Myasthenia and Lupus?

[Cathyan]

Has anyone on here with double vision gone on to be investigated for, or diagnosed with, myasthenia gravis? I've had a Lupus diagnosis for 20 years with double vision occurring occasionally with the flares, lasting a few weeks. However I've had horizontal and vertical double vision for the last 6 months, and some facial, arm and neck symptoms. Just waiting for a neuro appointment atm having finally got my optometrist and rheumatologist to take the double vision seriously. Would be grateful to hear any stories of lupus warriors who have been checked out for MG. I would really like it to turn out to be all due to the lupus - the swallowing issues of MG and the risks of a myasthenic crisis scare me! If anyone has both could you sign post me to a good website to read it up please? Thank you guys!

[Largather]

Hi, not sure if this will help. Prior to my SLE I had an illness that affected my Thymus gland. When the thymus is activated it causes many problems but also make symptoms like MG. In fact most people with MG have the thymus gland out.Anyway had all the tests for MG but negative. Years later I was diagnosed with ANA negative SLE and now and again i have 'MG' type symptoms but negative tests. Since my Pfizer jab (terrible reactions) I've had MG symptoms so I'm thinking that maybe as the vaccine activates immunity it may activate the thymus to do it.

Either way it's a great possibility that your MG tests will hopefully be neg.

[Cathyan in reply to Largather]

Largather that’s really helpful to hear your story. I’m ANA negative and I had the Pfizer jab 4 weeks ago, since when the symptoms have worsened. However also had a stressful family event. Keeping my fingers crossed for negative tests for MG.

[Cathyan in reply to Largather]

Largather just a quick question please if you have a moment - do you get swallowing issues as part of your MG type symptoms? What other symptoms trouble you as part of the MG type flare ups? Thanks. Hope you feel better soon.

[Largather in reply to Cathyan]

Hi Cathyan,Yes I get swallowing symptoms when I'm eating sometimes. Cough during eating and food gets stuck (always have water there)

Best way to describe these MG type issues... everything is tired and slow and hard work! Muscles are just exhausted! Too tired to chew , jaw too tired, throat too tired, tongue too tired ect ect ect. Eyelid tired, face, neck, arm back, legs. Also, get painful muscle spasms alover. That happens if I dont listen to my body and rest. If you over push your weak muscles they will feel like rock. My main weakness is almost like a circle, from right rib up chest ,neck, face over head down back /spine back to my ribs. Can feel like my spine is sore and being pulled. Also I get at the same time stomach problems, same type muscle rigidity, like a tight band around me. Sorry to be so graphic but that's it.

I havnt had an attack of the MG type symptoms for about 4 years, this came on 4 /5 days after my Pfizer jab alone with my lupus flare. Which sends me back to the idea that it activated the T cells which involve the Thymus which create these symptoms. Hope this answers your question. Cathyan, I've been tested 4 times for MG and never been positive. Take care xx

[Cathyan in reply to Largather]

Thanks Largather. This sounds completely like me. So helpful to hear your account. Neurology appointment Friday so I guess the investigations start then.

[Largather in reply to Cathyan]

Good luck Cathyan!!

[Freckle1000]

Hi Cathyan,

I've had lupus for a long while myself - and have developed a bit of a bok eye and mild left sided weakness and lack of sensation and mild fuzzy and double vision.

I've read other posts here about MG. and wondered about it myself.

I think with us - although these things should be considered - it's important to direct you're neurologist toward good old fashioned Lupus perhaps messing with you're nervous system - either via auto - antibodies or sticky blood.

From my own bitter experience - an MRI may not show microscopic damage until it's too late - so insist on a lumber puncture - ( and MRI ) to look for lupus cells and those obliclonal bands thingis - that will diferenciate lupus from other issues.

I've had Professors come at me with horrific alternative neuro diagnosis' that have always ended up being treatable lupus in the end.

There's just not enough education and deep knowlege out there amongst Doctors and neurological lupus. So always start with this.

Having said all this - I hope it's not neurological 🙃x

[Cathyan in reply to Freckle1000]

Thanks Freckle you’ve been very helpful. I’m sorry you’ve had such difficult experiences. I’m wiped out right now so can’t write more for the moment.

[Cathyan in reply to Freckle1000]

Freckle just coming back to this now I have some energy. Your neurological involvement sounds to have been frightening.

I don't think I've ever had the full blown acute neurological lupus/brain/spine flares - inflammatory markers haven't gone high enough. I get renal involvement. It's not like a fever related flare-up this time. More like a fatigue bringing on the symptoms. Also, surprisingly, I haven't had brain fog the last few weeks. I fully expect some more characteristic (for me) lupus like symptoms to start shortly though, just because such a level of exhaustion usually triggers them. I have wondered whether microvascular things are causing the neuro symptoms though. I've always been negative for the sticky blood.

Thanks again. I will definitely push for all the investigations - I would like answers!

[Freckle1000 in reply to Cathyan]

Apologies - It's not as bad as it sounds - I'm just a little shocked by it all - as it's all new. My first smudge of white matter damage in the brain - it just effects my concentration a little . My optic nerves looked a bit unusual at first- but they seem to have dismissed this as a problem for now. I don't have spinal problems and havent had a blood clot.

The lumber puncture was the best way to diagnose for sure what had happened because my bloods- anti - dsDNA etc. were negative and I was thought to be in remmision. They found the grand total of 6 Lupus cells in the lumber puncture so its not disastrous. I'm just a bit of a silent lupus simmerer.

Hoping all go's well with the neurologist.

X

[Cathyan in reply to Freckle1000]

Thanks Freckle. I’ve got an appointment Friday. All the best to you. I have cognitive impairment also.

[Freckle1000 in reply to Cathyan]

xox

[GeorgiaAny]

Hi Cathyan,

In my case things happened the opposite. I had MG for about 8 years and after I developed Lupus. They are so so similar but I can assure you MG is absolutely piece of cake compared to Lupus. It was in my case... Apart from little weakness in my legs, arms and neck and double vision from once in a while it was going quite well. Facial weakness as well, I couldn't smile anymore.

But Unfortunately since Lupus started I'm all a mess, absolutely exhausted and could sleep all day and night, plus many others horrible simptoms . You were concerned about swallowing (maybe chewing as well?), unfortunately it happens with people having MG. I never had that, I was lucky.

I hope you will be fine and the test for MG antibodies comes out negative.

If you need more info I'll be here or you could write me on [e-mail].

All the best and stay safe!

[Cathyan in reply to GeorgiaAny]

GeorgiaAny thank you so much for replying. That's really helpful. I'm so sorry to hear the lupus has been bad. How long have you had it? Were you on immunosuppressants +/- steroids for the MG already when you developed the lupus?

I hope your consultant rheum can get things stabilised for you soon. My lupus fatigue didn't settle until I'd been on methotrexate injections for 2 years (and took early retirement). It's really worth pushing to get the right treatment for yourself. I was on azathioprine hydroxychloroquine and prednisolone for years and it wasn't doing much for me - I should have been brave and asked to try something instead of the azathioprine much sooner; I could have saved years of unnecessarily high steroids.

[GeorgiaAny in reply to Cathyan]

Thx for your advice, my doctor is actually looking to give me either azathioprine or methotrexate. Feels like I've been sleeping for the past 2 years with Hydroxychloroquine as its not doing much for my Lupus condition . As for MG I was on Prednisolone (max 15mg, mostly 5 mg) for 8 years after that I developed Lupus( and it's been 2 unbearable years now).Hope for the best and take care!

[Cathyan in reply to GeorgiaAny]

Thanks GeorgiaAny. I hope you get onto a treatment that works for you soon.

[crashdoll]

Hi Cathyan 🙂 I don’t have lupus but I have rheumatoid arthritis with a connective tissue disease overlap. I have MG too, diagnosed following a severe crisis and subsequently had another (less severe) crisis but - touch wood - things have been less scary. I have symptoms mainly affecting my eyes, vision, swallowing, voice and neck. My limbs are affected but not as badly.

The medications they use are fairly similar to other autoimmune disease. Most people are on azathioprine, mycophenalate or methotrexate. I’ve noticed steroids are used more frequently in MG than rheumatology. The drug almost everyone takes is mestinon (pyridostigmine) which is a short acting drug so needs regular dosing. I find it keeps me somewhat stable.

They are using rituximab more and more since it was approved for MG.

A hallmark of MG is fatiguing weakness - the more you do the same repetitive movement, objectively, the weaker the muscle gets. Another hallmark is that you improve after rest. There are lots of basic neurological tests they do which strongly suggest MG. The gold standard is antibody tests and a nerve study.

I have rambled a lot but let me know if you have any other questions.

[Cathyan in reply to crashdoll]

Thanks crashdoll that’s very helpful to hear your story of MG and RA. Very tired right now but I have a neurology appointment Friday so hopefully will have a better idea soon. My rheumatologist has promised me rituximab to treat this if it’s due to lupus. Already on prednisone and methotrexate.

[Fennella02]

This sounds very similar to me. Diagnosed with lupus 2001. Symptoms always changing. Then my left eye started to droop, respiratory fatigable weakness, legs giving way, choking, apnea etc etc. Everything pointed to possible MG but my rheumy remained unconvinced. Long story short - antibodies and SFEMG were normal and all has been attributed to my lupus flares. Good luck to you x

[Cathyan in reply to Fennella02]

Thanks for letting me know about your symptoms Fennella. I’m very grateful. I’m freaking out as never had these so bad. So how do you manage them? Do you get steroid doses upped? What about in the immediate short term and you’re having difficulty eating or breathing?

[Fennella02 in reply to Cathyan]

First thing I would say is - stressing about things will make it much worse. I totally ‘worried’ myself sicker. My rheumatologist seemed unperturbed and I dreaded a ‘crisis’. I was totally, 100% convinced that I had MG - the ophthalmologist, neurologist, respiratory consultant and even a lupus professor had a strong index of suspicion. Over the years, the eye weakness has lessened and I now recognise it as part of a lupus flare as I do with the other signs of weakness - there have been times when I don’t have the strength to even type a text on my phone or cut bread!

A great source of wisdom, information and support has been the American forum, Neurotalk. Unfortunately, the American, private, medical system works very differently to the NHS here in the UK so their advice isn’t always practicable but I found it comforting nevertheless. I now accept that I don’t have MG but I do have some overlap symptoms. The immune system is so enormous, it’s not surprising that things can’t be pigeonholed. Hope this helps, try not to worry xx

[Cathyan in reply to Fennella02]

It does help - thank you Fennella🙏 From yours and everyone else’s responses it’s looking fairly likely this will turn out to be the lupus. I shall try not to stress so much about it. I am an overthinker 🙄 Thanks again Fennella and everyone xx

[Cathyan]

Reporting back to say the neurologist examined muscle fatiguability of various bits of me timed for 1 minute then pronounced it to be due to lupus fatigue and latent squint. Absolutely not convinced by latent squint but happy to be told it's not MG so I shall be pursuing my Rheum to add the promised rituximab for the lupus.