Lower Eyelid problem?
 

I don't really have much problem with ptosis of my upper eyelids, but recently my right lower eyelid is sagging down and away, especially at the outer part (farther from nose part), especially later in the day or after working on the computer (making my eyes work, which they generally don't do well).

Any chance this could be an MG thing, or am I developing yet another eye problem to add to my collection?

There are muscles below the eyes as well. If the lower eye muscles become worse after an activity, as you said, then they are fatigued from MG. So, yes, this is probably MG!

It wouldn't hurt to be checked out by an eye doctor, if there is a change in your vision.

Some eye changes (i.e., larger eye area) can be from Grave's disease, for example.

About two weeks after my MG crisis, I was putting some makeup on for the 2-week followup. I was holding a mirror with my left hand for only about 5 minutes. My left hand contorted so badly that it didn't recover for quite a while. How MG affects us depends upon the relative stability of our condition plus the intensity of whatever activity we are doing and for how long. Sounds like a mathematical equation, but MG is not predictable. :cool:

You could try having a small fan (like the Travelon ones that sit on the table or can be handheld) blowing on your face while at the computer. Also, turning down the light on the computer might help. If you can, rest your eyes periodically.

I hope that helps.

:grouphug:
Annie

I practically live at my various ophthalmologists (since they specialize, I have one for each problem....). If they gave out frequent flier miles, I'd be traveling around the globe for about the tenth time by now. If they gave out toasters and blenders like banks used to, I'd have a warehouse full. During one phase, I was at the office so often we were joking about them giving me one of the small rooms in the back to live in.

Will be calling them tomorrow. Same eye is now acting so overworked, that the muscles on top are sore. Sore to the touch, not just movement. Gets better with hours of rest, as in patch the eye closed, but that's not so good for doing everything else in life, as this is my dominant eye and the other eye has distortion problems as well, and my balance is not good to begin with, and....

Just a barrel of fun, isn't it.

No, MG is definitely not fun. And even when MG is stable, the disease can still surprise us. I'm glad you have eye doctors who help you!

There's only so much that can be done with the eye muscles in MG. Some people on immunosuppressants don't have issues. Pred only does so much, and hurts so much more. When the eyes are worse, that's a sign that MG is worse elsewhere.

Also, due to the pressure on the eye, you might be prone to retinal issues. So I hope you will seek out care if you see any floaters.

I know this sounds like a broken record, but if you haven't already had your B12 checked, please do. Sore to the touch sounds like a nerve issue (or inflammation).

Is the balance issue from MG? Might you have something else going on? Don't assume all symptoms are from MG. :cool:

I wish I had never heard of MG. Sure, some people do great. But its the unrelenting nature of this illness that is so hard to cope with day in and day out. A great attitude helps. But that's kind of like being in denial! ;) I'm grateful there are people who are unaffected by MG. But there are a lot of people who continue to struggle. (Rant over).

I hope you will find some relief!

:grouphug:
Annie

The slightly dizzy/balance thing started long ago, and after extensive, very unpleasant testing, they concluded it's in my brain, not my ears, not my eyes. So sorry, nothing to be done, go have a nice life. Combine that with weak muscles, and mysteriously swelling, self-spraining, painful, tendon-splitting, failing joints (but not rheumatoid arthritis, blood tests don't show it) and wonky eyesight, oh, it's a barrel of monkeys worth of fun.

I've got five 60g pills of mestinon a day. That's it. Neurologist won't give any more, won't do anything more. She doesn't even know (her own words) if that much is safe. (Yet then she tried to switch me to two 180mg ER pyridostigmine a day, which, of course, didn't work well. Um, Doc, 5x60=300mg, but 2x180=360mg, so how can you think the first is too much and unsafe...??!)

Mestinon works. Miracle drug for me. It works. Casual acquaintances comment on how much better I look when I am on it. But....

Officially, I am not even diagnosed. She won't call it MG because I don't have a positive AChR or MuSK, and nothing really shows on the EMG. She's never heard of LRP4, nor is she interested in looking it up, because I've told her about it twice so far, and she just says "I don't know anything about that."

She sent me to a fancy neurologist at an Ivy League university health system nearby, to have him do the diagnosis. Only, he won't diagnose without a positive test on something. He won't speculate on what else it could be. He won't explain what else it could be. He won't tell me even IF there are other avenues to investigate if the LRP4 test comes back negative. He won't tell me IF there are other doctors or places he'd recommend I go to if he decides it's not MG. When asked what it could be if not MG, he puffed up and variously spouted things like, "I'M just a consultant" (since first mentioned neurologist sent me to him for diagnosis) and "Well, this IS the MG research center" (meaning for MG only, and ONLY MG, nothing else.) I still have to fight the LRP4 test through my stupid insurance before I can get it done, and I haven't even started. Fancy neurologist is a jack*ss of extreme magnitudes, and I'm not going back to him. (you had to be there. Unreal. not worth the effort of another trip, let alone I'm not letting him make more money off me for doing nothing.)

Besides, I never test positive for anything. never. No matter how many symptoms, no matter how well it fits, nothing ever shows up in my blood. Never. According to my tests, I'm healthy as a horse. If only that damn horse would quit kicking me so hard....

In five years, last kid will be out of college and I'll be able to save up to go to the Mayo Clinic or the Cleveland Clinic and have them figure me out. In one year, we will be relocating 700 miles away because of hubby's job, and maybe there will be decent doctors there. Can't be any worse.....

Eye doctors here are mostly good. Going to miss them when we move.
Had glaucoma surgery on one eye in February, still on steroid eye drops because I have this insane tendency to scar, and scar tissue will destroy the glaucoma surgery. Doc said this past month that finally the scarring is decreasing. Come back in three months, still use the steroid drops. Oh, and you are getting a cataract in that eye that you should consider getting done in the next year. No kidding, six months plus of steroid drops will do that to you. But cataracts make cloudy, duller vision, and are easily handled with simple surgery. Glaucoma makes the lights go out, permanent blindness, permanent blackness, so....an accelerated cataract is just fine with me.

Will remember to call eye doctors (not sure which one will handle this, specialists are SO picky) in the morning. But several hours of complete rest by taping it shut worked wonders on the muscle soreness. So, probably I'm just fine. Fine and dandy, that's me. I got no problems. Except my attitude. I'm told I have a really bad attitude towards doctors. I tell them that's that how I get by, living on my really bad attitude. They don't quite know what to make of that... :D :D :D

I'm sorry if you've already been round and round this block, but have you explored the possibility of Ehlers-Danlos and POTS? I don't know whether there is a correlation between those two, but I have heard them connected with each other before--and also with MG or MG-like symptoms. When you said dizziness and balance issues, and then mentioned self-spraining joints in the next breath, that's where my mind went.

Abby

I have a decent cardiologist, so no POTS. The slight dizzy thing started well over a decade ago (maybe 12-13 years ago?), the joint self-destruction just two and a half ago. As far as Ehlers Dansos, no one has mentioned it or looked into it. My bloodwork is fine. Around here, when your bloodwork is fine, you are fine. Seriously, if there is nothing wrong with your bloodwork, the office has a nurse call you and tell you that your bloodwork is fine. Period. If you ask, what about my symptoms/pain/problems/etc, if you have a good nurse, she says, oh? are you still having symptoms? you can make another appointment if you want.... If you don't have the good nurse, you get, the doctor just told me to tell you your bloodwork is fine.

Went back to my gp last week, since one of the specialists he sent me to was actually a human being, but what he usually does didn't help at all (physiatrist who believes in supplements and pt) and so that doc had called and talked to the gp, who was supposed to call me, but didn't, until I followed up and got the oh? you are still having symptoms? you can make an appointment....

GP told me that I was beyond his expertise and that's why he kept sending me out to specialists. Only, all they do is read your test results. AND...if doc sends you to specialist saying, tell me if it's mg, the specialist will only decide yes or no. period. doc sends you out saying, tell me if it's rheumatoid arthritis, specialist looks at bloodwork for RA only, (up to 38% of people don't test positive for several years, during which joint damage occurs) and says no. (my fingers are now starting to go crooked, so bloodwork or not, maaaayyyybeeee....only they booked the next available appointment, for December 24th. Four months wait. Which is better than trying for an endocrinologist around here--7 months or more for them.) Ankle doctor said he thinks I have synovial inflammation, but without a positive bloodtest or a big swollen ankle he can stick a needle into to sample fluid and get a positive test, no diagnosis, no treatment. Which would fall under the rheumatologists, but they were only asked about RA and so won't look for anything else unless I go back with a new referral for a new potential disease and then they will evaluate for that one only, but my bloodwork is always fine. And my gp made it very clear he doesn't want to see me for any of this difficult stuff anymore.

I don't even HAVE mg. No positive bloodtest, no positive emg (which I now understand is possibly because the room was freezing cold, so cold that even under the blanket they gave me, I was cold.) So no one will diagnose it. Pyridostigmine works. IT WORKS. All the symptoms fit. But their little computer system doesn't have a box to click for "seronegative mg", so I have nothing in my records indicating that I have MG or that I potentially have MG. And the last few weeks, muscle weakness is getting worse, eyes are getting worse, and breathing is getting harder. I am getting worried. And when I end up in our little local ER, they will kill me. Pretty good chance of them doing that to any patient, anyway, let alone someone unique and hypersensitive like me.

In a year, we are moving to Charlotte, NC. Hoping for better doctors there. In 5 years, last kid is out of college and I can save up to go to the Mayo clinic or Cleveland clinic. Just gotta make it until then.

Okay, so started looking it up. My joints have never been hypermobile, not in the least. With the most recent ankle thing, the doc said my bones were beautiful, actually, and there was no looseness at all in the ankle. They are just swelling up and getting extremely painful, over NOTHING. Have had a tendon or two split DOING NOTHING, unless lifting my arm off my lap into the air is doing something worthy of splitting the ECU. The first big ankle problem, where I ended up in a boot for a month, having done nothing to it, the docs all swore that I actually had injured it several days before without realizing it, and it just waited several days to swell up and get sore. Really. That was their story and they're still sticking to it. Isn't it great to know that you can badly sprain your ankle, but not feel it or have any pain or swelling or indication of injury until four to seven days later?

I am not making this stuff up. When the latest corporation to buy out our hospital and medical systems moved in, all the good doctors left. Left the state, really. The ones left are the ones who couldn't get new jobs, or disrupt their families. The corporate rules have them clock in and out their patients, and they get disciplined if they waste too much time on treating people. They are not allowed to change or contradict a coworker (I got that straight from a manager's mouth when she called to cancel my appointment with another doc in the same group as one I had seen already but he was such a jerk I wanted another, nope, not allowed), so there's no second opinions or review of anything. Not allowed to diagnose without confirming lab work. Not allowed to refer to doctors outside the system unless there is no equivalent doc owned by the system. Not allowed to diagnose something that isn't coded in the system, like sero-negative mg. It just sucks.

Good thought, Abby.

I was wondering about lupus or Lymes. Have you been tested for those?

Annie

Been tested for Lymes many times. I would assume Lupus testing is all those same things that go with looking for RA.

Once, about a year and almost a half ago, my sed rate was really high, 130, for no good reason. And once, the rheumatoid factor thing was just barely positive, and there were results/description after the sub-tests/breakdown things they do, talking about nucleus appearance or something. But after that, everything is fine. My bloodwork is always fine. I'm healthy as a friggin' horse.

Although--I have thalassemia minor, where you are heterozygous for thalassemia, so you carry the trait but with no problems, other than your red blood cells are smaller than normal, but you have more than normal of them, so it all evens out. I'm Italian on my mother's side, and other family members have been found with this, also; so doctors have never officially tested for it, they are satisfied that's what it is. And I have long wondered if maybe the slightly funny blood composition from thal minor might have some effect on the other results, so that you get the false negatives or close to but not quite out of range results. But I haven't been able to find anything about that, and I'm having such eye problems that I really can't go looking for info.

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!

:grouphug:
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.

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.

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.

:grouphug:
Annie

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.

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

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

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.

I'm having a really hectic week, so I can't go into diet right now (will soon).

You have a primary doctor, right? Have they done a urinalysis lately? If you have symptoms, having a UA can be revealing if you have lupus or other connective tissue diseases.

Urinalysis Test for Lupus : Physical, Chemical and Microscopic Analysis

If you have rashes on your skin after being exposed to the sun, a dermatologist can do a biopsy.

Is no one really thinking about symptoms here, or what to test for? Doesn't seem like it.

Annie

No, I don't really have a primary doctor. Second to last visit, he just really blew me off, which was a shock because he's never been like that before, not as a doctor and also since we've been with him for 18 years and our daughters went to preschool and kindergarten together, and are in the same high school. Last visit I only went in because they were supposed to follow up on a call from the physiatrist they had sent me to, but rather than tell me anything over the phone I had to go in, and he just said that I was beyond his expertise, beyond anything he could do, and that's why he just keeps sending me to specialists. He made it very clear that he could not, would not, do anything other than send me back out.

I asked him if, on the referrals, instead of saying something like "is it RA?" because then I just get a yes or no answer (and it's "no" because I don't have a positive blood test for anything) he could just say, "figure out what's wrong with her" and he told me "It doesn't work that way."

I have asked the specialists, when I am there, "well, if it isn't MG/RA/Thyroid/whateverthelatest, then what IS it?" and gotten in reply, "I asked to decide if it is X or not, and I say it isn't", end of discussion, end of visit, end of story. Really dysfunctional, restrictive system they are working under, since this last corporation bought the hospital and almost all of the doctors in the area.

So, no, I don't have a primary doctor, not for anything more than a cough or a sore throat. I see my next specialist, rheumatologist again, on December 24, at 2:00pm. If I tried for an appointment with the endocrinologist, it would be a 7-9 month wait, as they are, and have been for several years now, very short-staffed on doctors, because nobody new wants to come work in this area under that corporation. My neurologist isn't very good at all, she is not up to date on MG or much else, and has no interest in getting up to date, but she's the only one who would take a chance on giving me the pyridostigmine, and since it works she's still writing the prescriptions, but told me she won't go over the 5 pills a day, and nothing else. Will NOT discuss any other potential neurological issues, like the eyes or headaches or anything. Not interested.

A year from now I should have moved halfway down the east coast to a new area, and just have to hang on until then, as we are counting on there being better doctors in the new area. Can't be any worse.

Do you have an urgent care facility? Work the system. I don't encourage not being honest, but you could go in on off hours and say you think you might have a bladder infection. They have to run a UA then. ;)

December is not too far away, but this is ridiculous healthcare. I'm sorry.

Annie

There is no health possible with this system, and the word care has been not just abolished but completely obliterated from use or memory.

But they give themselves awards for meeting business practices standards and product throughput. Oops, I suppose that should be patient throughput.
Poke'em, Pill'em, Bill'em, Bye.

winic 1, You don't know until you try (this latest suggestion).

First, I am not a nutritionist or a doctor. These are only my views. You should consult with a doctor and/or nutritionist (and do research) before starting any new diet plan!

The book "Grain Brain" is brilliant. Grains are not that good for us. There are vegetable-derived noodles, such as Miracle Noodles, that are a low-carb alternative to grains.

Foods that are inflammatory are beef, pork, dairy, and sugar. Anti-inflammatory foods/spices are many, including tumeric, cinnamon, mushrooms, vitamin c, berries, vegetables (dark green ones), and so much more. Drinking lots of good water is very important to flushing toxins out of our bodies. Lyprinol is thought to be a great anti-inflammatory (made from mussels), and good for arthritis. But not enough trials have been done.

https://www.hindawi.com/journals/ecam/2011/307121/

If you have lupus, you shouldn't have alfalfa sprouts. They contain an amino acid called L-canavanine, which can increase inflammation.

Having good proteins throughout the day, very good vegetables, a small amount of fruits (since even natural sugars can cause inflammation in some people), good fats (walnuts, olive oil, olives, etc.), and foods low in starchy carbs is a great food diet to stay healthy. Again, just my opinion.

You need to make sure you have plenty of B12, folic acid, and vitamin D. If you eat like the above, you don't need dairy for calcium and calcium supplements. But knowing your baseline electrolytes and vitamin levels is a good idea.

That's about all I have right now. I hope others will chime in.

Please don't tell me that no one will help you. You just haven't found them yet. More than likely, you have red flags all over your chart. Doctors get scared when patients are upset. So pour on the sweetness!

Annie

Thanks for the info. Not so far off how we eat anyway, or try to.

Hubby's father has been in the hospital for two weeks. Today we got word that there is nothing more to do other than call in Hospice. Hubby just left to drive to his brother's house an hour away, then very very early morning they are driving to a New York airport and flying to Florida to meet up with their other siblings who are also flying in. Hubby and this brother can only stay until Sunday, but at least they get a chance to say goodbye. Dad is almost 92. Their mother has middle-stage alzheimers, and now has to go to memory care, as the assisted living place they are in is not set up to provide the supervision and care she needs without Dad there. She's only 78.

I have a 16 year old who doesn't drive yet, who is in school all day and then dance classes after school until evening (going to be a professional dancer, so dance is important), and a neighbor who will help out with rides and whatever. Very few neighbors by us, the other helpful one is out of the country right now, then there are two elderly ones and one we never see. Two dogs, two cats, two degus, and 60 birds, finches and budgies, in 8 large cages. Going to be a very rough week, mostly on my own since child is not home much and has massive homework every night (senior, taking AP classes.) Wish me luck. Tho, I figure as long as every one gets fed, and all pee and poop ends up in appropriate places or the yard, we are good. Anything beyond that is extra.