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Lower Eyelid problem?

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Old 09-10-2018, 05:41 PM   #11
AnnieB3
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No, if doctors test for RA, they do not necessarily test for lupus. Do you have all of your past test results? There are tons more tests for lupus. Do you ever have a rash after being in the sun, or feel tired/weak after doing so?

Too bad you can't go to MN. The best rheumatologist is there (Jody Hargrove). She wouldn't pooh-pooh you.

A sed rate of 130 is very high. In fact, the chance of something not being seriously wrong at that level is zero. Whether that is inflammation, infection, or cancer. My money is on an inflammatory disorder (not that I have any!).

Ask around and find out what rheumatologist is good in your area. When you find one, keep things simple. Don't be combative (no offense). Just ask them to help you. Don't say what you think might be wrong. Tell them only your basic symptoms.

I wish I could help more. I hate when people don't get the medical care they deserve!


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Old 09-10-2018, 10:41 PM   #12
winic1
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No, if doctors test for RA, they do not necessarily test for lupus. Do you have all of your past test results? There are tons more tests for lupus. Do you ever have a rash after being in the sun, or feel tired/weak after doing so?

Too bad you can't go to MN. The best rheumatologist is there (Jody Hargrove). She wouldn't pooh-pooh you.

A sed rate of 130 is very high. In fact, the chance of something not being seriously wrong at that level is zero. Whether that is inflammation, infection, or cancer. My money is on an inflammatory disorder (not that I have any!).

Ask around and find out what rheumatologist is good in your area. When you find one, keep things simple. Don't be combative (no offense). Just ask them to help you. Don't say what you think might be wrong. Tell them only your basic symptoms.

I wish I could help more. I hate when people don't get the medical care they deserve!


Annie
I do get sort of rashy or splotchy red after being in the sun, and tempted to scratch a bit (but I mostly don't, I'm good at resisting). I'm very fair skinned, and burn easily, but this has been different the last couple years. I figured it was one of my medicines doing it to me. I do have many of the symptoms of lupus, but they're also the symptoms of many other diseases, none of which are any better choices.

That one time the sed rate was 130. Four to six weeks later, when I got tested again, it was normal. I often think that my levels "sputter", going up and down irregularly, but so things get bad, I finally go to gp, which sometimes takes a week or more to get appointment, then he orders bloodwork but it can take more time for me to be able to get to have the blood drawn (I can no longer drive, there's no public transport here), he says go to specialist, it takes weeks to months or more to get in there, by then things are different, and they toss me aside.

There are no good rheumatologists here. There is one group in the area, owned by the hospital corporation. That's the appointment I have in four months, the day before Christmas. Next choices are an hour's drive away, and I can't drive and volunteers rarely will go that far. Hubby can't keep taking time off work, even tho he uses his vacation time it looks bad, and his company has just undergone a merger and is moving people all across the country in the next year, which is why we will be going to North Carolina (from Connecticut), unless they decide we are more of a liability than asset.

Lupus is possible. Polymyalgia rheumatica would fit much of this, too. Synovitis/synovial inflammation. MG. lots of things. all autoimmune, all rheumatic, and gee, all begin basic treatment with steroids, and yet no one will consider doing anything without a positive lab report.

When at the gp this last time, I asked that he write the rheumy a note telling him why I'm being referred there, so that I don't have to explain it (since they won't listen to a patient anyway) and instead of saying, "tell me if its RA" or whatever, say "can you figure out what it is" because with the "tell me" approach, they just say yes or no, and if no, it's "no, so go away" rather than offering any other ideas. GP said, "it doesn't work that way" meaning he can't send me to have "mysterious, probably rheumatological problems" examined. They have to send for cause. This corporation has things so screwed up.

A couple of times, my back pain got so bad the gp gave me a 6-day Medrol pack, methylprednisone, in steadily decreasing dose (6 pills day 1, 5 pills day 2...) and those first 3-4 days I am in heaven! Superwoman! Nothing hurts. Nothing is weak. Breathing isn't hard work. I can walk, I can talk, I can use my arms, I can even sleep.....then as the dose lowers it all comes back and by the time it's done, I'm back to being me. The first time, it was wonderful, it was like a vacation from being me. The next time, it was horrible, as I knew how long it would last, and when I got to the end of day 4 and everything was beginning to return... it was just cruel knowing I could feel better but had to give it up again so quickly.

Somewhere I have all the lab reports. I used to keep an orderly notebook, but when it got to be 4" thick and no one was doing anything anyway, I just sort of shove things into the bag that holds it and forget them. The corporation just switched to a new portal system 5 months ago, and it's all screwed up and doesn't have any older info available anymore. As well as, I don't know what they did to my records, but they have become a complete fabrication and fantasy story with this change. Going to be a nightmare trying to get it all straightened out, I think they crossed my info with another patient's. I asked for a printout of the portal info so I could write down the corrections, they couldn't do that, but offered me the form to request a copy of ALL of my records (I've lived here since 1988). Um....no. Not helpful. My arms are too weak to lift it and my eyes are too screwed up to read through that much.

I guess I will find out what newest rheumy thinks, in late December. This is an older doc, supposedly a very good diagnostician, and he has an ego bigger than the earth can hold, so hopefully he has enough confidence or arrogance to disagree with or disregard what the other rheumy's in the office have said in the past. At least my gp didn't order any bloodwork be done first, so I don't go in condemned by that this time. It being the day before Christmas, hubby is off work and he will come with me. And I will be a good little girl and behave myself. We only roll our eyes and make fun of the idiocy after the doc has left the room.
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Old 09-11-2018, 10:48 AM   #13
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So, it gets worse. Just got back from one of my ophthalmologists.
Last week the muscles of one eye, the same one with the lower lid sagging, got really painful. Worse than ever and persistent even with rest. Been being careful how much "eye work" I've been doing to keep it from getting that bad again.

Dr. says my eyes are being pushed forward again (measured). Can feel that there is no 'give' behind them. Being sent for a CT scan next week. Could be a cyst, could be thyroid, could be who knows. If it's not a specific 'thing' back there filling the space and pushing outward, then I may need to have 'more room made' by having the fat behind my eye(s) removed surgically. I am sure that is horridly no fun at all. And then there's my tendency to scar excessively, and for a long time, after injury/surgery.

I'm kinda completely freaked out right now.
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Old 09-11-2018, 11:52 AM   #14
AnnieB3
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Don't freak out! If you have any kind of tumor, they are usually benign. If not, most are operable.

The inability to heal tissue is another sign of Ehlers Danlos.

EDS Types | The Ehlers Danlos Society : The Ehlers Danlos Society

Whatever is going on with your body, it's not nothing. And there might be more than one thing, so I hope doctors keep an open mind.

Please just take good care of yourself! I hope the scan goes well.


Annie
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Old 09-11-2018, 12:47 PM   #15
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Oh, I heal, and heal, and heal.......I get hypertrophic scars, and keloid scars. Big, thick, invasive, persistent. Not atrophic like is described for E-D.

I also have about zero tolerance for pain killers. Anything stronger than aspiring, tylenol, and ibuprofen, and I am a sick, dizzy, nauseous, horrid puddle of misery curled up on the couch, unable to lift my head or get to the bathroom without someone pretty much carrying me. Sometimes with migraines as well from certain painkillers.

Head/eye socket surgery is NOT going to go over well. Let alone I get so sick from even just twilight anesthesia--could be a week or more of dizzy and nauseous, and sometimes I start itching all over, too, and I also can't take antihistamines as I react badly to those, as well. Had glaucoma surgery six months ago, insertion of a drainage stent, and I did that fully awake, with just topicals, to avoid ending up so sick as usual. For "same day" surgeries, that most people go home an hour later, I run about 50% I make it home that day, but not until about 8 hours later, and 50% end up in the hospital overnight because I am too sedated and/or sick to be released. For the eye, the anesthesiologist was standing right there, ready to fill me with her crap at the slightest excuse, so I focused on the beeping of the heart rate monitor and on keeping it steady while the doc put the clamps and injections and then the device all in my eye, so I would stay perfectly calm and not give the anestheologist any chance to make me sick. If nothing else, just for spite for the big argument she put up beforehand about how I had to have something (doc had agreed to do it with only topicals, but anesth was having a fit over it) until finally we had gotten to the point where I shouted, fully shouted, "I SAID NO!!!!" at her, and since the whole place heard it, she had to concede.

No matter what, short of a miracle where whatever it is just miraculously vanishes, there is no good end to this.
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Old 09-11-2018, 10:34 PM   #16
AnnieB3
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If you have a CT, you might want to consider refusing the contrast (usually iodine). If you have such extreme reactions, that would not be good. Iodine can make MG patients worse.

Not all scars for E-D are atrophic! Don't make assumptions. Some people have the thick type you describe (aka adhesions).

Rach, who hasn't been on her for quite a while, has E-D. I wish you could talk to her about this. She's an expert, I'm not.

You have to have hope, okay? The point is to figure this out, and then treat whatever is going on.

Annie
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Old 09-12-2018, 06:28 AM   #17
kiwi33
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Winic1, I have been reading along here and hope that it is OK if I make a suggestion.

One way of helping to diagnose auto-immune diseases like RA and SLE is to run an anti-nuclear antibody (ANA) test.

There are two parts to it. The first is to measure the levels of ANA in your serum. The second is to observe the staining pattern of your ANA in the nuclei of cells from a human cell line; different auto-immune diseases tend to show different staining patterns.

Neither part of an ANA test is definitive (both false positives and false negatives are known) but if your serum ANA levels are abnormally high and you have a characteristic staining pattern then more detailed investigations would be a good idea.
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Old 09-12-2018, 01:16 PM   #18
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Winic1, I have been reading along here and hope that it is OK if I make a suggestion.

One way of helping to diagnose auto-immune diseases like RA and SLE is to run an anti-nuclear antibody (ANA) test.

There are two parts to it. The first is to measure the levels of ANA in your serum. The second is to observe the staining pattern of your ANA in the nuclei of cells from a human cell line; different auto-immune diseases tend to show different staining patterns.

Neither part of an ANA test is definitive (both false positives and false negatives are known) but if your serum ANA levels are abnormally high and you have a characteristic staining pattern then more detailed investigations would be a good idea.
It was the ANA that was barely positive, and the staining patterns showed some stuff. This was in the blood tests run after there was that weirdly high SED rate. First rheumatologist I was sent to said no, it didn't count.

SED rates have been in normal range since then. Don't think they've run another ANA, if they did, it was normal. My bloodwork is always normal, except for the abnormally high number of red blood cells of abnormally small size--the thalassemia minor.

My bloodwork says I'm healthy as a horse. But the damn horse keeps trampling all over me.

Not
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Old 09-12-2018, 04:31 PM   #19
AnnieB3
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Can you dig up that ANA?

A positive ANA is not nothing, along with a sed rate of 130! Good grief. Don't see that rheumatologist again.

The thing with lupus is that it can come and go, depending upon exacerbating factors. Some people have signs all the time though. Test results can also be positive and then negative. Those tests are best to do when someone is in a flare. I volunteered for the locus lupus foundation, which is why I got to know the disease so well. Well, that and a couple docs thought for a number of years that I might have it (don't).

You can do things with your diet that would help inflammation. Are you interested, or have you already made adjustments?

Thanks for bringing that up, Kiwi. I know she mentioned that before but it's a few posts back!

Get those results and share if you can! You need a very good rheumatologist.

Annie

Last edited by AnnieB3; 09-12-2018 at 07:09 PM.
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Old 09-13-2018, 07:18 AM   #20
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Can you dig up that ANA?

A positive ANA is not nothing, along with a sed rate of 130! Good grief. Don't see that rheumatologist again.

The thing with lupus is that it can come and go, depending upon exacerbating factors. Some people have signs all the time though. Test results can also be positive and then negative. Those tests are best to do when someone is in a flare. I volunteered for the locus lupus foundation, which is why I got to know the disease so well. Well, that and a couple docs thought for a number of years that I might have it (don't).

You can do things with your diet that would help inflammation. Are you interested, or have you already made adjustments?

Thanks for bringing that up, Kiwi. I know she mentioned that before but it's a few posts back!

Get those results and share if you can! You need a very good rheumatologist.

Annie
I remember it was barely positive, like if the limit of normal is 1:40, then mine was 1:80, whatever one step past normal is. There were two staining patterns noted and described pretty sure one was speckled and maybe some nucleolar also? I think that's what I remember, having just now looked up the names to jog my mind.

The high SED rate and the borderline ANA came at different times, different rounds of blood tests. I don't think the ANA has been repeated, or else it was just once and was normal that time. Sed rate went back to normal.

Late this spring and summer, everything was just awful, worst ever. No one wanted blood tests. Now it's calmed down somewhat, or I've just gotten used to it and adapted, or I think of it as "absorbed" it, take it as the new normal and reset the scale to "this is zero" and only note or acknowledge pain and/or problems above and beyond where I am now. Will see a different rheumatologist in 4 months (their next available appointment), which will be 7 months after this most recent, worst round of pain and problems. So, who knows what, if anything, will be going on then, and I expect to get turfed again.

I would be interested in hearing the diet changes. Not really capable of looking things up myself right now, with the ongoing and progressive eye problems. Places like this site, I can blow up the screen really large to read, it works. (hold ctrl and scroll up to enlarge, scroll down to shrink it back down, or hold ctrl and hit + repeatedly to enlarge, - repeatedly to bring it back down, and ctrl 0 (zero) to get back to normal when you've gone up and down so much you are lost) But many sites don't work well with being enlarged, have bad fonts and/or colors, are difficult to navigate because if I don't know where the buttons/clicks are I have to look around for them and looking around doesn't work hardly at all for me right now, and then reading new info with all the rest of the difficulties it just doesn't "go in" (think of it as trying to hear complex directions while in a very noisy, crowded, busy room where you are being jostled around while trying to hear the directions shouted over the noise of everyone else shouting directions at each other) and I have to go over it over and over but that makes eyes and head hurt ....

So anyway, yes, if you could give me some simple guidelines to start with, that would be great.
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