Hello! I am new to this site and to myasthenia gravis in general.
While I don't have 100% diagnosis yet, my neurologist seems to think I have it.
I knew I had Sjogren's and CFS, but I have left eye droop & weakness as well as extreme muscle weakness. If I'm sitting..resting, I'm pretty much okay. Any exertion though, forget it.
One of my questions is this, before I got the diagnosis of Sjogrens and was put on Plaquenil, one of the most awful sensations I battled was my throat. I couldn't describe it...like there was something in my throat or like one 'wall' was dropping inside, and sometimes just felt like someone was holding a stick up against my throat and pressing hard. I still have hints of it and I HATE it.
Is that something any of you have experienced? I'd tell Sjogrens folks about it and my rheumy and never really got any feedback. Is that because it's more typical of MG?
I'd truly appreciate any input you have for me.
Happy to be here!

Hi, crmak. Welcome.

Plaquenil can actually make MG worse in some patients. That "might" be what happened with you. Not all doctors know all of the drugs that could be (relatively) contraindicated in MG. The drug doesn't necessarily help with all Sjogren's' patients. Has your rheumy discussed any other drugs for it?

Are you being looked at for lupus? I hope not! It's not a great disease to have.

What are your symptoms of MG? Is it just exertion that brings it on or do you have it while doing nothing? Do you have ptosis (eyelid drooping)?

You know what's kind of funny, is if you have MG, taking Mestinon might help with your Sjogren's. It increases eye secretions! Have you ever seen the eye mask at eye doctors specifically for people with Sjogren's? I've heard they do help if you wear it while sleeping.

If you do have MG, be cautious of overdoing things. Do you have breathing problems? An emergency in MG, whether you're diagnosed or not, is feeling generally very weak, not being able to swallow or not being able to breathe in and/or out well. If you get that bad, you should really get to the hospital pronto or dial 911, while someone is calling your neuro for you. I don't want to scare you, only let you know what to do if you get worse. Some patients who have MG and aren't diagnosed or treated yet can have an "MG crisis" and need help right away.

Please ask as many questions as you need to! There are a lot of MGer's here who are great at helping and giving you the support you need right now. It's very hard to not know what is causing you to feel so sick. I hope you'll get that diagnosis soon.

Annie

Hi Crmak, welcome to the site!

My diagnostic limbo is the same. Originally, a neurologist said I have MG, and I respond to Mestinon and the Tensilon test which reinforced that thought, but I've tested negative on all the receptor antibody tests and SFEMG, so the diagnosis is still pending. Regardless, I'll still address your question.

Yes, I also have throat issues as you describe. When it started in November, I described it as the wall of my throat collapsing in on itself. It was most notable when sleeping on my back but gradually became noticeable when sleeping on my side and now occurs sitting up. It's continued non-stop since November and varies in intensity. Usually I describe it as a 'throat-closing' sensation. At its worst, I felt as if I were actively being strangled with a tight sensation all around my throat accompanied by my blood pressure and heart rate being driven up. The strangulation sensation was worse when lying down. My throat will also pop when I swallow. I can hear the pop and it can be felt by holding a hand to the front of my throat. There's a lot of mucus that collects at the back of my throat, and grains of food will sometimes get stuck there. Round the clock, my throat is tight and occasionally feels achy. I've also had a hoarse voice and other voice changes such as having a high voice like Minnie Mouse (not so common but I have spoken with one other person who has a soprano voice from myasthenic syndrome).

I've spoken with others, there appear to be many people who have a similar throat-closing sensation from MG. I'll be curious to see their responses.

Again, welcome to the board. There are some really amazing people here who you'll come to appreciate.

Thank you all so much! Well, here are some of my symptoms:
I have left eye ptosis..pretty pronounced. If I put ice on it, it perks up nicely, only to soon enough droop again. Seems to be getting worse.
My lips are NOT the lips I recognize anymore! I don't understand...is that part of MG, too? They are...how do I explain?...the upper lip that used to be a classic arched lip is suddenly thin, and I suddenly have these grooves going downward at each corner of my mouth.

My neurologist seems to think I have MG, even though she doesn't have the results of my tests yet (my MRIs of brain and spine are scheduled), and says that even if I'm negative on everything, she's starting me on MG meds.

I sometimes have depth perception issues...I talked to my husband today for about 5-10 minutes, and my throat is STILL fatigued & sore, and that was over an hour ago.
I haven't walked normally up the stairs for about 2 years. I have to take them one at a time, not able to trust my leg muscles to hold me up..my right leg in particular.

I usually have to put a bean bag type little pillow under my elbows to be able to type on my laptop 'cause I can't hold up my arms in place that long.

If I take a hot bath..well actually, I can't do that anymore. But if I do, my legs are instant lead. I can NOT move them to get out of the tub.

I won't go on..I feel awkward having mentioned that many as is! I don't mean to complain, but honestly, are these signs of MG?

I truly appreciate your help. Thank you!!
Shelly

Every one of those sounds like MG, except maybe the throat soreness. However, everyone's interpretation of pain is different. One person's pain may be another person's "irritation."

I'm glad your doctor will do meds for MG, despite the test results. Sounds like you have a good doctor.

Good luck!

Hi Cmak, and welcome!

I am also not a confirmed diagnoses, but get IVIG for my mystery illness after I crashed and landed in the hospital.. (18 months or so ago now)

I have that throat closing sensation sometimes- as if the back of it has collapsed on the front of it... one night it got so bad after a busy day at work, that when I went to talk m y voice coudln't seem to make it out as it was obstructed by this collapse!!! It was terrifying!!! I had all over weakness and droopy face badly at that time.. I couldn't eat or drink without choking (so stupidly I didn't eat or drink much for a day or two until I got my IVIG).. and then I was normal again (well new normal)... It comes and goes.. but it is very anxiety provoking for sure!

As far as the depth perception stuff, my vision is double and just weird.. ghosting at times, and other times if I focus on something up close for a while it takes a while for me to get my eyes back when I look away and at something else

As far as the hot baths go - I will never forget before I completely crashed (or maybe while i was crashing) I took a shower and got out and coudln't do a thing.. I laid there like a lump of jello.. couldn't breathe, swallow, move or anything.. can't say I've taken a lot of hot showers since! Summers are fun!

I take plaquenil - they thought maybe sjogrens as well, as my markers were elevated, i have dry eyes and mouth.. I had horrid joint aches.. and it helped so much with energy and the aches.. until they backed me down to the maintence dose.. It's not as useful it seems then.. Benadryl makes me worse for sure though - all of my symptoms, and I look into a mirrior and it looks like my face has melted off (but again I have no concrete diagnosis)

What tests have they done, or are they scheduling you for? any other treatments? Do they think a myopathy or myositis is a possibility - since you have sjogrens? did they do a ck on you?

Interesting! I am so excited that I can come here and get such great input! Thanks!
As for tests, I had a 'Myasthenia Gravis Panel' blood test done and was told it was negative..I am going to ask my rheumy for the details so I really know what was done.
Next week I have an MRI of my brain, and another of my spine. I'm anxious to see what they show, if anything. I've had an echocardio thing done on my heart and it looked great. Had that done because of a weird episode I had where my usual muscle spasms seized up hard around my ribs but led to me having chest pains and difficulty breathing. Flexeril didn't help at all.

And then on April 4th, I've got an EMG muscle test scheduled.
I've had a history of odd breathing problems that crop up every so often, even leading to pulmonary tests & xrays which frustratingly never show anything. My 'bubble wrap sticking' sensation that I have in the bottom of my lungs sometimes drives me nuts! I hate it, yet nobody can ever see it on an X-ray.

I have definitely been diagnosed with Sjogrens and CFS, and bny806, Plaquenil helped my weakness and joints at first too. But nothing has really made a huge enough difference to where I can do any housework or walk up stairs well.
And my muscle spasms have gotten worse..except very recently while on Prednisone.

Benedryl makes me feel so gross, too! My legs and back get the creepy crawlies bad..like restless leg throughout my body. Weird!

bny806, you asked if they did a ck on me. Do you mean a check for Sjogren's, or something else?

And AnnieB3, at first they thought I had Lupus, but ruled it out with tests. They looked at Fibromyalgia, but I don't have pain as much as extreme weakness. I'm pretty okay if I'm still, but any exertion is awful.

Thanks again to you all. Sjogrens only explained things to a certain point. What I'm learning here from you all makes me think my Neurologist is on to something because MG seems to answer a lot of questions.
Thanks again!

crmak- interesting!!! I get the creepy crawlies too!! I have documented non length depended small fiber neuropathy (epidermal nerve biopsy was "significantly" abnormal").. sometimees I cant tell if its my muscles vibrating or my skin crawling - can't tell the difference!! I have heard people on here with MG talk about that sensation when they get overly weak and tired.. It worsens the more I use an extremity usually

My neuro did a test that wasnt' initially on the panel that came back a 20 (and normal is 0-20) which made them curious.. it was the acetocholine modulating antibody I believe... ..

ck, as in cpk.. which is a measure of muscle breakdown- MOST of the time people with myositis, some myopathies etc will have elevated results.. MG won't (not that I'm aware of anyhow).. if it comes back elevated then they do a muscle biopsy many times.. people with LUPUS can have polymositis, and i'm sure sjogrens also increases the risk as well..

Keep us posted on everything! Hope you get some answers.. and good answers!

Shelly (thanks for that), Do you ever get rashes, like to the sun? If so, have they been biopsied? Sometimes SCLE can present with only a rash and possibly Anti-Ro AB's. Which lupus tests did they do?

When I'm in between doses of Mestinon, my throat can get dry and it can feel sore on occasion. Without enough acetylcholine, your mucus membranes can become drier.

Yes, those sound like MG symptoms. I echo what bny said about the CPK and polymyositis. Did your doctor do that test?

It's possible that they didn't do the MuSK antibody test. You should get your records to see if they did.

I hope you get answers soon.

Annie

Hi, the tight squeezing chest symptoms sound like the "MS hug.". Is the brain MRI to rule out MS, as that isn't a typical MG symptom? Also, the severe restless legs and crawling sensations are very common with MS. You might want to run your symptoms by the folks on the MS list. They are very helpful and caring.

Good luck.