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Kathy D

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Posts posted by Kathy D

  1. Any thoughts on this? I am having new and more intense hot flashes. I am confused, thought menopause had already happened and I was done, no menstruation for many years and hot flashes back then too.


    I had terrible night sweats from 2000-2008 til I was diagnosed, the medication helps a lot; I still sweat at night, thankfully not as much (less chills after soaking pillow and pj's). My thyroid went hyper in late 2011, now in remission according to bloodwork. My doctor called it Mild Graves Disease. LOL it did not feel mild to me!


    I had 3 week cycles for decades, yes, 3 weeks, not 4 weeks. Then, IUD placed, unknowingly on top of a large uterine polyp. At that time I was so sick from Sclero, not diagnosed, I complained but was not heard and not my normal vocal self kind of patient, constant bleeding and infections for a couple years until IUD removed, large polyp removed (benign), then, a few sparse periods. Conceived miracle baby during that time, gave birth at age 40.5 then from sporadic to no menstruation again in a year. Almost 4 years later after that I am having more intense hot flashes. My annual ob/gyn check ups are normal.


    How in the world am I getting so HOT sometimes now? Possible my defunct ovaries finally gave up though menstruation stopped several years ago?

  2. I began an anti-inflammatory eye drop and dry eye prescription the other day. (the ones prescribed last summer ). Eyes look better and feel better. Still have a small bump on swollen eyelid, starting to think I rubbed my eyes too aggressively and injured an eyelash or gland,or something, still not ruling out a down feather in my pillow scratching haha. But it's healing :)


    Amanda, I am so sorry you have frequent migraines. I have infrequent migraines but they still knock me on my rear when I get them. Last winter I had a string of daily migraines, used up my 6 doses of migraine medicine quickly.... The doctor told me my sinuses were inflamed, and that I had been holding an infection at bay with a saline solution. She prescribed more migraine meds. I added a humidifier to the house and have not needed the med since. Reaching here, but what is the humidity in your home?

  3. Nice to meet you :)


    I was fortunate to have general practitioner that caught the auto immune signs right away (severe fatigue, swelling, chronic fever, night sweats, and joint pain), but I was also a poster child for signs and symptoms at that time too... I should have gone earlier but I did not know any better. Glad you know what to look out for but rest easy, as you don't need to worry yet.


    It was a very hard wait for my referral, then the wait for tests to come back after that, I think most of us here understand what you are going through, hang in there darlin' !


    As you stated in your first post:

    -For 1 year already I have been having night sweats, got a bit better with thyroid medication

    -Raynaud's (diagnosed) and chilblains in cold

    -Numb hands and feet at night, or when I cross my legs etc

    Those are all good signs in my mind that you are not sick. You may never develop anything despite you bloodwork results :) Many women test positive but never become ill.

    There are a couple hundred autoimmune diseases that can cause false positives for other antibodies, many never develop :)

    I should also add I had 3rd degree frostbite and was diagnosed with chilblains a day later, and it was not, but instead Raynauds in cool weather. Not cold weather, but only cool weather.

    I know this is a scary time for you, post here and we will help you through it!

  4. Ronald, I hear those when I wake up while sleeping during the night.  Sometimes I cough and that fixes it, other times I turn over and that helps, and once in a while I fall asleep with them.


    I have mentioned that to my doctors.  They say my lungs are clear.  Interesting things friend.

  5. Thanks Ron,


    So nice to meet you :)  Today it's a bit better.  Hemorrhage  is healing, other eyelid less swollen, and head draining less than yesterday, I am hoping to blame this on a cold virus.  


    I was prescribed anti-inflammatory eyedrops and restasis last summer, but I had one cold after another including over a month of laryngitis.  Yep, nothing more than a whisper for like 5 weeks.  End result, I never used the eye meds.


    I am ready to use them after this, hoping things clear up more tomorrow.  Less swelling in the other eyelid today had revealed a small red protrusion near the inner corner.  Going to wait it out til Monday when the opthalmologist is open while hoping its better, as getting to and from town is large task for me.

  6. I woke up yesterday with a swollen eyelid.  No bonks, or bumping into it.  But I do remember that eye being itchy that night and rubbing it.  


    Today, thought it would be better, but wasn't.  Instead, same swollen eyelid and now the left eye has a hemm on the outer corner.


    No idea why, no pain.  I do use eyedrops frequently.  And I did vomit the day before, after taking my morning meds but assumed a broken vessel would have shown yesterday.  The only other thing I can imagine is coughing during the night.  I have no idea, it's not painful, but baffled as none of the above I mentioned is out of the ordinary for me.


    I will add, my ears have been a bit congested lately.......  I don't think I have a cold, any ideas?



  7. Hi,


    My diagnosis started with my primary care physician, positive ANA with symptoms....Though many women have tested positive for that and not become ill.  He referred to a rheumatologist.


    My rheumatologist sifted through my symptoms and ran another battery of tests and started me on the correct medicines.  I might guess your next step is to get a rheumatologist, were you referred already?

  8. Margaret,  I have stopped taking plaquenil twice.


    Both times I regretted it.  It keeps my 24/7 and 365 fever below 100* and helps my joints.  I remember being asked by doctors if it was helping and it was hard to tell.  For sure after stopping I can say it was helping.  I also read it can take 3-6 months to become effective again when starting or restarting.


    It doesn't do anything for my severe fatigue, but I appreciate the two benefits above. :)


    Only you can make the best decisions for your son, we all know how much you love him.  I know this one would not be one I would eliminate, but Gareth and I are in different situations.


    What else is there that could make a difference for him?  I love Shelley's and JudyT's suggestions; when can you give them a try?

  9. Can't say for sure, but it appeared to me that they just wanted to verify one was still truly disabled and not able to earn an income, and to verify SSDI recipients are not defrauding by collecting disability while earning an income at the same time.  

  10. Grey,


    I was told from the beginning it was Diffuse but only had a few shiny patches near my knuckles, though all the other symptoms (all my joints blew up, Raynauds, severe fatigue and unrelenting fever) that got worse over the years).  Now 6 years later the shiny patches are starting to spread, though it's only on my knuckles and part of the top of my hand, and I have odd spots on my face.  My upper lip is distinctive IMHO, and though I can see I am aging quickly in my 40's, my face looks younger than others my age except for the prednisone chin LOL LOL! I have some other weird spots but I assume it's part of the disease.


    I am over due for Pulmonary Function tests and Echo but a few years ago I was told my Diffuse was behaving as Limited. 

  11. Sara,


    I have the best Rheumatologist in my area, and also consulted with a "Scleroderma Expert" the first few years, and neither of the them looked at my nail capillaries.  I have to wonder if that is practiced more in Europe?  Hope that helps.

  12. Hi Kathy,


    The expert said his ANA was *speckled pattern with diffuse cytoplasma*, consistent with scleroderma.  I haven't checked into that for years, so maybe those criteria have changed.  Very little is published about the + Anti-RNA Polymerase antibodies, too, except that he's more susceptible to renal involvement/failure.


    Have a good day, Everyone.




    Margaret, somehow I have conveniently forgot alot of things I studied years ago, thanks for looking it up :)  AND, I was given 3 different results from 2 hospitals back then, no wonder I am still confused LOl.

  13. Sara,


    Not sure we are talking about the same thing, but I wonder if this is similar:  I had Raynauds for at least a decade before I knew what it was.  It's different now, but in the beginning I would get episodes of skinny, pale (ghost white) hands or feet followed by swollen, red, angry hands or feet.  The "red" phase made my hands, feet (and ankles and wrists...) sting and burn.  It almost looked so swollen & sunburned that was about to spilt open.   But, I never had it on my forearms.  I do however have very splotchy skin on my arms and legs that I assume is from sun damage in my youth, and the use of steroids for alot of years now.  What does your doctor think?

  14. :sorry:   I had a pillow for breastfeeding a few years ago, it's a donut shape, but it can be spread out to more of a horseshoe shape,,,,, dear husband puts around his neck and naps upright in a chair LOL.  I wonder if that may be of some comfort for you on your wooden chairs?  Put the pressure on your perimeter while supporting your lower buttocks?  PM me for a popular brand name of them if you are interested.



    Also, sorry for the TMI, PM me on this as well if you like.  Are these close to the rectum?  I have had more frequent problems there the last few years and its getting uncomfortable.  Too long of a story why they have not been actually seen, but my last OB said some people are more prone than others and guessed they were abcesses, I am not sure they actually are...


    Interested on an update from you on the Vit D Shelley mentioned too:)

  15. Hi Sara


    Welcome to the forums. I've been on for about 8 years now because my son had esophageal dismotility, at the age of 18, and we were thrown into the world of scleroderma. His gastric doctor ran all the blood work for scleroderma and his came back with a + ANA, super high SED rate, and + Anti-RNA Polymerase 1/111. His only symptom was the esophageal dismotility and the gastric doctor said *sine scleroderma*. Well, it took forever to get into the scleroderma expert and I was panicking the whole time.....thinking he'd die very young because of some unknown, weird, off the wall disease!! They have come a long way in 8 years!! The expert said no to scleroderma, but yes to UCTD (Undifferenciated Connective Tissue disease). After 9 months of testing and figuring out what to do next, they put him on Plaquinel. It's an anti-malaria drug that is suppose to *jump start* the immune system. I never understood that explanation since scleroderma is the immune system attacking your own body!! Anyhow....it worked and within 2-3 months, his dismotility eased up and he was doing OK.


    Over the past years, he has developed mild Sjogren's and Raynaud's. His biggest complaint is chronic pain in his legs and fatigue. Oh....also....depression. His doctor told me that the same autoimmune issues that attack the rest of the body may also affect the brain chemistry. Please, do not hesitate in seeking help for depression/anxiety/sadness etc, especailly since you have a young child at home. The leaders of this forum are great and will walk you through anything. :emoticons-clap:


    Take care, Everyone.


    Mom to Gareth, 26 years old, DS/ASD


    I am a bit confused on the ANA Scleroderma. I was under the impression ANA could and could not indicate autoimmune, as well as false positives.... And that anitcentromere or scl-70 indicated which type of Scleroderma? I know my ANA pattern but did not know it was indicative of Scleroderma but rather any host of autoimmunes as well as a false positive.


    Regardless of the type of Scleroderma, I have found antidepressants to be of great help. I have tried many over the years and some helped me more than others. It was trial and error for me to find the best one, especially when I took birth control pills. There are even some antidepressants now that help with pain.


    I would first find out if you were tested beyond ANA as many have this without being sick, and then find out which anitbody is positive. That would be much easier to navigate.