Aa
Latest rheumatologist visit
Hello. I just got back from the rheumatologist follow up appt. He seemed baffled, and said to try physical therapy & weight loss. Here are my labs:
ANA = 1:160, speckled and homogeneous (after 3 tests over 4 years holding steady at 1:80 speckled, including most recently in January, before this test in late Feb)
CPK = 74
CRP = 0.6
TSH = 0.82
Vit D = 20 (up from 8 in January) (all other vitamin, mineral, electrolyte levels were normal: Mg, Ca, K, Na, B12)
ESR sed rate = 14 mm/hr
Rheumatoid factor <20
Complement C3 = 172
Complement C4 = 43
HLA B-27 not present
CCP IgG = 7
SS-A antibody = 16 u/ml
SS-B antibody = 35 u/ml
Protein electrophoresis, serum = 7.2 g/dl
Albumin = 4.1g/dl
Globulin = 3.1g/dl
Alpha-1 = 0.3
Alpha-2 = 0.8
Beta = 0.9
Gamma = 1.0
-- no monoclonal protein seen
DNA ds antibody = 0
Gliadin ab, IgG = 2.2 u/ml
Gliadin ab IgA = 4.6 u/ml
TTG IgG = 1.2 u/ml
TTG IgA = 0.7 u/ml
Anticardiolipin IgG = <7; IgA = <7; IgM = <7
Smith antibody = 9u/ml
RNP antibody = 12u/ml
Sleep study was normal = no evidence of apnea or restless legs/PLMD. Only abnormality was amount of REM sleep, which was abnormally low and I didn't even reach REM sleep at all until I had slept 375 minutes. (No wonder I don't feel rested?!)
So, in the time between this visit and previous visit, he had tried me on Lyrica & I reacted to it within 2 weeks (heart palp and breathing difficulty) and then on cymbalta & I spent Saturday night in hospital with serotonin syndrome after increasing dose from 30 - 60mg. The fibro pain is already returning & my last dose of cymbalta was on Friday. The dr put me on disability leave...he wanted to do 90 days but I am a teacher & that would mean missing the entire rest of school year, which I didn't want to do, so we settled on 6 weeks. I am not sure what else to do, and he wasn't sure what to make of the increase in ANA without other positive labs. He has put in for a bone scan to look for bone inflammation.
Again...my symptoms are:
Widespread pain (positive at all but 2 fibro tender points), stiffness in joints and muscles, frequent muscle spasms and severe cramps, difficulty swallowing, dizziness/vertigo, hair loss, dry mouth, eyes, & nose, numbness in fingers, toes, side of bottom lip, loss of smell & taste, frequent swollen glands, muscle weakness (sometimes unable to do something as easy as cut food, or stand from a chair), severe fatigue, frequent loss of appetite, brain fog and inability to grade papers or even explain concepts in class. Headaches and migraines, although migraines have lessened since I entered premature menopause when I was 39 (now almost 43).
What else can be going on? Just severe fibro? What about ANA? What about lack of REM sleep?
Any thoughts welcome!
Lisa
ANA = 1:160, speckled and homogeneous (after 3 tests over 4 years holding steady at 1:80 speckled, including most recently in January, before this test in late Feb)
CPK = 74
CRP = 0.6
TSH = 0.82
Vit D = 20 (up from 8 in January) (all other vitamin, mineral, electrolyte levels were normal: Mg, Ca, K, Na, B12)
ESR sed rate = 14 mm/hr
Rheumatoid factor <20
Complement C3 = 172
Complement C4 = 43
HLA B-27 not present
CCP IgG = 7
SS-A antibody = 16 u/ml
SS-B antibody = 35 u/ml
Protein electrophoresis, serum = 7.2 g/dl
Albumin = 4.1g/dl
Globulin = 3.1g/dl
Alpha-1 = 0.3
Alpha-2 = 0.8
Beta = 0.9
Gamma = 1.0
-- no monoclonal protein seen
DNA ds antibody = 0
Gliadin ab, IgG = 2.2 u/ml
Gliadin ab IgA = 4.6 u/ml
TTG IgG = 1.2 u/ml
TTG IgA = 0.7 u/ml
Anticardiolipin IgG = <7; IgA = <7; IgM = <7
Smith antibody = 9u/ml
RNP antibody = 12u/ml
Sleep study was normal = no evidence of apnea or restless legs/PLMD. Only abnormality was amount of REM sleep, which was abnormally low and I didn't even reach REM sleep at all until I had slept 375 minutes. (No wonder I don't feel rested?!)
So, in the time between this visit and previous visit, he had tried me on Lyrica & I reacted to it within 2 weeks (heart palp and breathing difficulty) and then on cymbalta & I spent Saturday night in hospital with serotonin syndrome after increasing dose from 30 - 60mg. The fibro pain is already returning & my last dose of cymbalta was on Friday. The dr put me on disability leave...he wanted to do 90 days but I am a teacher & that would mean missing the entire rest of school year, which I didn't want to do, so we settled on 6 weeks. I am not sure what else to do, and he wasn't sure what to make of the increase in ANA without other positive labs. He has put in for a bone scan to look for bone inflammation.
Again...my symptoms are:
Widespread pain (positive at all but 2 fibro tender points), stiffness in joints and muscles, frequent muscle spasms and severe cramps, difficulty swallowing, dizziness/vertigo, hair loss, dry mouth, eyes, & nose, numbness in fingers, toes, side of bottom lip, loss of smell & taste, frequent swollen glands, muscle weakness (sometimes unable to do something as easy as cut food, or stand from a chair), severe fatigue, frequent loss of appetite, brain fog and inability to grade papers or even explain concepts in class. Headaches and migraines, although migraines have lessened since I entered premature menopause when I was 39 (now almost 43).
What else can be going on? Just severe fibro? What about ANA? What about lack of REM sleep?
Any thoughts welcome!
Lisa
I am glad the post I left last night was helpful to you. I hope you find the answers. It looks like your IGA is lower than the IGG.
Of course, later I wondered if you are taking anything for menopause? I was through menopause at 50 and the female GYN put me on 2 cremes. I use Progesterone 1/8 a teaspoon daily. It is over the counter at Natural Grocer. I was told to use 1/8 a day and rub it in on my upper thighs alternating every night.
I was also told to use an Estrogen creme which is a script, nightly also.(Apply as per directions vaginally) As time has passed I needed more to overcome the dryness and thinning that happens. Between the 2 cremes I feel better all over including mentally.
What did our Grandmothers do? Without these very small doses of hormones I think I would be in big trouble. The GYN told me these doses are so small that it's not enough to worry about it.
Sometimes PBS has specials with Christine Northrup speaking and she is super to see in action. Her book was very informative and full of help about menopause.
Let us know how things go.
Elbamom
Of course, later I wondered if you are taking anything for menopause? I was through menopause at 50 and the female GYN put me on 2 cremes. I use Progesterone 1/8 a teaspoon daily. It is over the counter at Natural Grocer. I was told to use 1/8 a day and rub it in on my upper thighs alternating every night.
I was also told to use an Estrogen creme which is a script, nightly also.(Apply as per directions vaginally) As time has passed I needed more to overcome the dryness and thinning that happens. Between the 2 cremes I feel better all over including mentally.
What did our Grandmothers do? Without these very small doses of hormones I think I would be in big trouble. The GYN told me these doses are so small that it's not enough to worry about it.
Sometimes PBS has specials with Christine Northrup speaking and she is super to see in action. Her book was very informative and full of help about menopause.
Let us know how things go.
Elbamom
Thanks for replying! Yes, I am currently on 7000IU of D3 daily. I've been battling low Vitamin D for years, and didn't realize until this year that I probably just need to stay on the supplement forever. Magnesium levels were at the high end of normal, and calcium was squarely in the middle. I did more digging this evening online, and found that several of my results indicate tissue inflammation/acute inflammatory disease, but the question being WHAT is inflamed and why. I will look into immune deficiency, as well. The Ig number ranges all seem to talk about high levels only.
I am also thinking about going to a neurologist because of the odd numbness/tingling, and what I describe as a feeling of being "short-circuited." We'll see what happens from here.
I am also thinking about going to a neurologist because of the odd numbness/tingling, and what I describe as a feeling of being "short-circuited." We'll see what happens from here.
Hey Lisa:
As a former educator I know how hard it is too miss teaching. I hope you get lots of ideas from the community. I did have some thoughts.
First, I wondered if maybe this is good time to have an immunologist look at your blood work and symptoms. Can your PCP recommend one? If not, contact the Immune Deficiency Foundation (IDF) at www.primaryimmune.org They are very helpful and can recommend an immunologist in your area. They currently know about 150 different types of immune deficiency. They are free and very helpful. Lots of good info on their web site. Look at their publication section for lots more info, on immune deficiencies, testing, support groups, legal rights, etc. Some immune deficiencies can start at any age of life. Most docs. just aren't aware of these areas as they are a specialty all of their own.
Did either the IGG or IGA say they were in the below normal range? If so, you might be looking at CVID= common variable immune deficiency.
This is very well known at the IDF and they have suggestions for treatment. Your IGM, and IGE should also be tested.
I like to get all the info I can about something and it is so frustrating to not know what is wrong, and how to improve your situation. I think you are on the right track, you just need someone to put the pieces of the puzzle together.
This is where I think the community here, an immunologist and the IDF can be very helpful.
Second, looking at your blood work I wondered what type of vitamin D you are taking and how much daily. I hope it is D3 which is easily absorbed in the body and that you are taking 5,000 to 10,000 IU a day. From 8 to 20 ml is good but the optimal level is between 50 and 70 ml. Two D3 blood work checks a year should allow you to make sure you are at the optimal level. Then you can adjust your D3 as needed.
For more info, about D3 go to www.vitamindcouncil.org.
Costco, walmart, walgreens have D3 cheap and over the counter.
To absorb, D3 needs some co-factors like magnesium. Magnesium will also help with the migraines. Was the blood work at normal level for magnesium at the low end or mid-range? Maybe a magnesium supplement would be helpful too. More about magnesium and migraines from a post Red_Star gave to another person. Many people are low in magnesium, and vitamin D3.
Third, is it possible to have your vaccine levels rechecked? I know how nasty and germy schools can be. My family had their vaccines levels rechecked and some of us were re vaccinated with D-tap. This also helped with constantly getting virus after virus. Do you have allergies? Are they being treated? Do you get better over the summer?
For more info about menopause read Christine Northrup's "Wisdom
of Menopause" Now you have lots of homework to do on your time off :)
Lastly, hang in there! Teachers take care of other people so much it is hard to take care of yourself, but you are very important too! It is hard to be looking for the solution and feel it is out of reach. I am hopeful you will find the answers to help.
Let us know how you are doing.
Elbamom
As a former educator I know how hard it is too miss teaching. I hope you get lots of ideas from the community. I did have some thoughts.
First, I wondered if maybe this is good time to have an immunologist look at your blood work and symptoms. Can your PCP recommend one? If not, contact the Immune Deficiency Foundation (IDF) at www.primaryimmune.org They are very helpful and can recommend an immunologist in your area. They currently know about 150 different types of immune deficiency. They are free and very helpful. Lots of good info on their web site. Look at their publication section for lots more info, on immune deficiencies, testing, support groups, legal rights, etc. Some immune deficiencies can start at any age of life. Most docs. just aren't aware of these areas as they are a specialty all of their own.
Did either the IGG or IGA say they were in the below normal range? If so, you might be looking at CVID= common variable immune deficiency.
This is very well known at the IDF and they have suggestions for treatment. Your IGM, and IGE should also be tested.
I like to get all the info I can about something and it is so frustrating to not know what is wrong, and how to improve your situation. I think you are on the right track, you just need someone to put the pieces of the puzzle together.
This is where I think the community here, an immunologist and the IDF can be very helpful.
Second, looking at your blood work I wondered what type of vitamin D you are taking and how much daily. I hope it is D3 which is easily absorbed in the body and that you are taking 5,000 to 10,000 IU a day. From 8 to 20 ml is good but the optimal level is between 50 and 70 ml. Two D3 blood work checks a year should allow you to make sure you are at the optimal level. Then you can adjust your D3 as needed.
For more info, about D3 go to www.vitamindcouncil.org.
Costco, walmart, walgreens have D3 cheap and over the counter.
To absorb, D3 needs some co-factors like magnesium. Magnesium will also help with the migraines. Was the blood work at normal level for magnesium at the low end or mid-range? Maybe a magnesium supplement would be helpful too. More about magnesium and migraines from a post Red_Star gave to another person. Many people are low in magnesium, and vitamin D3.
Third, is it possible to have your vaccine levels rechecked? I know how nasty and germy schools can be. My family had their vaccines levels rechecked and some of us were re vaccinated with D-tap. This also helped with constantly getting virus after virus. Do you have allergies? Are they being treated? Do you get better over the summer?
For more info about menopause read Christine Northrup's "Wisdom
of Menopause" Now you have lots of homework to do on your time off :)
Lastly, hang in there! Teachers take care of other people so much it is hard to take care of yourself, but you are very important too! It is hard to be looking for the solution and feel it is out of reach. I am hopeful you will find the answers to help.
Let us know how you are doing.
Elbamom
The sleep study report is rather confusing and in retreading it, I figured out that I had only 1% of total sleep in REM sleep...3.6 minutes, and it wasn't until 54 minutes before they woke me up. I spent a total of 47 minutes in stage 1, 51 in stage 3 and 261 in stage 2. It took 20 minutes to go to sleep. The sleep expert's comment was to "treat underlying medical condition." Ha! Wish we could!!!!
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