. It is distressingly complex. One of the many things about it that are bummers.

Here's a brief history since February,which I am noting here because I am already forgetting/confusing stuff. On 2/2, I discovered a wound on my foot that appeared infected. I daubed triple antibiotic ointment on it and expected it to go away. Shortly thereafter, I developed a bad cold. The cold set off asthma.

I should mention that I have a rich and varied medical history--the kind residents ooh and ah over. You do not want that! Some day I will post on the evils of baby doctors.

OK, the foot does not heal or clear up. I go to the doctor. (Another long post will be about the want-not want to go to a doctor dance.) The doctor looks quite hard at the foot. It does not help that I do not know what caused the original injury. The doctor hears me cough and says, "What's that?" More poking and listening. I have a sinus infection. The doctor prescribes oral antibiotics, and two inhalers for the asthma. The foot doesn not heal up. I must see an orthopedic specialist. She also wants me to see a pulmonologist.

Xray. MRI. Orthopod sends me to see a wound specialist. Wound specialist says surgery.