(I really need to update about my follow-up and other stuff. But for tonight I'm just going to post this.)
Symptoms/Timeline
2002 (12 years of age):
Weight loss, Extreme fatigue, Insomnia
2003 - 2007 (13-17 years of age):
Blue feet and hands (Raynaud’s), Fatigue, Dry eye begins, Rash after showering, sometimes after being in the sun, Intestinal troubles begin, Insomnia
2007:
Develops small red spots (like tiny broken capillaries) on arms, look like tiny freckles but they bleed.
Raynauds becomes more severe – begins to have toenail issues
Develops a shaking/tremor in her arms/hands especially when inflamed or under stress.
February 2008:
Thumb on left hand began to hurt. By mid-February thumb causing extreme pain and swelling in “flare ups” came and went. Insomnia more pronounced because of waking up during the night in pain.
Develops night sweats.
March 2008:
Left hand gets progressively worse, involving all the other fingers of the hand, loses ability to use the hand because of pain, swelling, inflammation. Worse in the morning, somewhat better in afternoon.
Right hand begins to hurt. Raynauds is extremely severe. Begins to lose toe nail on right foot.
Shaking/tremor is more frequent and more pronounced.
Sees PCM, has initial blood work, referred to Ped. Rheum.
April 2008:
Begins to develop hip pain.
See Rheum. ANA, CCP, RF, and antithyroid peroxidase are abnormal. Put on Mobic 7.5 twice per day. Referred to Endo for thyroid, Opthomology for dry eye.
May 2008-Aug 2008:
Seen by Endocrinologist, put on Synthroid.
Pain levels are increasing. Severe flare ups each month. Referred to Cardiology for chest pains and shortness of breath. Diagnosed with ectopic palpitations, innocent heart murmur, and possible rheum. inflammation of the chest.
Losses ability to hold small object, open jars/bottles, brush teeth. Pain and inflammation cycle – good days and bad days.
August 2008:
See Rheum. again. He adds a diagnosis of Fibromyalgia. Prescribes Flexeril at night for the Fibro, Plaquenil daily for the rheum issue.
Develops pain in right jaw.
Right toenail continues to worse, left toenail develops black pits/holes (due to the Raynauds?)
Referred to Gastro for intestinal issues.
September 2008:
Late August/Early September brought a severe flare up which lasted more than 6 weeks. Pain and inflamation levels were high and constant.
Mom notices a rash or “blush” on Alyssa’s face. Cheeks, nose, and part of forehead red. Rash/blush seems to come and go, some days none at all, some days very evident.
Symptoms as follows:
Raynaud’s (blue feet and occasionally hands)
Fatigue
Dry eye
Pain and swelling in hands
Pain in jaw
Pain in hip
Pain in feet (occasionally)
Rash after shower
Capillary rash
Insomnia
Intestinal
Dizziness
Shaking/tremor
Night sweats
Some back (kidney?) pain
Rash/redness on face
Wednesday, November 19, 2008
Friday, October 24, 2008
My New Rheumatologist
Today I had the long awaited appointment with my new Rheumatologist.
It went well. I mean "well" as in I like my new doctor much better than the old one. He was ready for us as soon as we were checked in. We had made another list and timeline of my symptoms, but he had me tell everything to him rather than just read it. I did pretty well speaking up and talking without Mom. (She was with me, of course.) Anyway, we discussed a lot of things for a while and he took good notes. Near the end of the appointment he did a physical check.
During the appointment, as I talked about being diagnosed with Fibromyalgia, he sort of looked at me funny and went, "Hmmm." After asking exactly what my old doctor had done and said, and listening to the rest of the story, he told me that he is hesitant to agree with my other Rheumatologist's diagnosis. Apparently the pressure-point test he did was outdated, and really doesn't work. Rather, it does work, but it works on normal people as well as Fibromyalgia patients. Furthermore, some of my symptoms point away from Fibromyalgia and more towards Rheumatoid Arthritis (or something else all together).
My doctor was also sort of confused as to why my first doctor had me taking Plaquenil. (Which, according to my eye doctor and stomach doctor, can hurt the eyes and gut.) Because we don't know what is going on, we don't know what we're treating with Plaquenil, so it doesn't make sense. He recommended that I stop taking it, because it might help if I end up being diagnosed with Sjögren’s Syndrome or Rheumatoid Arthritis, but it won't do anything for Fibromyalgia or other conditions. Mom and I thought it was probably good to stop taking it, because frankly the if I can get by without a medication I really don't need the unnecessary pills on top of the handful I am required to take daily.
The doctor was really, really considerate and good at listening and explaining. He threw out a few possibilities, but really we're starting all over at step one again. It could be that my thyroid is to blame. When my old doctor talked about that, it made me really frustrated and mad because my thyroid isn't out of control. But my new doctor explained that Raynaud's Syndrome (blue hands and feet) can be caused by the thyroid, and other joint pains can come into it too. Because he actually explained the reasons to throw that out as a possibility, it didn't bother me so much. Also, it's possible that my symptoms are something seasonal, and that in a couple of years they'll melt away. Or I could have Sjögren’s. or I could have Rheumatoid Arthritis, or Lupus, or whatever. His point was that we really can't say, and he doesn't want to label me with something and then have it be the wrong thing. Which is exactly what I want to hear.
He really seems committed to the Mystery Diagnoses factor--meaning he's willing to work with me until we come to some sort of conclusion. He ordered a ton of bloodwork, and a lot of x-rays (vs. the three x-rays my old doctor did--which we aren't even sure he looked at). We're supposed to call him on Monday and schedule a follow up in three to four weeks (vs. sometime in six months that my old doctor felt like I should be seen).
Anyway, it was overall very encouraging.
Except they did take a ton of blood. By the time I got out of radiology, I was beat. I've just gotten home (four hours after we left the hospital) and basically just had enough energy to climb into PJs and curl up on the couch.
I have an appointment with my normal doctor on Wednesday for some minor things.
I did find this pretty cool little symptom checker last night, which is oddly fun to play with.
If I say, 'I will forget my complaint, I will change my expression, and smile,' I still dread all my sufferings...
Job 9:27-28
It went well. I mean "well" as in I like my new doctor much better than the old one. He was ready for us as soon as we were checked in. We had made another list and timeline of my symptoms, but he had me tell everything to him rather than just read it. I did pretty well speaking up and talking without Mom. (She was with me, of course.) Anyway, we discussed a lot of things for a while and he took good notes. Near the end of the appointment he did a physical check.
During the appointment, as I talked about being diagnosed with Fibromyalgia, he sort of looked at me funny and went, "Hmmm." After asking exactly what my old doctor had done and said, and listening to the rest of the story, he told me that he is hesitant to agree with my other Rheumatologist's diagnosis. Apparently the pressure-point test he did was outdated, and really doesn't work. Rather, it does work, but it works on normal people as well as Fibromyalgia patients. Furthermore, some of my symptoms point away from Fibromyalgia and more towards Rheumatoid Arthritis (or something else all together).
My doctor was also sort of confused as to why my first doctor had me taking Plaquenil. (Which, according to my eye doctor and stomach doctor, can hurt the eyes and gut.) Because we don't know what is going on, we don't know what we're treating with Plaquenil, so it doesn't make sense. He recommended that I stop taking it, because it might help if I end up being diagnosed with Sjögren’s Syndrome or Rheumatoid Arthritis, but it won't do anything for Fibromyalgia or other conditions. Mom and I thought it was probably good to stop taking it, because frankly the if I can get by without a medication I really don't need the unnecessary pills on top of the handful I am required to take daily.
The doctor was really, really considerate and good at listening and explaining. He threw out a few possibilities, but really we're starting all over at step one again. It could be that my thyroid is to blame. When my old doctor talked about that, it made me really frustrated and mad because my thyroid isn't out of control. But my new doctor explained that Raynaud's Syndrome (blue hands and feet) can be caused by the thyroid, and other joint pains can come into it too. Because he actually explained the reasons to throw that out as a possibility, it didn't bother me so much. Also, it's possible that my symptoms are something seasonal, and that in a couple of years they'll melt away. Or I could have Sjögren’s. or I could have Rheumatoid Arthritis, or Lupus, or whatever. His point was that we really can't say, and he doesn't want to label me with something and then have it be the wrong thing. Which is exactly what I want to hear.
He really seems committed to the Mystery Diagnoses factor--meaning he's willing to work with me until we come to some sort of conclusion. He ordered a ton of bloodwork, and a lot of x-rays (vs. the three x-rays my old doctor did--which we aren't even sure he looked at). We're supposed to call him on Monday and schedule a follow up in three to four weeks (vs. sometime in six months that my old doctor felt like I should be seen).
Anyway, it was overall very encouraging.
Except they did take a ton of blood. By the time I got out of radiology, I was beat. I've just gotten home (four hours after we left the hospital) and basically just had enough energy to climb into PJs and curl up on the couch.
I have an appointment with my normal doctor on Wednesday for some minor things.
I did find this pretty cool little symptom checker last night, which is oddly fun to play with.
If I say, 'I will forget my complaint, I will change my expression, and smile,' I still dread all my sufferings...
Job 9:27-28
Tuesday, October 21, 2008
Follow-Ups and Referral
Yesterday I had a follow-up appointment with my tummy doctor. It turns out that whatever is going on in the tummy area is more serious than he thought at first. After some discussion, I decided to opt with another couple of weeks with natural treatments instead of jumping into some uncomfortable testing. I have several vitamins and other health pills to take (on top of the medication I'm already on--not that these will hurt, because it's really just fiber and other natural things, it's just a hassle). I'm supposed to try these new pills for a couple of weeks, and then we'll go from there.
I saw my eye doctor on the same day. Everything appears to be going fine, with no damage to my cornea despite dry eye and the autoimmune medicine I'm taking (which apparently can harm your eyes, in rare cases). We mentioned that we were waiting to get a referral to see the Rheumatologist. (Now that I'm eighteen, I can be seen by the one that's local.) My doctor was like, "Oh, I'll just put that in for you." We were like, "Wow, thanks!"
So I have an appointment with Rheumatology on Friday. It's sort of sad how easy that was.
I also have an appointment with my normal doctor sometime soon, but I've forgotten when.
I saw my eye doctor on the same day. Everything appears to be going fine, with no damage to my cornea despite dry eye and the autoimmune medicine I'm taking (which apparently can harm your eyes, in rare cases). We mentioned that we were waiting to get a referral to see the Rheumatologist. (Now that I'm eighteen, I can be seen by the one that's local.) My doctor was like, "Oh, I'll just put that in for you." We were like, "Wow, thanks!"
So I have an appointment with Rheumatology on Friday. It's sort of sad how easy that was.
I also have an appointment with my normal doctor sometime soon, but I've forgotten when.
Thursday, September 25, 2008
The Butterfly Rash
I've started noticing that I feel really hot sometimes--when embarrassed, and at random. I assumed I would just flush for no reason. But a few weeks ago I got upset about something, and my mom remarked that I was too red. (Getting red in response to emotion happens to me a lot.)
Finally, today in Spanish I had to answer a few questions. I wasn't confident, and could feel myself blushing again. When I got home, I was washing my hands and happened to look in the mirror. The traces of the blush were still there (several hours later).
Then I noticed the shape of the blush. I recognized the Butterfly Flush/Rash.
This rash is a clear symptom of Lupus. Now that I can see it, I've realized I've had it for a while--when I put on foundation, I often note the edges of it, which are the reddest.
So... looks like I have Lupus.
Finally, today in Spanish I had to answer a few questions. I wasn't confident, and could feel myself blushing again. When I got home, I was washing my hands and happened to look in the mirror. The traces of the blush were still there (several hours later).
Then I noticed the shape of the blush. I recognized the Butterfly Flush/Rash.
This rash is a clear symptom of Lupus. Now that I can see it, I've realized I've had it for a while--when I put on foundation, I often note the edges of it, which are the reddest.
So... looks like I have Lupus.
Wednesday, September 24, 2008
Tummy Doctor
(Sept. 2)
I saw the tummy doctor a few days ago and have more medicine to take. Apparently whatever autoimmune attack started my thyroid and Rheumatoid issues has effected my stomach region, and the doctor wants to check me out, make sure there wasn't permanent damage and whatnot. It's sort of interesting that I've told numerous doctors about my stomach problems, and my thyroid doctor was the first to actually recommend me to a tummy doctor, and now he's one of my regulars.
I saw the tummy doctor a few days ago and have more medicine to take. Apparently whatever autoimmune attack started my thyroid and Rheumatoid issues has effected my stomach region, and the doctor wants to check me out, make sure there wasn't permanent damage and whatnot. It's sort of interesting that I've told numerous doctors about my stomach problems, and my thyroid doctor was the first to actually recommend me to a tummy doctor, and now he's one of my regulars.
Monday, September 22, 2008
In Which I Add Another Doctor To the List
(August 18, 2008)
Today I saw Dr. C, my thyroid doctor. She was very sympathetic about my Saga Of Finding A Good Rheumatologist. While she was going through the checklist of things to ask me, I told her about my constant nausea in the mornings. (I quit trying to eat breakfast years and years ago, because it made me sick feeling and miserable. I can still manage to eat before eleven o'clock if I need to (i.e. at camp or before an important test) but most of the times that is Not A Good Idea.) I think I've told this to several of my doctors, but this time she stopped and frowned at me. I've now been recommended to see a tummy doctor next week. That's--what?--5 doctors now? Rheumatologist, heart doctor, thyroid doctor, normal doctor, eye doctor, tummy doctor. Six doctors! Score! Erm... or something.
Otherwise the appointment went fine, and everything seems to be okay from the thyroid point of view.
Today I saw Dr. C, my thyroid doctor. She was very sympathetic about my Saga Of Finding A Good Rheumatologist. While she was going through the checklist of things to ask me, I told her about my constant nausea in the mornings. (I quit trying to eat breakfast years and years ago, because it made me sick feeling and miserable. I can still manage to eat before eleven o'clock if I need to (i.e. at camp or before an important test) but most of the times that is Not A Good Idea.) I think I've told this to several of my doctors, but this time she stopped and frowned at me. I've now been recommended to see a tummy doctor next week. That's--what?--5 doctors now? Rheumatologist, heart doctor, thyroid doctor, normal doctor, eye doctor, tummy doctor. Six doctors! Score! Erm... or something.
Otherwise the appointment went fine, and everything seems to be okay from the thyroid point of view.
Friday, September 19, 2008
in which one side of my heart throws a party and the other side watches with disgust
(August 4)
I saw the heart doctor today. May I say it is amazing that they can look at a bunch of numbers and tell me right off what's going on? Apparently my heart monitor would alert the doctor even when I hadn't pressed anything, just if something weird was going on. So actually she did catch one of my palpations--just not one I felt.
Apparently my palpations are perfectly normal. What happens (as I understand it) is that the side of my heart which keeps the beat is on the top-left. However, from time to time the top-right of my heart decides to throw a party and speeds up, taking over the thump-thump. Then that side gets sick of the party and throws responsibility back on the other side. And life goes on. Nothing harmful or dangerous about it.
We also talked about my chest pains (which have gotten so bad at times that I've almost cried). When I have an "attack," it feels like my ribs are squeezing in and digging into my lungs very slowly. The worst it got was when it had been aching badly most of the day and I ran across the street. When I got to the other side, I couldn't breathe and was in a lot of pain. My doctor says this isn't related to my heart, though. She thinks it could be that I have Fibromyalgia or arthritis in my ribs, so that it hurts for my ribs to move when I breathe deeply. She thinks that the new medication I'm on will help.
She also told me some of the signs that I should be looking for, and encouraged me to call her if anything comes up.
So that's covered and over, for now at least.
I saw the heart doctor today. May I say it is amazing that they can look at a bunch of numbers and tell me right off what's going on? Apparently my heart monitor would alert the doctor even when I hadn't pressed anything, just if something weird was going on. So actually she did catch one of my palpations--just not one I felt.
Apparently my palpations are perfectly normal. What happens (as I understand it) is that the side of my heart which keeps the beat is on the top-left. However, from time to time the top-right of my heart decides to throw a party and speeds up, taking over the thump-thump. Then that side gets sick of the party and throws responsibility back on the other side. And life goes on. Nothing harmful or dangerous about it.
We also talked about my chest pains (which have gotten so bad at times that I've almost cried). When I have an "attack," it feels like my ribs are squeezing in and digging into my lungs very slowly. The worst it got was when it had been aching badly most of the day and I ran across the street. When I got to the other side, I couldn't breathe and was in a lot of pain. My doctor says this isn't related to my heart, though. She thinks it could be that I have Fibromyalgia or arthritis in my ribs, so that it hurts for my ribs to move when I breathe deeply. She thinks that the new medication I'm on will help.
She also told me some of the signs that I should be looking for, and encouraged me to call her if anything comes up.
So that's covered and over, for now at least.
Thursday, September 18, 2008
A Fellow Named Fibromyalgia
(August 1)
Today I went to my old Rheumatologist. He will still see me, and goes as far to as to say he's willing to keep seeing me until I'm twenty one or something like that (we're going to switch to the adult one though). Why the other doctor can't do this, I don't know. Oh well.
Anyway. I was seen by a student doctor first, and I liked her much better than my last one. She was thorough, interested and listened to everything I had to say. We also joked a bit. It was much easier to say everything I wanted to when I wasn't being interrupted or stared at. She then got the main doctor, and he brought in a hoard of other student doctors to sit in on the rest of the appointment (which feels very awkward). It was sort of the same story as last time--he asked me a few questions and cut me off before I'd answered them completely. Oh well. My student doctor cut in once to correct him, which made me like her even more.
After talking for a few minutes, he had me stand up and started feeling different points on my neck, arms, legs and hips. These are pressure points, apparently, and some of them were very painful when he squeezed. The result of this test is that he has decided I have Fibromyalgia.
He has prescribed muscle relaxants to take in the evening, so I can sleep without my hip hurting. He also prescribed medication that should slow down the rate my antibodies attack/eat me. I've also been told that I need to start exercising for a half hour to two hours everyday, or my muscles might start to freeze up. It's as important to my body to exercise as it is for a diabetic to take insulin.
There is something else Rheumatoid-ish going on. While my doctor was rattling off about my only issues being thyroid (which really isn't that bad--mine's much less than my mom's or older sister's) and Fibromyalgia the nurse interrupted and reminded him about my high Rheumatoid factor. (Fibromyalgia isn't Rheumatoid, btw. It's pressure points...or something. It's confusing.) Anyway. So then he back tracked and prescribed some medicine I've been taking to help fight whatever Rheumatoid thing is going on.
Today I went to my old Rheumatologist. He will still see me, and goes as far to as to say he's willing to keep seeing me until I'm twenty one or something like that (we're going to switch to the adult one though). Why the other doctor can't do this, I don't know. Oh well.
Anyway. I was seen by a student doctor first, and I liked her much better than my last one. She was thorough, interested and listened to everything I had to say. We also joked a bit. It was much easier to say everything I wanted to when I wasn't being interrupted or stared at. She then got the main doctor, and he brought in a hoard of other student doctors to sit in on the rest of the appointment (which feels very awkward). It was sort of the same story as last time--he asked me a few questions and cut me off before I'd answered them completely. Oh well. My student doctor cut in once to correct him, which made me like her even more.
After talking for a few minutes, he had me stand up and started feeling different points on my neck, arms, legs and hips. These are pressure points, apparently, and some of them were very painful when he squeezed. The result of this test is that he has decided I have Fibromyalgia.
Fibromyalgia
Fibromyalgia, also called muscular rheumatism, is when you are in a constant state of pain, stiffness and aching. It is not a form of arthritis, and will not cause deformities or permanent crippling (thank goodness!). Some symptoms (the ones I have) are pain (particularly in trigger points), fatigue, Raynauds Phenomenon (the Dead Feet that I have), dizziness, tingling and numbness, and abdominal issues.
He has prescribed muscle relaxants to take in the evening, so I can sleep without my hip hurting. He also prescribed medication that should slow down the rate my antibodies attack/eat me. I've also been told that I need to start exercising for a half hour to two hours everyday, or my muscles might start to freeze up. It's as important to my body to exercise as it is for a diabetic to take insulin.
There is something else Rheumatoid-ish going on. While my doctor was rattling off about my only issues being thyroid (which really isn't that bad--mine's much less than my mom's or older sister's) and Fibromyalgia the nurse interrupted and reminded him about my high Rheumatoid factor. (Fibromyalgia isn't Rheumatoid, btw. It's pressure points...or something. It's confusing.) Anyway. So then he back tracked and prescribed some medicine I've been taking to help fight whatever Rheumatoid thing is going on.
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