Who Needs Doctors

It's been a long time!

2014-06-29T23:52:00.001-05:00

Wow, it's been over a year since I last posted. I have been so busy since having my squish on October 20th 2013.

I had her at 11:47pm after 18 hours

of labor. Delaney was 7 LB 10 oz and 21 3/4" long.

My pregnancy was relatively normal minus having to give myself shots of heparin everyday. I achieved remission at about 6 weeks pregnant. I am happy to announce I am still in remission. I still take a baby aspirin for APS, but that is all.

I have no fevers, rashes, migraines, or even capillary bleeds. (Well at least ones you can see by the naked eye) My nailfolds are still abnormal there are still small bleeds, but nothing to bad.

Overall, I haven't posted lately because I have had nothing to post about. I've been very lucky, and I am enjoying raising my daughter without being sick for now.

I'll leave you guys with some photos of my now 28" and 20lb little girl. Remember if you have any questions. Please e-mail me at crimsomstar@yahoo.com I will always respond as quickly as possible. I'm not sure how long I'll stay in remission, but I still want to help.

2013-05-08T18:01:00.001-05:00

I just wanted to announce that we are expecting! Baby #1 So far every thing has been going well and I am 16 weeks along! I am just taking a baby aspirin and lovenox for my APS at this point!

Possible Pterygium inversum inguis

2012-12-21T23:38:00.003-06:00

Well I think I finally got some good photos of my skin issue with my nails this is why I have gone to staying with just fake nails because the skin growth is so long below if a nail rips it rips my live skin and it burns and hurts so badly does anyone else have this?

Going to Work at Giving Work Another Go!

2012-06-29T08:51:00.000-05:00

Hi, I hope everyone is doing well! I don't write as often as I used to but after my 20 page summary on Nail Fold Capillaries I'm kind of out of topics for now! Not such a bad thing, I guess...lol

I am getting married in less than 3 months now, and that is keeping me pretty busy! I've been pretty lucky with my health as of late! Aside from the Gastroparesis and Anemia other issues have been staying at bay! *knocking on wood*

With this in mind I've decided to go and give work a try again! Last year I had to quit working abruptly when I developed a kidney infection along with swelling and other such non-sense! I feel I made the right decision, but at the end of the day money is what makes the world go round and my part-time independent contracting gigs just don't pay the bills!

So as of yesterday 6/28/12 I started working again, hopefully full-time, it's along the same lines of my previous job but with a different twist! I will still be working with disabled individuals just with a different organization!

Pay is better and so are the hours!

a little bit more of an incentive to work even when I feel like you know what!

I have concerns about flaring when I start working again but I'm gonna give it a try and see what happens! Worse comes to Worse I'll have to reduce hours! But I just wanted to say hi!

Please remember even though I am not constantly writing new material at the moment if you have any questions or just want to talk to me about my blog and what I've learned though this pas 1 and 1/2 years just send me an e-mail at crimsomstar@yahoo.com

I will always answer an e-mail request :)

2012-04-20T17:34:00.002-05:00

I went and saw a dermatologist today he did diagnose this as "Pitted Keratolysis" I was given Clindamycin 1% solution. He said it should go away in about a week. So my feet will be back in wedding shape soon. He did warn me that it will come back. It is caused by a bacterial infection with people who have sweaty or in my case clammy feet. I need to keep my feet dry and hopefully it will stay gone. I was told that I can put anti-perspirant my feet as well! he said he hadn't seen this in years. He was a tad excited about it...lol

Can you imagine ~

Capillaroscopic Findings

2012-04-07T17:30:00.000-05:00

Add caption

Nail Fold Capillary Collages

2012-04-07T12:56:00.001-05:00

All of these photos were taken on the same day on April 6th 2012 they were all taken with the same USB Microscope and the same type oil.

LEFT INDEX

LEFT INDEX AT 50X AND 420X ZOOM
IN HDR EFFECT

LEFT INDEX NO EFFECT

LEFT MIDDLE NO EFFECT

LEFT MIDDLE HDR EFFECT

LEFT RING NO EFFECT

LEFT RING HDR EFFECT

RIGHT INDEX HDR EFFECT

RIGHT INDEX NO EFFECT

RIGHT MIDDLE NO EFFECT

RIGHT PINKY HDR EFFECT

RIGHT PINKY NO EFFECT

RIGHT RING NO EFFECT

RIGHT RING HDR EFFECT

Nailfold Capillaroscopy 101

2012-04-07T11:14:00.001-05:00

Okay well I have been posting pictures of my nail fold capillaries for some time! I guess now it would be a good time to get into the meat and bones of the procedure! I am by no means a medical professional and am just writing my opinion based on what I have read from studies and personal research! If you have any type of concern that you have nail fold capillary issues you must go and see a medical professional and let them evaluate your situation!

Nail fold capillaries are the window in the body. When talking about connective tissue diseases many can cause changes in the structures and individual capillaries. Usually the nail folds look like upside down U's and the pattern generally is in a picket fence arrangement. The pattern is homogeneous (all the same)!

The technique can be done using various tools. An ophthalmoscope, dermatoscope, microscopes, and many various USB microscopes. I use a USB digital microscope to get the pictures that I have taken on this blog. My Rheumatologist just used an opthalmoscope. Each technique has its perks using the opthalmoscope and dermatoscope are the most common at doctors offices because these are tools that the clinicians already own.
The next part of the procedure is using some type of oil at the doctors office they usually use either immersion oil or a lubrication jelly like KY. This allows the light to see past the thin layer of skin and actually view the capillaries itself. At home you would most likely have baby oil however I like to use Vaseline Cocoa Butter Vitalizing Gel Body Oil you can purchase this at target. I will write a separate posting on different post on other options.

With the scope and oil you can then do the nailfold capillaroscopy technique.

1The nail fold capillaroscopy is usually preformed by your doctor during a physical exam. Not every doctor will perform this and many don't even know how to perform this! In my opinion I think every doctor should at least be able to perform this and at least tell if it is normal or abnormal!

2This test is performed to check for capillary abnormalaties that can accompany connective tissue disease (but also many other diseases). Usually this test will occur after you have been shown to have Raynauds Disease. In the very narrowest aspect of the test (but also the most important) it is used to check for abnormal patterns in the consistency of the capillaries but also the individual capillaries. If found that would be consistent with Secondary Raynauds! Within the human population many people have Raynauds but there is a small percentage who's raynauds is indicative of a connective tissue disease!

3Once you have had the test done the most basic result will be if it is abnormal or not either secondary raynauds or primary raynauds. If it is considered to be primary raynauds that is really good news! I still believe that other tests should be done to check for connective tissue diseases like an extensive blood work. Not everyone will have capillary changes and you could still progress into a connective tissue disease but the odds are still very low! If the conclusion is secondary raynauds now is the time to try and figure out what it is. It would be a really good time to go and visit with a Rheumatologist! (if you haven't done so already) They will more likely be able to figure out which connective tissue disease it is that you have based on the capillary finding and serological findings (blood tests). One of the most distinct patterns is the scleroderma pattern there are stages (but you are likely not going to get a stage from just any doctor) there is Early, Active, and Late. Early

Overall, I really feel that if you are experiencing any type of symptoms that would point at an autoimmune, rheumatic, or connective tissue disease a nail fold capillaroscopy is a must! I will be very happy when every clinician in the field knows how to use this procedure and actually implements it!

Just an update!

2012-03-29T00:02:00.001-05:00

Just an FYI I can still do girly things to not just take
medical pictures...haha

I have yet to see a doctor about this but it may be pitted keratolysis. I've had this for awhile didn't actually know that it could be a medical condition it claims that this happens with people who have sweaty feet. However my best guess is that it also happen in people that have raynauds and have cold clammy feet!

Here is a nail fold capillary of mine I like to call this the cat's cradle because the capillaries with the capillary wrapped around them reminds me of the game of cat's cradle which you play with your fingers and yarn! You can also see many variation of nail fold capillary abnormalaties here including: crossed, enlarged, elongated, the string looking thing I think is angiogenesis but I'm not sure!

you can see avascular areas here were the microhemorrhages are right above them this is also what I believe they call capillary drop outs! there are also bushy capillaries which is that big capillary that is bleeding!

Here is a close up on the busy capillary also showing crossed capillaries and other morphological abnormalaties!

this is a picture of my pinky please remember that I often enhance the colors of my photos to show the patterns on the capillaries better! this picture shows where the capillaries connect too. You can see many crossed and elongated capillaries that almost makes me suspect lupus but idk sometimes I wish I was the doctor!

Here I used the black and white effect then used the pencil drow to kinda show the outlines of some abnormalaties!

more drop outs in a less zoomed in view probably about 20x zoom!

black and white take on the capillaries that was then auto-contrasted it looks pretty cool1

Now here is a picture with no alterations to color you can still see the capillaries if you look good but I think enhancing the color makes it much more obvious!

Here is some nice fresh blood...lol I must of caught this capillary right as it exploded! You can tell the the one to the left is much newer as the blood had not coagulated like it has from the capillary that is bleeding to the right of it!

2 month Nail Fold Capillarscopy review

2012-03-23T12:55:00.002-05:00

These are photos that I took myself with my USB microscope. I'm still trying to figure out what it all means but I just wanted to share!

Is Gluten Free the Way to Be?

2012-03-14T13:32:00.002-05:00

I met with a OBGYN today and since I am getting married we are planning to try and conceive (TTC) In about October! I will be a hi-risk case and my OBGYN suggested that I try going gluten free for 1 month and see if some of the AI issues could lessen in severity! I've heard others say that going gluten free has really helped them!

Now I'm not 100% sure yet if I am so ready to try this. I am about 1 month off of all medications aside from a baby aspirin for APS antibodies melatonin to help sleep at night (yes, I know there are some issues out there about melatonin with AI issues.

However, I have had no issues thus far and it is helping me sleep. So for now I will stick with it.) Between going off of so many meds and the new Gastroparesis diet which I am struggling with and have kind of given up on for now! The reason being that it requires no fiber only processed foods and I am already having issues with gaining weight as I tend to become pre-diabetic easily.

In fact, I am getting my insulin tested as we speak to see if PCOS has come back since getting off of birth control! If this comes back high I will likely end up on metformin again which really helped me get health as far as hormones go at the very least! But this really complicates my diet and such. So the idea of going gluten free at the moment really seems like putting a vice grip on my diet!

We do have a new gluten free store and I know there are lots of recipes out there and such so I may consider giving it a go! But I will be putting some research into this. If I decided to do this I will let you know how it goes and if I find any good recipes and such!

No medications for 3 weeks now!

2012-03-03T20:23:00.002-06:00

Well I haven't posted in awhile the main reason for this because I haven't gotten much more news. I was hoping for a referral to Mayo, but once again medicaid said no. My symptoms are continuing I had a check up from an ENT who felt that I definitely have Sjogrens she suggested a small gland biopsy. However, my PCP didn't order one. I am going to see a dermatologist on April 4th.

The hopes will be that he can do several skin biopsies to either rule in or rule out certain possibilities like if I actually have APS and the livedo racemosa and not the livedo reticularis. The biopsy of the livedo should help rule that in or rule that out.

In the mean time the PCP thinks that I should stop my medications well I had cut down to just 3 medications already anyways. So I just decided to go off of all medications. I wasn't sure how I was going to do with this but I am at 22 days now and I am doing alright.

The PCP felt that some of my medications were worsening my AI symptoms possibly even causing gastroparesis and tremors. So I stopped it all I was planning on doing this anyways. I am getting married on September 21st 2012! We will be trying for a baby once we are married (after the honeymoon). I am worried about being pregnant and going on vacation so we will do the honeymoon early October and then try afterwards.

With no meds I have had a 98% reduction in my GERD symptoms which is great the Gastroparesis is still very real though and not getting any better. I wouldn't say that it is getting any worse either though! So this is a good thing!

All of the other swelling pains and vascular types of issues are all still the same. I was having quite a bit of swelling of my knuckles and this seems to be subsiding finally, but I don't think it was related to stopping or stopping any medications.

I have been losing my head hair and I didn't shave for a little while and realized that I have bald spots all over my legs too. In the middle of all of this I was diagnosed with Pelvic Floor Dysfunction with non-functioning pelvic muscles. I have been doing physical therapy for this.

Another issue that seems to have resolved itself is the chronic dry mouth. However now I have too much saliva which is odd. My eyes are still really dry. I still get fevers and fatigue and I am finding it really hard to get through my school work with all of this going on.

The rheumatologist told me to take a baby aspirin a day because of the APS antibodies and the livedo but she won't try and figure out what else is going on. My platelettes and blood counts have been low so I want to get my blood checked and make sure it is normal before I start that.

Anyways, I'll keep you all updated hopefully the dermatology point helps reveal some light on what is going on.

In the Greater Scheme of Things!

2012-01-28T02:17:00.000-06:00

Sometimes I feel rather silly to sit there and worry about something like my nail fold capillaries, but when I really start to think of it and all of the implications of it. The idea is pretty scary. Yes someone may wonder why does it matter if I am missing some capillaries in my nails what's the big deal?

Well 1st thing the reason why a person does get secondary raynauds is because of capillary changes. Now the nail fold area is one of the easiest areas to detect the capillaries, but just because they look for them there it doesn't mean that is the only place that they are abnormal!

I had the unfortunate idea to look at my capillaries in my gums... well guess what they are all messed up to! So if the capillaries in my gums are all inflamed and swollen. With areas where there are no capillaries what so ever what are the greater implications for my teeth?

I really am not sure but my best guess is next time I go to the dentist my teeth are not gonna be as healthy as they once were! In fact, I am afraid to go to the dentist because of the bad feeling in the pit of my stomach that the Sjogrens will lead to the loss of my teeth!

My capillaries

I never got cavities before I got sick but I'll have to make an appointment and just go from there! Now these capillary changes as minute as capillary may be I think the impact of this is so far reaching..

My Fiance's Capillaries

My love of my life and my favorite guinea pig my Fiance! Let me use him to see what his capillaries look like! They are much smaller than mine so the technique to get photographs took a little bit more time than it did for myself, but alas I have them! So lets do a side by side comparison!

My capillaries with bleeds

Fiance's Capillaries again

Can you guys see the difference? I could only view his capillaries at 60x zoom if I went any further in they would not focus my capillaries are much larger in size to his. The capillaries themselves are normal looking.They are all spaced out evenly amongst each other. To where with my capillaries the spacing is uneven. Some of my capillary loops are 3 to 4 times larger thanthe regular loop. I still constantly get bleeds in my cuticles from the constant inflammation that occurs in my capillaries. While I have never once seen capillary bleeds in my Fiance's nail folds even after traumatic injury to his nail bed. Anyways I just wanted to show the difference between my nail folds and someone else's nail folds.

2012-01-25T12:42:00.001-06:00

Hello to my WND (who needs doctors) friends! I want to continue to expand on what I am writing about it may expand to the point. Where I think it would be most beneficial to have a few separate but intertwining blogs.

Here are some of my ideas!

1. Real Life Stories - what happened to you and what your journey was
2. Tips, Tricks, Ideas - things that we figured out on our own (like my nail fold time line or the telangiectasia)
3. Symptoms known and unknown I want to do these by particular symptoms like Livedo Reticularis, Raynauds, Malar Rash stuff like that.

I am in the middle of my Spring College Semester but if anyone want to share this can be completely anonymous or you can take credit for it. If your not comfortable writing or want certain features in a picture blocked out I will do this and I will also make sure that you are allowed to see the picture b/f it is posted if there needs to be changes.

I think that this will flood the search pages with a lot more pertinent and personal information! If anyone wants to help please let me know.. remember I want personal experiences and not just something from a health website.

Nail Fold Capillaries at 400x zoom!

2012-01-16T15:33:00.002-06:00

Here are capillaries on my gums

Enlarged Capillary and Irregular with Bleeds

Pinky Finger

More Photos of Nail Fold Capillary Changes

2012-01-10T17:10:00.002-06:00

My own capillary investigation

2012-01-09T19:29:00.002-06:00

Doctor Dilemma

2011-12-21T06:40:00.001-06:00

I have encountered probably one of the worse times in my life when it comes to my ability to have faith and trust my doctors. Part of this issue is present because doctors don't seem to pay attention to the little stuff.. They want to come in like they know everything and sometimes it seems like they will straight up just lie into your face..

Now I'd like to know why this happens. I really don't think that doctors schooling is taught any differently then any other educational field. I had a Rheumatologist tell me that Mayo was not accepting new patients currently when I had an appointment that actually got cancelled because she wouldn't do any paper work that would of allowed me to go.

She wanted to figure out my case and instead this on selfish act has had a resounding effect on the rest of my heath care.. this same doctor also told me that in order to be able to get a diagnosis of Lupus (SLE) that I would need all 11 of the criteria not just 5 of them like is stated in all of the medical books.. Now she said this in front of a intern and I just wonder is this attitude and behavior just all par for the course?

She never did figure me out. She did end being the cause of my two doctors appointments at Mayo to cancelled.. she then further tells me she won't be doing any further tests because by time I come back she will not be here anymore..

She left me with a dermatology referral that didn't do me any good, a 3 month follow-up with an unknown doctor, and with that I needed to urgently see my PCP who is 3 1/2 hours away for my high heart rate (which is seeming to finally come down some thank god)

Well Receptionist said there was no one to take her place this was back in September and they said they would call me with an appointment when she got her replacement. Surprise Surprise I guess that replacement never came!

The Dermatologist told me that I should of stood out in the sun longer if I wanted to prove my malar rash I guess I didn't think that was really necessary since it was already of said to be a malar rash by the rheumy... He told me that I didn't need to waste my time so far away from my home and that I should see one of the dermatologist that were closer to home..

The bad thing about that is that there are no dermatologist taking new patients right now so where do I go.. Currently I am waiting on a letter from my 3rd and newest Rheumatologist she somehow seemed negative in my mind. she looked and said you are in no eminent danger (and it's like no kidding) she said that she wasn't sure anything was wrong with me at all.

And that I'd be lucky if I even would get a diagnosis of Undifferentiated Connective Tissue Disease she also did run a lot of tests again... Which is great that they are trying to catch something but some people just don't get these tests back as abnormal I tend to be one of those people then for the ones that I do have abnormal it is never quite abnormal enough...lol

With the diagnosis of the Gastroparesis I was hoping to finally be able to say that we have made some serious head way but I feel like these last 2 doctors have actually pushed me a few years backwards into the diagnosis instead..

She decided to you the 4 letter F word FIBRO... now I do believe in Fibromyalgia I know that it is real and I know that many people suffer with this really real disease.. However, when you doctor diagnosis's you but doesn't tell you the diagnosis and you get handed 2 books about Fibro and are sent out the door with Blood Tests where they took 14 tubes of blood and a urinalysis it kinda makes you head spin..

My head has been spinning every since I am hoping that I will be able to get my "letter" from the new rheumatologist is and see what her opinion is on the whole situation. However, I am still somewhat fearful she may not even feel the need for me to come and see her again and if this is the case I have quite litter ally run out of doctors that are even worth trying to get to help me at all....

So sad how much we really do need doctors sometimes ( I am only running out of specialist because of the state that I live in North Dakota) there are only so many then you have their "partners" which in my own experience usually doesn't help me out in the least bit..

Sorry for the rant my WND readers but I am just frustrated and watned to give an update!

Primary Biliary Cirrhosis (PBC)

2011-12-11T12:00:00.001-06:00

Primary Biliary Cirrhosis (PBC) is an auto-immune hepatic condition. PBC was once considered very rare and fatal.. However early detection and treatment has made this disease far more manageable. PBC is often tested when one has elevated blood test like the Alkaline Phosphate (ALP), AST, & ALT. When these tests are elevated PBC is one of the diseases that should be considered. PBC effects women the most age of onset is usually in the 40's but can happen at any age. The Anti-Mitochondrial Antibody is the hallmark antibody for PBC specifically the AMA M2 (variant). PBC also has a genetic component to it. It is said that those who have PBC any female 1st hand relatives (mothers,sisters, ect) have a 50/50 chance of having PBC as well.

From MedicineNet PBC

Primary biliary cirrhosis (PBC) is a chronic (long duration) disease characterized by progressive inflammation and destruction of the small bile ducts within the liver. What are the bile ducts and what do they do? Lined with cells named biliary epithelial cells, the bile ducts are tubules that make up a plumbing system for the liver. The bile ducts along with the gallbladder are part of what is called the biliary tract.

The plumbing system begins in the liver with very small caliber ducts that connect to increasingly larger caliber ducts, like a tree in which twigs connect to small branches that connect to larger branches. In fact, this system is often referred to as the biliary tree. The large right and left bile ducts, still within the liver, connect to an even larger common bile duct that runs outside the liver to the small intestine just beyond the stomach. The common bile duct connects by the cystic duct to the gallbladder. The gallbladder is a pear-shaped, expandable, sac-like organ in the biliary system. The branching bile ducts course through special tissue in the liver, called portal tracts, which act like conduits for the ducts. In fact, the branching portal tracts containing the bile ducts also contain the blood vessels that enter and leave the liver.

The bile ducts carry bile, a fluid that is produced by the liver cells (hepatocytes) and modified by the biliary lining (epithelial) cells as it flows through the ducts to the small intestine. Bile contains substances required for digestion and absorption of fat called bile acids, as well as other compounds that are waste products, such as the pigment bilirubin. (Bilirubin is a yellow-orange compound produced by the breakdown of hemoglobin from old red blood cells.) Bile is stored in the gallbladder between meals and discharged into the small intestine during digestion of the meals.

The inflammation in PBC starts in the liver's portal tracts and involves the small bile ducts in these areas. The destruction of the small bile ducts blocks the normal flow of bile into the gut. The medical term for decreased flow of bile is cholestasis. (Chole means bile and stasis means failure to flow.) Cholestasis is a very important aspect of this disease. As the inflammation continues to destroy more of these bile ducts, it spreads to destroy nearby liver cells (hepatocytes). As the inflammatory destruction of the hepatocytes proceeds, scar tissue (fibrosis) forms and spreads through the areas of destruction.

The combined effects of progressive inflammation, scarring, and toxicity of bile trapped within hepatocytes (liver cells) culminates in cirrhosis. Cirrhosis is defined as the stage of disease when there is both widespread scarring of the liver and clusters (nodules) of hepatocytes reproducing (regenerating) themselves within the scars. Since cirrhosis occurs only in the later stage of PBC, the name primary biliary cirrhosis is actually a misnomer for patients in the earlier stages of the illness. The more technically correct and ponderous term for PBC, chronic non-suppurative destructive cholangitis, however, has never been widely used and is unlikely to replace PBC.

Gastroparesis Diagnosed on 12/6/2011

2011-12-07T21:32:00.001-06:00

After several different GI testing that has been done in the last few months. Including a Barium Swallow, Upper Endoscopy, 24hr Ph testing, an esophageal manometry, and as well as other various ultrasounds and CT scans. The last and most recent test seemed to me the most telling..

This test was called a gastric emptying test.. They have you eat a meal usually consisting of scrambled eggs and a piece of toast in my case.. They have a radioactive tracer in the food you eat and they follow how much time it takes for your stomach to actually get rid of it's contents..

This was the one test I felt that was a pointless test to do, go figure! I did recognize that I did have symptoms of Gastroparesis but these symptoms can be caused by other issues. For me it seemed the most unlikely diagnosis but I realized after the 2nd hour of the test when I was told that I would have to at least stay for at least one more hour if not 2 more hours..

I had the feeling in my gutt that oh okay something is not normal.. I really didn't read much about gastroparesis I had a vague understanding of what it was. All I ca really say is my understanding is still fairly vague..

Gastroparesis is when your stomach is some way becomes paralyzed it can not empty the contents of your stomach quick enough and this leads to some very bothersome and at times life threatening complications..

The diagnosis of Gastroparesis is given when at 4 hrs there is 10% or more of the contents still left in your stomach.. I had 25% left at 4 hours and according to what I have read this is considered moderate gastroparesis.

I feel that my gastroparesis is secondary to the auto-immune connective tissue disorder that I have.. Even though at the time it still remains undifferentiated.. I doubt it will stay that way for very long!

Honestly, Gastroparesis is the first diagnosis I have gotten that I had a definitive test with a definitive diagnosis and not just "suspected". It is a bit of a double - edged sword. I know many of you will relate to when you have been sick for so long you feel like you are going crazy..

When test after test is negative and they say they don't know why while there is relief that there is one more thing to cross of the list there is also some despair that you are not well and no one knows why.. Conversely, when you get a diagnosis and you have been chronically ill already you may not suffer the same shock as others..

I was a little numb but at the same time I felt validated.. I felt like I was not suffering for no reason.. And that while it is an incurable condition it is one that has many methods to cope with the symptoms.. From dietary changes all the way up to gastric tubes to help keep you nourished..

I will detail the actual science behind all of this once I have a bettor grasp on the Gastroparesis condition myself...

I met wonderful support on the AGMD GI Motilitty Disorders Group on Inspire.. they also have a great scleroderma group that i am a a part of as well.. Gastroparesis does occur with Scleroderma but it is more common to happen from complication of diabetes, gastric surgeries, and sometimes for no known reason at all it is called Idiopathic Gatstroparesis.. I feel my case is connected to my connective tissue disease but crazier thing have happened..

Please stay tuned I will be posting more info as I learn my way through the whole Motility part of the health world now! At least I get to learn something new everyday!

Inspire - AGMD GI Motility Disorders Group

A great blog and facebook page:

Facebook Living with Gastroparesis and EDS

assoiciate blog:
Ehlos-Danlos Syndrome and Gastroparesis (blog)

Please feel free to visit these sites to gain even more information I will post more as I learn more for now I am a Gastroparesis newbie..lol

I did make a facebook group myself for gastroparesis which you can get access to at
Gastroparesis (FB Group)

Then my Facebook Group for this Blog Who Needs Doctors (WND) at
<3 Who Needs Doctors <3 ( FB Group)

Gastroparesis Diagnosed via Gastric Emptying Test

2011-12-06T15:58:00.003-06:00

According to Mayo Clinic - Gastroparesis

Gastroparesis is a condition in which the muscles in your stomach don't function normally.Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and play havoc with blood sugar levels and nutrition.There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that's not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects.

Today 12/06/2011 I was given the diagnosis of Gastroparesis. This diagnosis was given based on the Gastric Emptying Study. My test results showed that after ingesting a meal of scrambled eggs (laced with a radioactive tracer) and a piece of toast with a little water... Thant it took 2hours and 11 minutes to get rid of 50% of my stomach contents. T-1/2 (meaning 1/2 of contents emptied) at 131 minutes is considered to markedly delayed. Then at 4 hours I still had 25% of the food I ate left in my stomach.. this confirms the diagnosis of Gastroparesis. When having this study done if you have 10% or more food left in your stomach after 4 hours you can be diagnosed with Gastroparesis.

When the GI doctor's nurse called me she told me that I did have gastroparesis and there were medications to help this condition but that my doctor wants me to try dietary changes first. I will post more about that when I learn more.

The most well known cause of Gastroparesis is from Diabetes Mellitus, however it can be caused by other conditions like connective tissue diseases, medications, surgeries, and there is also idiopathic gastroparesis that has no known reason as to why it happened.

My UCTD Fox

2011-12-01T18:12:00.000-06:00

Representation of how I feel bombarded by all

of these different diseases all at once...

SCLERODERMA (the flower)

SLE (LUPUS) (the butterfly)

RHEUMATOID ARTHRITIS

SJOGRENS (the tear)

POLYMYOSITIS

DERMAMYOSITIS

These are connective tissue disease that develop from auto-immune issues. Some auto-immune issues like Mixed Connective Tissue Disease and Undifferentiated Connective Tissue Disease often involve at least 2 if nor more of these conditions all at one time.. Seems kind of overwhelming doesn't it?

Who Needs Doctors on Facebook

2011-12-01T17:56:00.000-06:00

Who Needs Doctors

We have a really active community of Facebook please follow the link above and ask to join WND on Facebook. It is a closed group so once you have joined you will be able to share anything you like and it will all be private!

Amsler Grid for use while taking Plaquenil

2011-11-28T08:29:00.000-06:00

Amsler Grid

For those of you that are on plaquenil.. I have attached a picture of an Amsler Grid some of you may know what this is others may not.. When I first got prescribed plaquenil I had to get a field of vision test done.. My opthamologist gave me the okay to take plaquenil and he handed me this grid.. He told me to put it on my refrigerator and to look at it once a day with each eye individually. He said if the lines ever looked to be not straight to stop the plaquenil immediately and come in and see him.. I just had a friend who got prescribed plaquenil and had no eye test can't get in for 2 months and no
grid so I thought I'd post that on here
since I know many of us are on
plaquenil.... here is a pdf that you can
down load and print off of too.

Amsler Grid PDF

Amsler Grid resource

Various Rashes

2011-10-22T15:35:00.001-05:00

I haven't had many really obvious symptoms but as time progresses some of these symptoms have become easier to see and therefore easier to photograph. The only picture that has a confirmed cause by a doctor would be the 1st photo of my finger tips with the ragged cuticles and extravastes that are caused by, at least in my case, nail fold capillary drop outs.

Ragged Cuticles Along with Extravastes

(common with Scleroderma, Dermamyositis, & MCTD)

Unknown Rash loosk similar to that of Grottons Papules

on knees of those who suffer Dermamyositis

Rash unknown but consistent with the Grottons Papules

of those affected by Dermamyositis.

Possible Grottons of the Elbows again

Possible variation of Raynauds Purplish/Black coloring

on the knuckles of the toes when cold

Unknown Symptom that occurs when hands get to warm

or to cold. Looks similar to rashes called Grottons Papules

that occurs in those who have dermamyositis

Knuckle abnormalities from heat

Redness over elbows for no known reason similar

to Grotton's Papules as well!