Hi Everyone,

I was hoping someone could help me on this forum. I know I need to be evaluated by a neurologist, but I was curious if this sounded like MG. I've been tested for pretty much anything I could be tested for that related to my symptoms I think? (except MG) and I have a dr visit in a few weeks for MG. For background I'm 34 years old and have had no pregnancies. I've always been skinny, so none of these are related to being overweight and I sleep very deeply and get 7-9 hrs a night depending on the night. I have a desk job so I'm not expending a ton of energy so I'm not sure why I feel so bad all the time. Also, if I'm going to be out all day on a Saturday for example, like hiking and a picnic or shopping and lunch in town or something, then I feel HORRIBLY fatigued and tired for a few days afterwards (~4-5 days).

I'm curious if these symptoms sound like MG or Chronic Fatigue Syndrome and, if my MG tests are all negative, how would I know if it's still maybe MG even if my tests are negative or something like Chronic Fatigue Syndrome. Thank you in advance for any feedback.

Here are my symptoms:

Eyes ~A few years
Blurry/hard to focus vision, both eyes but especially in left eye and gets worse throughout the day.
Mild ghosting in left eye during day, severe in both eyes at night
Light sensitivity.
Eyes ache sometimes, especially notice when really fatigued (usually at night)Nystagmus (rarely, a few times a year).

Swallowing ~not sure when this started, kinda on and off for a long time
Sometimes choke on liquid, sometimes have a hard time initiating a swallow with liquid almost like I push hard to swallow or else I'll almost choke.
Solids sometimes stick in throat and need to wash down with liquid.

Voice ~not sure when this started, kinda on and off for a long time
Every once in awhile my voice gets really weak and it’s noticeable when I talk, almost like my voicebox muscle is weak, maybe once every two weeks?

Muscles ~1 year
Weak feeling, especially arms, get tired from just typing on the computer or holding mouse.
Neck muscles are super tight and knotted (on the sides of my neck and top of shoulders).

Generalized Fatigue - ~15 years, but got severely worse over the past few years
Feel weak and tired all the time…I’m best in the morning, but get progressively worse during the day and crash by the time I get home from work (rarely have the energy to make dinner, ususally have to prepare food on Sunday to have dinners ready when I get home during the work week) and I take a 2-3 hour nap on Sat and Sunday.

Trouble breathing ~A few months ago
Only one episode-I had severe problems breathing while walking at a slow pace a short distance to my car after work one day.

Diagnoses:
Gastroparesis – diagnosed by a gastric emptying scan in 2006. It was severe, but now it's mild.
Scoliosis – pretty significant S curvature diagnosed as a teen but seems like it got worse over the past few years.
Mono – had mono in 1996, never felt like I recovered and always required significantly more sleep/rest.
Vitamin D deficiency - I have a deficiency, but I take plenty of it every day so I'm not deficient anymore. I still have to take it every day though.


Tests
Cortisol (to rule out Addisons) – normal
THOROUGH Eye exam (to rule out any kinds of eye problems) – normal
MRI (to rule out MS) – normal
Polysomnography (to rule out Narcolepsy) – normal
Thyroid (to rule out thyroid problems) – normal
Glucose (to rule out diabetes) – normal

Other Notes
Eat healthy, very little exercise (a 15 min walk a few times a week), take vitamin D, B, C, and fish supplements, never did drugs. Always have been pretty skinny.

Also, I should note that although these symptoms feel severe to me, I've never been hospitalized for any of this and I continue to work a full-time job although it really wipes me out. I don't know if MG can be so mild, my sister-in-law knows someone with MG and she said I'd know it if I had it because I'd be in the hospital.

Also, I never had eyelid drooping but I do notice the part of my eye right below the eyebrow droops like my forehead is too relaxed? but maybe it's because I'm getting older and skin is just sagging?

Hi, and welcome. I don't know anything about chronic fatigue syndrome, but I'm glad you're getting tested for MG. Those symptoms are certainly consistent with MG.

Your doctor should give you a blood test to look for antibodies that cause MG. If it comes back positive, that's a diagnosis. But many people with MG are "seronegative"--that means their blood tests negative. I've seen numbers as high as 20%. Many of us on this forum are seronegative. Your blood will have to be sent off to a special lab, and results can take a few weeks.

There are two other types of antibodies your blood can be tested for if the main test is negative: LEMS and MuSK. I am sure your doctor will also do general blood tests for muscle enzymes to indicate whether you could have some sort of muscular dystrophy--there are many kinds.

If your blood test is negative, the next step should be a single fiber EMG (SFEMG). This is a test done with thin needles. The doctor will insert them into a muscle and ask you to clench slightly and hold, while the machine picks up the electrical signals. Not all neurologists perform this test--you need a neuro who specializes in neuromuscular diseases. If you get an appointment for a SFEMG, let us know! We'll give you tips. SFEMG's are considered highly accurate, though we also have some people here with an MG diagnosis who had a normal SFEMG.

Some neurologists who suspect a patient has MG will give the patient a trial of a drug called Mestinon (generic name is pyridostigmine) even before the tests come back. If you respond well to Mestinon, that aids in the diagnosis. Mestinon doesn't cure MG, but for some it relieves symptoms.

Meanwhile, please be careful. I don't know if you have MG, but it's certainly a real possibility. MG can be unpredictable, and symptoms can get worse fast. If you have a new symptom, or suddenly get worse, or if you are having trouble breathing or can't swallow--that's a medical emergency. Go to the ER or call an ambulance. Tell them you might have MG. There are effective emergency treatments for MG.

Hope I'm not overwhelming you! This is a great place to ask questions. Let us know how it goes.

Abby

If you do have MG, you should know that rest is your friend. You are sleeping, but during the day, try to get off your feet and rest some.

MG can definitely be as mild as you describe!

Abby

Hi there...these are my own experiences of some differences between the two in case it helps. I had to write fast but hope you figure things out soon

Chronic fatigue was like a bunji jump – once I was down there was no way back up! I could wake at 7 a.m. get up go back to bed at 9.a.m. feeling like the day was over, get up again take another 3 hour nap in the day and then go to bed again at 7 p.m. CF was also accompanied with severe brain fog. I could not start a project or job in the house I was so fatigued. Had the same list of things to do at the end of the year as I had at the beginning. Nothing got done…..Mostly generalized weakness - rest did not help.

Myasthenic weakness on the other hand was more like a roller coaster – up and down up and down- fluctuating weakness both of a diurnal type (Feel great at night and first thing in the morning - but by 4.30 p.m. am not able to lift my arms or hold my body upright at the dinner table) and also fluctuating weakness during a single action where you can not finish the action you started (you start off with normal strength but run out of energy before the action is completed - like not being able to finish brushing the teeth, finish peeling an apple, finish sharpening a pencil, finish your sentence etc) It´s not common to have brain fog with MG. And rest does help ….weakness occurs usually in specific muscle sets and I can pinpoint exactly the sets that are affected with myasthenic weakness whereas previously it was impossible to identify weakness that precisely in chronic fatigue.

That's excellent, Anacrusis! Thank you so much. It's so valuable to hear from someone who has experience of both.

In the morning, I'm able to climb the stairs in my house no problem. In the evening, I do pretty well until I get to the last two, and then I stop and rest. Sometimes in the late evening I have a lot of trouble getting to the top and my husband gets that "I feel a jimmy-rig coming on" look on his face and starts mumbling about pulleys and home-made elevators. (At that point, I try to muster every bit of strength I have before he starts getting out the power tools and making holes in things.)

I just want to add for Azriel: MG is an incredibly variable disease. Different people experience it different ways. The things Anacrusis describes are common, but if your experience differs, don't say, "Well, I guess I don't have MG because I don't experience this, or that." I ruled out MG for a long time before I was diagnosed with it because I wasn't having any trouble with my eyes, and because my first symptom was unusual (weakness in my lower back and sides). That's just an example.

Abby

Anacrusis, thanks for the experiences with CFS and MG, that makes a lot of sense.

Abby, thanks for the info on the testing so that I know what they're doing when I go in, my appt is in 2.5 wks.

Rest definitely helps me, I always feel better in the morning then slowly get worse as the day goes by and then I'm fighting fatigue by the time I drive home. And then it starts all up again the next day, I have no problems getting ready in the morning, going up and down the stairs, fixing my hair and makeup, but then when I come home I just want to collapse. When I drive home, I'm fighting fatigue and for some arm muscles always really kill me trying to hold the steering wheel on the way home. They just want to drop and be limp like a rag doll.

Also, even though I don't have the eyelid drooping, I notice that I'm always squinting on the drive home, because my eyes just want to close and I'm tensing them and squinting to hold them open. I realized just recently that I do that all the time when I get fatigued. Does anyone else ever realize they were doing something like that for a long time, just compensating for something but don't even realize it?

Also, is it possible to have my muscles feel like this just from not exercising? I've had people tell me I just need to build up my endurance and get more exercise, except everytime I exercise I feel worse for days after so I can't really do it every day.

Exercise is actually the WORST thing that a person with MG can do, for exactly the reason that you listed. It can - quite literally - kill you.

If your muscles get tired to the point of exhaustion, there is a very real possibility that the muscles which allow your lungs to expand and contract will just stop working. If that happens, you will have to be mechanically ventilated; if that doesn't happen in time, your body will not be able to get oxygen to your brain, and in the most extreme case, you will die.

The big "myth" about exercise - for everyone, not just MGers - is that a person can somehow "build up endurance". I'm not saying that exercise is bad in general, but the fact of the matter is that a person's muscles are only ever going to work as well as their acetylcholine receptors do.

It may be that by exercising, people induce their body to release (or accept) more ACh, but that chemical is what makes everyone's muscles "work" - if your receptors can't pick it up (which is what happens in people with MG), your muscles simply aren't going to work. All the exercise in the world won't change that basic biochemical fact.

It certainly sounds like MG, so it isn't going to hurt anything to have the testing done.

At the same time, I would urge you to get tested for Celiac Disease - the vitamin deficiency that you mention, along with the fact that you have had Mono and have been "very skinny" most of your life, suggests that you might also have issues with absorption. CD is an auto-immune disease, and if you have one AI disease, you are likely to have others.

The "very healthy" diet that most of us think is healthy is pure poison to someone with CD, as their bodies are trying to actively reject anything made with wheat, barley, or rye. Once they are able to get those ingredients out of their diet, their intestines start to heal, and they start to absorb nutrients again. Many people can go years without realizing they have issues with gluten, and many people who don't test positive for CD are actually gluten-sensitive and also benefit from a GF diet.

If you do decide to get tested for CD as well, just be sure that you don't start a GF diet until after they have drawn blood for the test - otherwise, you might skew the results.