This is really for my own sake. As I was going through my medical records last night, it threw me off a little ... how serious is my ILD? And no doctor has ever addressed the small vessel vasculitis with me. As you'll see... in 2008 I was diagnosed with Sjogren's also, and a few other "goodies". This other stuff kind of faded, a bit ... I'll have to see for sure. I was tested for lungs, heart, breathing tests, etc in 2008 or 2009.
So I'm throwing some stuff up here from my records, this page WILL change .... I want it to be more complete.
My biggest health complaints now are depression and other mental issues (confusion, etc) - (have had depression symptoms over half my life. Yes, being treated!) and fatigue, and if not fatigue, sleep patterns.
I'm wondering if any of this vasculitis has affected my CNS
(Note to self: see if I've ever been tested for antineutrophil cytoplasmic antibody (ANCA))
08/23/2000 Chest PA/LAT
"Reason: 780.6" is this a diagnosis or symptom?
http://www.icd9data.com/2013/Volume1/780-799/780-789/780/780.60.htm
(FEVER)
( My note : may have been starting to check for leukemia)
09/28/2000
2 results for pre muscle biopsy op?
"Chronic interstitial Prominence"
(My note: I just read this is ILD .. -- until 2008, nobody every tested me for the Jo-1 antibody)
05/20/2010 found on an order for blood - on every test to be ordered
356.9 UNSPECIFIED IDIOPATHIC PERIPHERAL NEUROPATHY
http://www.cms.gov/medicare-coverage-database/staticpages/icd9-code-range.aspx?DocType=LCD&DocID=33068&ver=9&Group=1&RangeStart=356.0&RangeEnd=356.9
710.4 Polymyositis
http://www.icd9data.com/2014/Volume1/710-739/710-719/710/710.4.htm
09/30/2000
Results of Muscle Biopsy - various records
"C3D - a few scattered vessels have fluorescent deposits within their thin walls with C3D. These findings are consistent with a vasculitis. "
Other Muscle Biopsy report
(My note: be specific about reports)
"Apparent 2B (IIB?) fiber atrophy and a few other scattered fibers are also small. QUESTIONABLE FIBER TYPE GROUPING "
(My note: http://neuromuscular.wustl.edu/lab/mbiopsy.htm#fibertype , also
see Younger Vasculitis article )
More on Muscle Biopsy report:
"Several vessels surrounded by inf.???? cells, with some involvement of vessel walls.
UNCERTAIN OF FIBRINOID NECROSIS"
"Cellular Response: Scattered interstitial cellular infiltrates, mainly of mononuclear (small lymphocytes) with plasma cells and occasional eosinophils."
"Interstitial Tissue: Slight to mild increase in endomysial collagen in zones of perifascicular atrophy - on Mason trichrome????"
"Nerve Twigs: none".
(My note: YAY)
(My note: fill in missing section here)
"Diagnosis: Skeletal muscle biopsy - right quad: Inflammatory myopathy - of moderate severity - with perifascicular atrophy and small vessel vasculitis."
(note: there is a Comment under DX as follows)
"The pattern suggests dermatomyositis, with perifasicular atrophy, a change which is more apparent on the parrafin sections then on the frozen sections. This pattern frequently co-exists with small vessel vasculitis".
Sunday, April 27, 2014
I'm still around, figuring out my next move.
Hey you out there!!
Wow, it's been a LONG time. I honestly forgot I had this blog.
Unfortunately it's not because I'm well.
I fell apart at the seams, like Raggedy Ann. :)
I can't believe that in my last post of 10/2012, I didn't mention I just got up and "resigned" from my job earlier that year. I did give notice of course. I'm telling you I fell apart.
I'm still unemployed, almost broke, I found insurance because my COBRA ran out, I know I need to find a job, my mind is a mess and I worry more about my mental health now than physical.
However a friend of mine was doing a paper on PM and Jo-1 antibody and I gave him some information. It prompted me to put all my medical records in order.
Hmmm .... I've been diagnosed with things I really didn't know.
And, I don't have MCTD at all. Maybe UCTD but to me, that's just become a title for 'overlap'. I have PM with normal CPK but will always have Jo-1 antibodies however my lungs don't bother me that much. I do tire easily and I'm not sure if it's from my initial diagnosis and all the damage done to my body by the polymyositis, or if it's because of my lungs. In the few years past, I've had many many tests. My lungs weren't that bad, even though the reports keep saying CHRONIC INTERSTITIAL something or other .. and my heart, is actually well (as of a couple of years ago). After going through ALL my records putting them in order last night and tonight, I realize I'm missing a few (from even 10 or more years ago, but important ones).
I want to piece this puzzle together. In 2006 I had to have a cervical polyp removed. Also my endometrial lining was thick so I had a Dilation and Curettage. (wasn't pregnant!!!! This was just to remove the excessive lining). I was looking at the preadmission records, something I probably never did, and all my blood tests were normal!!!! They of course only took the CBC and metabolic tests, but all were normal. I think I was feeling OK at that time.
VERY shortly thereafter, after the surgery, I felt like poop. I had a 1 year fatigue episode, and a really bad carpal tunnel episode which was really due to swelling in my wrists. But I started feeling bad. After that D&C, something did go kind of "strange". The fluid that I guess they fill your uterus with (do I have that right?) ... didn't come out at the end of the surgery. I remember the doctor, saying "where'd it go????".
I normally run a little dehydrated but .... They kept me overnight (I probably wrote this here already, but not in this context) and tried to get me to pee. Pumping more fluids in me. I didn't pee alot.
In general I'm not one that has to pee every few hours.
But, ok, back to the subject, what happened to me between approximately June 2006 then 6 months later getting symptoms (which led to a new rheumatologist, another diagnosis of Sjogren's which has serious fatigue symptoms for me, but funny, my mouth is no longer dry. My eyes are, but my mouth isn't. A naturopath I went to last year said I had alot of mucus (poop test). How could I have so much mucus and be so dry with Sjogren's?
Maybe I'm just too naive. Putting my records in order, I'll make little charts (I have some blood charts I used to update to track my blood tests) ..... see what happens.
I do have ADD and associated OCD which is why my posts are so long and either all over the place, or overly hyperfocused (like the one about the lost luggage, LOL). Just thought I'd put that out there for you readers. Not sure if anyone will read anyway, but it's OK.......
Hope everyone is OK, I have to catch up. The past few years have not been good for me, and now that I'm practically homeless (not really, have nice condo, but won't be able to afford it soon!) ..... my life will change drastically in one way or another very soon. I hope to be able to get a job that pays well enough for me to stay here. It's difficult in my profession when I've been out of the market for almost 2 years!
Thanks for reading!!
Wow, it's been a LONG time. I honestly forgot I had this blog.
Unfortunately it's not because I'm well.
I fell apart at the seams, like Raggedy Ann. :)
I can't believe that in my last post of 10/2012, I didn't mention I just got up and "resigned" from my job earlier that year. I did give notice of course. I'm telling you I fell apart.
I'm still unemployed, almost broke, I found insurance because my COBRA ran out, I know I need to find a job, my mind is a mess and I worry more about my mental health now than physical.
However a friend of mine was doing a paper on PM and Jo-1 antibody and I gave him some information. It prompted me to put all my medical records in order.
Hmmm .... I've been diagnosed with things I really didn't know.
And, I don't have MCTD at all. Maybe UCTD but to me, that's just become a title for 'overlap'. I have PM with normal CPK but will always have Jo-1 antibodies however my lungs don't bother me that much. I do tire easily and I'm not sure if it's from my initial diagnosis and all the damage done to my body by the polymyositis, or if it's because of my lungs. In the few years past, I've had many many tests. My lungs weren't that bad, even though the reports keep saying CHRONIC INTERSTITIAL something or other .. and my heart, is actually well (as of a couple of years ago). After going through ALL my records putting them in order last night and tonight, I realize I'm missing a few (from even 10 or more years ago, but important ones).
I want to piece this puzzle together. In 2006 I had to have a cervical polyp removed. Also my endometrial lining was thick so I had a Dilation and Curettage. (wasn't pregnant!!!! This was just to remove the excessive lining). I was looking at the preadmission records, something I probably never did, and all my blood tests were normal!!!! They of course only took the CBC and metabolic tests, but all were normal. I think I was feeling OK at that time.
VERY shortly thereafter, after the surgery, I felt like poop. I had a 1 year fatigue episode, and a really bad carpal tunnel episode which was really due to swelling in my wrists. But I started feeling bad. After that D&C, something did go kind of "strange". The fluid that I guess they fill your uterus with (do I have that right?) ... didn't come out at the end of the surgery. I remember the doctor, saying "where'd it go????".
I normally run a little dehydrated but .... They kept me overnight (I probably wrote this here already, but not in this context) and tried to get me to pee. Pumping more fluids in me. I didn't pee alot.
In general I'm not one that has to pee every few hours.
But, ok, back to the subject, what happened to me between approximately June 2006 then 6 months later getting symptoms (which led to a new rheumatologist, another diagnosis of Sjogren's which has serious fatigue symptoms for me, but funny, my mouth is no longer dry. My eyes are, but my mouth isn't. A naturopath I went to last year said I had alot of mucus (poop test). How could I have so much mucus and be so dry with Sjogren's?
Maybe I'm just too naive. Putting my records in order, I'll make little charts (I have some blood charts I used to update to track my blood tests) ..... see what happens.
I do have ADD and associated OCD which is why my posts are so long and either all over the place, or overly hyperfocused (like the one about the lost luggage, LOL). Just thought I'd put that out there for you readers. Not sure if anyone will read anyway, but it's OK.......
Hope everyone is OK, I have to catch up. The past few years have not been good for me, and now that I'm practically homeless (not really, have nice condo, but won't be able to afford it soon!) ..... my life will change drastically in one way or another very soon. I hope to be able to get a job that pays well enough for me to stay here. It's difficult in my profession when I've been out of the market for almost 2 years!
Thanks for reading!!
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