Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone,
For the past year I have been feeling uncomfortable in the tongue region. After about 6 months I saw an ENT who diagnosed me with silent acid reflux. She put me on a bunch of meds all of which did not resolve the problem and in fact it gave me real acid reflux symptoms! I stopped taking those meds.
The last few months I have been getting bouts of severe weakness in my legs that lasts for a few days then comes back after a couple/few weeks. My right leg is now slightly more fatigued than the left although it is slowly getting better. My right leg tires after exercise even after a light workout.
My tongue issue is slowly getting worse because now I feel like I am slurring my words (even though everyone says they don't hear a change). It feels like my tongue gets slightly uncoordinated when I speak. My lower lip also feels kind of weird when I talk, feels uncoordinated/stiff. And now I have soreness below the tongue which I thought was swollen salivary glands but an oral surgeon has seen it and he says it looks fine to him (also had a ct-scan which looked fine to him). Also all the doctors I've seen say the tongue looks normal on examination. I also have a feeling where my throat feels like it's closing up but I don't know if that is a result of the GERD or not (the ENT did say my upper esopahgus was swollen which can give that feeling).
The tongue and lip issues gets SO MUCH worse when it is even slightly cold outside, I can almost not speak any more it feels so stiff.
I saw a neurologist who suspected MG: I had a blood test for anti-ACh receptor antibodies but they were negative, I just had a blood test for anti-Musk antibodies and am waiting for the result. She's giving an EMG next week although I've had one before with another neurologist where he tested my legs and he said it was "normal". She wants to test the tongue itself. I have the feeling everything is going to come back normal... :(
I'm so lost as to what is causing the tongue issue. I've never heard of GERD causing slurring of the speech before... Has anyone else felt the symptoms I've described here before? Is your slurred speech noticeable to others?
For the past year I have been feeling uncomfortable in the tongue region. After about 6 months I saw an ENT who diagnosed me with silent acid reflux. She put me on a bunch of meds all of which did not resolve the problem and in fact it gave me real acid reflux symptoms! I stopped taking those meds.
The last few months I have been getting bouts of severe weakness in my legs that lasts for a few days then comes back after a couple/few weeks. My right leg is now slightly more fatigued than the left although it is slowly getting better. My right leg tires after exercise even after a light workout.
My tongue issue is slowly getting worse because now I feel like I am slurring my words (even though everyone says they don't hear a change). It feels like my tongue gets slightly uncoordinated when I speak. My lower lip also feels kind of weird when I talk, feels uncoordinated/stiff. And now I have soreness below the tongue which I thought was swollen salivary glands but an oral surgeon has seen it and he says it looks fine to him (also had a ct-scan which looked fine to him). Also all the doctors I've seen say the tongue looks normal on examination. I also have a feeling where my throat feels like it's closing up but I don't know if that is a result of the GERD or not (the ENT did say my upper esopahgus was swollen which can give that feeling).
The tongue and lip issues gets SO MUCH worse when it is even slightly cold outside, I can almost not speak any more it feels so stiff.
I saw a neurologist who suspected MG: I had a blood test for anti-ACh receptor antibodies but they were negative, I just had a blood test for anti-Musk antibodies and am waiting for the result. She's giving an EMG next week although I've had one before with another neurologist where he tested my legs and he said it was "normal". She wants to test the tongue itself. I have the feeling everything is going to come back normal... :(
I'm so lost as to what is causing the tongue issue. I've never heard of GERD causing slurring of the speech before... Has anyone else felt the symptoms I've described here before? Is your slurred speech noticeable to others?
Your symptoms sound quite distressing. They don't quite match what most of us have with MG, but we do have a wide range of problems.
Generally we do better with cold weather.
Have you tried one of the symptom checkers online?
mptoms.webmd.com/#introView
Sometimes they are useful to give you possibilities to match your problems.
One of the "tests" that helps find out if you have MG is your response to a medicine called pyridostigmine (brandname Mestinon).
The weakness in the leg that goes away for a few weeks and then comes back for a few days is somewhat different than MG too--we tend to have an occasional good day and mostly weak days when MG is untreated.
It sounds like your doctor is doing the right things to determine if you do have MG. It isn't great to find that out, but at least if you do, it is an explanation for what is wrong. Hopefully you have something less serious!
Good Luck
lorraine
I did get the ptosis first (droopy eyelids) ... And also have other symptoms... Shortness of breath, tripping, leg/arm weakness, double vision, etc...but sometimes only one or two symptoms at a time, other times all of the symptoms at once...
But all the symptoms you mention, I have had... So, no, you are not in the wrong place to ask questions.... You may or may not have MG... But it is a possibility that should be considered... Good luck in getting a conclusive diagnosis and substantial help!
I have found Mestinon very helpful, and my neurologist is excellent. I do have another underlying autoimmune disorder, as do many of us....maybe why the more unusual presentation, lymphadenopathy, pain, etc...my rheumatologist is also very good... Don't forget that autoimmune issues can be associated...although you don't want to go there if you don't need to! :)...that's more for recurrent fevers, weight loss, fatigue, maybe joint swelling...not that your initial symptoms weren't bothersome enough...a throat closing up is quite scary...
One more thing I might check would be allergic with that history, if you haven't already done so...
Best wishes!
Koev, how soon after you take a dose of Mestinon do you get relief from the speech/tongue issues? My neurologist wants to try a trial of Mestinon to see if my symptoms are truly MG and I'm wondering what to expect...
The last week my whole throat region is very sore (underneath the chin down to the Adam's apple), and it comes and goes during the day and is relieved somewhat with ice. Do you get the same?
Also, I have another autoimmune disorder: Hashimoto's Thyroiditis. But my thyroid levels are perfect at this point so I'm not on meds. Also have (undiagnosed) Psoriasis.
I do get a lot of sore throat symptoms and some of my lymph nodes are enlarged...mainly the posterior auricuars though (behind the ears)...others intermittently--definitely salivary and submandibular with tenderness. Haven't tried ice because I'm so cold intolerant. Yes, some days it's bad...guess I haven't paid much attention to that because of the work I do. I'm exposed to sick kids all the time, so I expect to carry infectious disease with me...if you find an interesting answer I'd be really curious to hear...
I have mildly abnormal thyroid studies..taking thyroid seemed to set off my migraines, so I stopped that.
Also mild eczema...
I am very thankful that I have been usually quite functional... Mestinon, and now plaquenil for arthritis... Keeping me moving and usually talking ok:) Just working on minimizing exacerbations which have been creeping up a bit more lately...
Hoping you find comfortable, functional living...:)
We all seem to be seronegative for MG (which doesn't mean we won't be diagnosed with MG) we have all been suspected of suffering MG because clinically our symptoms present as it and we don't seem to fit the typical chronic fatigue or fibromyalgia patient!
I am thankful to have found people these people. It is a comfort to know I'm not alone as well as helpful to follow their progress and experiences Ultimately any progress or breakthroughs amongst one of us could help the rest of us as well!
Most importantly they are a fantastic source of inspiration and support!
Out of curiosity does your tongue problem/throat closing come on stronger with your leg weakness and do you experience general fatigue with it as well?
Welcome to the group btw :)
Craig.
The tongue issue got worse in the last 1 month or so, where I feel like I am slurring the words but no one hears the difference (which is frustrating since I know it doesn't feel right in my mouth). It gets SO much worse in cold weather and my bottom lip does not work as well, to the point where I don't want to to talk anymore. And now in the last week I'm starting to feel the soreness below the tongue which comes and goes. Also feels like my facial muscles are slightly "tighter" but that is not nearly as bad as the tongue and leg issues. The severity of the symptoms fluctuates day to day.
I'm at a loss as to whether the bulbar symptoms is MG or just the GERD. My GERD diagnosis after doing the swallowing test was that my upper esophageal sphincter muscle "spasms"... Does muscle weakness cause spasming?
What are your tongue symptoms (and any other ones)?
I equated the throat symptoms with GERD, but now that you are bringing all this up, it does fit way more with the MG.
You are so right, Craig. A lot of us get WEIRD stuff that does not fit into any textbook description and I feel like the neuro might send me to the psychiatrist for bringing it up...
But so sorry for your symptoms, nyc35. I was having the speech issues today..and thinking of you. Not really pain, just a little discomfort in the submandibular area, and just beneath my jaw...and my eyelids are really heavy. No terrible vision today, though:) Just a little weak. So it's a pretty good day.
Hope you're having a good day.
I have the EMG test on Weds and she is going to test the tongue region. I have a feeling the EMG is not going to show anything special which will just add to the confusion.
I am on NSAIDS all the time...pretty strong ones...Diflunisal 500mg twice a day. I was a little amazed when I went off it a while back how much my throat and lower, posterior tongue hurt. Again, I just assumed it was GERD and/or something I picked up at work. Never thought twice about it until you brought it up here.
Hmmm...
Off to pick up the kids...I'll check in later..