Monday, September 27, 2010

More Unfortunate News

I hate to just use my blog to vent about difficult things going on in my life, this year is just turning out to be a year of difficult things.

Last Saturday night while I was out with friends I suddenly developed a strange rash on my legs. It started as red spots all over that didn't itch or have any strange sensation or texture. They came on quickly and were nothing I recognized so I went to the ER. While at the ER my legs swelled up and the spots became raised and started to burn. The ER doctor (while shrugging his shoulders and looking bewildered) told me that it was probably an allergic reaction to detergent or new jeans. He told me that I needed to follow up with my GP on Monday morning, so thats what I did.

My GP at first thought it could be an allergic reaction but also said it could be a condition that can affect the kidneys. (Um, okay, way to drop that one in there Mr. GP!) He had me pee in a cup and told me to come in one day during the week to have blood drawn. So I did. Fast forward to Thursday, bumps are still there and the GP calls to tell me the urine and blood samples were both normal. Cool, but why do I still have bumps?

Then Thursday night things got a bit more tricky. First of all at night the tingling sensation on my legs got so bad I was unable to sleep for the entire night. Also, my ankles swelled up and became very painful. Jason got home that night so first thing Friday we called the doctor and scheduled another appointment. When I got in he had me pee in a cup again, said there was no protein in my urine but thought this was a condition called (insert gibberish here) and it usually clears up on its own. He then said if I wanted he could check me into the hospital because they could run more tests than he was able to OR go home and wait it out.

Clearly I chose the former of the options. So off we headed to the hospital. When I checked in at 4 I noticed that my right hand had started to swell, it actually looked as if I had broken my hand but I obviously hadn't injured it at all. I saw a couple doctors over the course of the night, first was a first year resident, then a rheumatologist who just happened to be assigned to the Emergency Assessment Unit I was admitted into. I'd been told by the nurses that he found my case fascinating, but I will hand it to him that he didn't geek out on me during our consultation.

Both of these doctors said it was most likely a condition called Henoch–Schönlein Purpura, or HSP for short. They told me that its a complicated condition to explain because not much is known about it but basically its an inflammation of the capillaries that is caused by an autoimmune reaction to certain otherwise normal viral infections. These spots on my legs are basically where capillaries have become irritated and burst. They also explained that in many cases it can affect the kidneys and the bowels, which is why they had me pee in many cups and took several vials of blood to send off for testing. They reassured me that they were monitoring my kidney function closely and my kidneys were functioning perfectly normal.

At first they said there was a possibility I could go home that night and come back in the morning to meet with the consultant since there wasn't anything they could do to treat me, then as it approached midnight the joint swelling started to get increasingly worse. Both of my ankles were so swollen I could hardly walk, both of my hands had swelled by this point and the right hand resembled a latex glove that had been blown up, also my elbows and right knee joined the club. After this sudden swelling the night shift doctor broke the news that she wanted me to stay overnight so they could keep an eye on my symptoms and by that point I agreed that it was probably the best thing. So despite having another miserable sleepless night, made worse by staying overnight in a hospital room I shared with 4 other women, I did have the peace of mind that if something scary happened I was in the right place.

Nevertheless, the night was hellish. Again the itching and tingling flared up during the night and made it impossible to sleep. In the morning the consultant finally came and did his rounds with the the other doctors and let me know that after watching me overnight they were quite certain this was a case of HSP, that there was no treatment for it short of steroid injections and I just needed to keep the skin moisturized and take ibuprofen for the swelling. They also said they would send me home after the rheumatologist came back in just to make sure he was on board with all their recommendations. He decided against steroids because he said it would make it very difficult to evaluate the condition and be sure to rule out any other factors. Also the steroids could make me even sicker. They told me that once all the blood tests came back (one takes 10 days) an appointment would be arranged for me to meet with the rheumatologist at which point he'd consult with me further and also do an ultrasound of my kidneys to keep checking that they aren't being effected.

So they sent me home and I've now been home for two nights.

Last night I didn't sleep much again. During the day I have very little itching and the spots seem to be flat and soft, then around 9-10 at night my legs become hard, a new crop of spots flares up and the old ones become raised and irritated. This has been a nightly occurrence for the past four nights now. The only good news is that the joint swelling has gone done almost completely.

Last night I actually felt like the itching sensation was going to drive me insane, luckily tonight was a bit better. Before bed Jason pressed a bag of frozen peas all over my legs which really helped relieve the itching and I also took a cool oatmeal bath to sooth the itching a bit. The relief was short lived and I've only had little spells of sleep tonight but the pre-bed routine seemed to dial down the itching a bit and I just kept getting up to press ice packs or cold towels all over my legs. Right now its 7am and I'm just waiting for this flare up to end so I can catch a few hours of sleep.

So I guess this could be my daily/nightly routine for a couple more weeks. HSP usually lasts about a month and clears up within 6 weeks. I should count myself lucky that this doesn't seem to be attacking my kidneys or bowels, but its difficult to count yourself lucky when you can't sleep during the night and are suffering with itching sensations that nearly drive you insane. I just have to hope this passes as quickly as possible and that maybe toward the last couple weeks of this the symptoms will become milder. Here's hoping and praying the end of this is near.

If you're interested, here is a good overview of HSP: