Now it's Myasthenia Gravis, whatever that is!

Oh lucky me. My rheumy appointment on Tuesday went soso. I did bring up a few things but we really didn’t decide on further treatment, such as for my feet, or now my stiff and painful neck and shoulder blade. I told him I’ll put off p.t. and try my own p.t. at home to save money. I mentioned how weak my legs get–i.e., walking from my car to his office my legs got extremely weak. If I sit and rest, I’m good to go for another hundred yards or so. He mentioned “something? myopathy”.Then he said he could send me to MAO Clinic (Rochester, MN, only about a 3-hour drive) and they’d do all sorts of tests, and whatever the results would be he’d just raise his eyebrows and say, “that’s interesting”, but there’d be nothing we could do if they came up with some answers. He said it was up to me if I wanted to go to MAO Clinic, and I told him if the answers would only make him raise his eyebrows, what’s the point? I forgot to mention my droopy eyelid and double vision to him.

Wednesday I had my routine eye exam. I told the eye doctor how bothersome it is to have my left eyelid droop, especially when I’m tired and double vision also, usually when I’m tired. She was so thorough–asking me a million questions. I told her about my weak legs. She is very concerned, and now so am I !!! She’s having a specialist look at me and run some tests because she’s concerned I have myasthenia gravis!!! She didn’t really tell me what that all involved, but the fact she was so concerned is scaring me! I’m seeing the specialist July 6. I’ve read a little about “MG” and boy my symptoms fit the description of MG symptoms.

The more I think about this, the more fearful and depressed I’m getting…and tired! It’s like the anxiety about possibly having something pretty serious on top of PsA and heart disease is getting to be too much for me! I’m so exhausted and stressed out lately it makes my chest ache and then I worry my arteries are clogging again!!!

I’m leaving for Georgia on Saturday to help my daughter move back to MN–I won’t lift anything, just help clean her apartment. I’m hoping the change of scenery will help me get my mind off myself…I know my daughter is supportive and understanding and she’ll cheer me up!

Sorry I’m once again dumping on here. I just feel like it’s been one thing on top of another…I know we’re all in the same/similar boat and you guys will understand why I’m feeling like this right now.

Thanks for listening. :worried:


Hug! I always try (and fail) to remind myself that a diagnosis doesn’t change how you feel… it only helps that you know what it is so you can get treatment…

Doctors get excited when they find a rare disease… she’s probably conflicted because she doesn’t want you to have it! But if you do she’s excited that she caught it… I work in a lab and we check people’s blood/bone marrow if the doctors think it might be leukemia… finding wrong cells is what makes the thing exciting… you don’t want someone to have leukemia obviously!!

I remember when I was an intern and they found a rare and really bad disease… everyone was running around getting more people to come and look all excited that they found it… I felt horrible until someone said the patient already has the disease… us finding it (and loving our job for it) is only helping the patient get treatment…

Anyway my point is that she’s not “allowed” to be happy that she found it… so I can imagine she seems more worried then she actually is… (imagine being a doctor and never finding anything wrong with your patients… I’m sure they would all sign up for it if it meant less people get sick… but it would be horribly boring…)


I hope that’s a joke! No way are you ‘dumping’!! Or if you are, just keep on going 'cos this is one stressful time for you. I really hope you do not have myasthenia gravis and of course you may not have it at all, but it’s good you’re getting checked out. Meanwhile, you can try to minimise the worry but it’ll be hard to avoid.

Have a great time with your daughter. Sounds like just what you need, even if it does involve cleaning!


Myasthenia Gravis sounds like the name of a woman by brother used to date!

Seriously, though, Grandma, it might be worth taking a look at the NHS Choices website about the condition. It’s quite straightforward compared to most sites. I just looked it up, and there are a couple of sentences that stood out, that might be reassuring:

“Treatment can usually help keep the symptoms under control so that people who have myasthenia gravis are able to live largely normal, symptom-free lives. Very occasionally it can get better on its own… it doesn’t have a significant impact on life expectancy for most people. In many cases, the symptoms are at their worst in the first two or three years after diagnosis.”

Regarding the weak legs, though, I think that’s something we all get to a certain extent more and more as we don’t use the damned things as often as we should. And don’t forget how tired PsA makes us too. I know when I started on the steroid course, I found that my legs didn’t hurt, but I could barely stand on them after 100 yards as they felt weak and they weren’t used to doing the exercise. I was really quite surprised how much of a problem that was.

But try not to worry too much (pot calling the kettle black, I know!). But it does sound a little bit as if your rheumy needs a kick up his “Myasthenia Gravis” if all he can offer are some raised eyebrows!


Hi Cynthia,
I agree it must make the job more interesting to sort out symptoms and test results and reach a diagnosis–I imagine it would be boring to never find anything wrong…I really appreciated her thoroughness and interest in trying to figure out what was going on. Totally opposite of how my rheumy reacted! She admitted she may be wrong (and hoping she is), but I myself think it’s a good idea to check it out, do all the tests, and know–even if she is wrong–it’ll put me at ease now that MG has been considered; it’ll be great if all the tests come back negative. I did tell her I had wore a pair of glasses for a couple years that weren’t good for my eyes because the bifocals seemed to be out of alignment and I had to strain my eyes a lot when looking at the computer or reading. I really thought that pair of glasses had weakened my left eye, but she didn’t think that was the problem at all.
Anyway, I’ve got a busy week ahead of me and that’s good–no time to worry and feel sorry for myself!
Thanks for the hug and responding so thoughtfully! I love this:


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Sybil! Not a joke–it’s actually a love/hate relationship I have with “dumping” on here hehe!! It’s a place where I (usually) don’t feel embarrassed because we all comprehend when a member is explaining their version of PsA or whatever other disease or health problems they have–it’s great to have a place where we feel “safe” talking about it. On the other hand, it seems like so many members have way worse pain and disability than me, and I am usually more sad for them and grateful I’m doing okay for the most part, and sometimes feel I shouldn’t tell all my problems!
I like it that people are so quick to offer support and understanding. There is none of that at home. My two nurse daughters right away said, mom, you don’t have myasthenia gravis–it’s so rare! And I know that–the doctor told me that, too–but if it’s a possibility because of my symptoms, then I can’t help but worry a little. It’s best I don’t show any anxiety about it at home, just like I try not to bother them about my PsA or anything else.
My daughter in Georgia will talk with me about it, though, if I bring it up–she’s very understanding. Hopefully, we’ll be having too much FUN:wink: to talk about health problems!

And “used to date”–is pretty telling about what kind of girl she was! :kissing_closed_eyes:

Ooops, hehe, I just got a message saying to consider answering in one reply rather than separate replies to each comment. Oh well, next time!
I’m getting more and more confident as the hours pass that I don’t have MG, and thanks for the information from the NHS site–it’s very reassuring! So, even if I do have it, it may not be as bad as I was thinking. My “everything” was weak before I went on Enbrel. My back was so weak for as long as I can remember–I wasn’t a long distance walker at all because my thoracic spine area would get so painful when I walked. Then I went to p.t. and did the MedX (not sure if that’s how it’s spelled) and other back strengthening things and got my thoracic spine feeling so much better that it didn’t hurt when I walked. This was after I was diagnosed with PsA but before I started treating it with Enbrel. My lumbar spine and neck as well as my SI joints continued to give me problems until I started Enbrel. My weak legs probably just are because of the PsA and my damaged back and feet–I’m sure my painful feet and having to walk in an unnatural way isn’t good for my legs, either.
Thanks for the encouragement. It helps! :slightly_smiling_face:

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The appointment with the specialist was optimistic. She is concerned I very definitely could have MG, but if I do it is mild because she performed some tests trying to weaken my eye and it didn’t happen, so that was a good thing. But, she’s very concerned about the blurred and double vision I get which usually happens later on in the day, but it sometimes happens early in the day if I don’t get enough sleep.

I had the blood draw yesterday which was sent to the MAO Clinic in Rochester, MN and the results won’t be back for at least 10 days. Unfortunately, the tests can come back negative for MG, even if there is MG–sort of the same as some of us (including me) having negative blood tests for PsA.

She said I do have dry eyes, which I didn’t know, and a start of cataracts, which I did know, and she’ll do further testing to figure out what’s causing the droopy eyelid and blurred/double vision if it isn’t MG.

Not fun waiting around for answers, and it’s hard for a pessimist to be optimistic. :roll_eyes:

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Oh gosh Grandma_J, I do feel for you!!! The waiting for results is always a nervous and scary time!!!
Keeping fingers crossed that results come back all good!!! Hugs to you

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Okay, but I’m not buying it. I think its time for a sit down with your cardiologist, specialist and Rheumy or I can refer you to a Cardio guy who specializes in connective disorders/interventional cardiology.

MG IS an autoimmune disease that first effects the eyes but as it becomes more generalized looks a lot like PsA. but here is the thing the disease is aggravated or idiopathic caused by:

  • Bright sunlight (Remember sunlight and arthritis meds are not friends they increase the effects of sunlight)
  • Surgery
  • Immunization
  • Emotional stress
  • replacement female hormones (or heavy periods)
  • Intercurrent illness (eg, viral infection)
  • Medication (eg, aminoglycosides, ciprofloxacin, chloroquine, procaine, lithium, phenytoin, beta-blockers, procainamide, statins)

Start putting tick marks by those factors and we have a description of Grandma J Do the beta blockers and Statins sound familiar??? I can’t begin to tell you what nasty meds those two are for PsA patients. Not saying they shouldn’t be used as they are life savers/prolongers but the docs forget to think about side effects and alternatives…


Looking good so far at least! I hope this turns out to be very much a false alarm.

I’ve had some odd experiences with dry eyes. Lost the plot in a supermarket. My eyesight had been blurry to start with and as I traipsed round under the unforgiving artificial light I started to feel very disorientated and anxious 'cos I couldn’t see properly at all. I purchased a tube of viscotears at their pharmacy, squirted loads in each eye, bingo - huge improvement.


Thank you, janson, :heart:️, I appreciate the hug!
Tntlamb, I always value your information because I know you’re the expert here! I will message my rheumy first about my concerns–especially that I’ve been on a statin and a beta blocker now for 10 months. The doses are really small, though–about as small as could be prescribed! I also do have some emotional stress going on lately. Maybe I need an anxiety med. I often feel like I’m “falling apart” lately, and not sure why!!! I do have tons of stress and worry about a couple of our kids, my job seems less enjoyable nowadays, I stopped drawing awhile ago, I don’t have a happy marriage–I guess I might be a little depressed.
I’ll bring this up to my docs tomorrow!!!
Sybil, I will put some drops in my eyes–it couldn’t hurt. Thanks for your reassurance. :blush:

I had to cut my comments short–my daughter texted to tell me she has rt upper quadrant pain and her hubby is taking her to the ob triage at the hospital–she’s 34 weeks pregnant (with her 5th child) and has gestational diabetes (she’s been on insulin for a few weeks now). See why I worry?
But, maybe we’ll have our 10th grandchild sooner than expected!!! In our family, granddaughters win 7 to 3!!!

Oh Grandma J I feel for you now! Huge hugs as I have been in “hiding” lately only reading occasionally because I get what you mean about feeling like the good times are less enjoyable than they should be. I find they mean a lot in the big picture or when I think back later about family time but truly enjoying the moment just doesn’t happen as much as I feel like it should.
I sure hope your daughter and the baby are okay. Try to breath and think about yourself ,(which knowing you will be hard).
Good news about the MG not being likely! I would seriously reread Tlamb’s response because it makes complete sense. I do not understand why so many doctors avoid linking the obvious PSA possibilities. The podiatrist I saw had no problem taking the “easy out” saying unless I wanted surgery I just need to keep on with my rhuemys treatment options. All of the eye issues seem so PSA related but at the same time staying vigilant and being seen by a specialist is the best route when the unknown hits. Your opthalmologist sounds very good and on top of testing all possibilities too.
Anyway, take care and let us know how things go on all fronts.

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So? How is the new grandchild? So hope all’s OK. And Grandma J please just take time out to look after you too. Hugs. xxx

Hey Rachael!!! I’m glad to hear from you! I understand you not wanting to join discussions as much, but I’m glad you haven’t left us completely!!! I hope things are at least a little better with your boss continuing to consider your PsA instead of ignoring it! I hope you’re getting some relaxation and enjoyment out of the summer, too! :heart_eyes:
Thanks for your thoughts and I’m holding on to the possibility that my eye problems are PsA-related, and that’s all. The unknown is sort of scary and hopefully the blood tests will come back negative for MG. I got some advice to increase my potassium :wink::wink: and that I did today by eating two bananas. You probably read tntlambs comment and I’m planning on messaging my docs about the statin and my beta blocker. Maybe we can change up some of my heart pills.
I miss your participation in the discussions and I’m sure others do, too, and it’s good to hear from you. Take care!
Poo_therapy, the baby didn’t come…the doctor is hoping she can hold out 3 more weeks until her 37th week. The pain apparently wasn’t her liver and her BP came down. She’s on light duty now…she’s a nurse, so I’m not sure there is such a thing in her line of work! :flushed:
I’ll take care of myself. I actually worked outside almost all day today doing various yard work, etc., and I feel good–kept my mind off icky things! I hope you had a nice Sunday, too!

GrandmaJ, GrandmaJ I missed the memo. I am SO sorry to hear that you’re into a morass of diagnostics and doctors’ best guesses. Still, it sounds like you are toughing it (whatever it is) out.

Have you been to GA yet?

@Rachael, I’ve been missing your lively contributions too. I did see the thing about the toe truck, which was funny, but not good news. Hope to see you around here a bit more (and that would require me to be around her a bit more! LOL).

Hang in there, J!

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I had a long discussion with my son about American ‘yards’. When we get together we take this kind of thing very seriously. The outcome was that we both resolved to remember that they are not miserable concrete areas with bins in - which is what a British yard is - but actual gardens. So having established that I do agree that yard work is good for the PsA etc. as well as the soul.

Very pleased to hear that your daughter is okay to hold out a while at least. You must be very relieved. And good luck with everything ! Here’s to a good summer and the best possible outcome for Grandma_J and grandchild number 110’s safe arrival. Can we have a pic of him or her when the time comes?

Hi Rachael! Great to hear from you. I often think of you and wonder how you’re doing.

Seenie haha–GA was over two weeks ago. ! I spent a week mainly cleaning her apartment while they moved everything into the truck–we drove two days to get back to MN. That was awful because my feet swelled up from sitting in the car so long–1st time that’s ever happened! But we survived…
Yep, Sybil, our yard is your garden. Our garden is a vegetable or flower area within our yard…haha I want to visit England but I doubt it’ll ever happen. Our office hired a student worker from England and I talked to her for a few minutes the other day…she loves the clean lakes all over MN and so far she hasn’t visited many other places on the US. I love her accent! We don’t have many students from the U.K. at our university, so she’s special!!!
Thanks, I’ll be fine…the fact that I feel better when I’m busy and working hard tells me I’m not too sick! (Maybe sick in the head???)
Anyway, you better be enjoying the summer and the many beach visits you do! I’ve been thinking retiring to a lake home would be fantastic (we spent 4 days at my uncle’s lake resort last week) I know our kids and grandkids would visit often!!!
I’ll post a pic of our 110th grandkid when she arrives–however she looks like a monster on the 3D ultrasounds so it might be a scary pic! :flushed:

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