I’m hoping some of you might be willing to read my story and respond with your thoughts.

A few weeks ago, my muscles began fatiguing very easily. I’m fit and active, but suddenly running up one flight of stairs would make my thigh muscles burn and leave me breathless. Things that didn’t tire me out before (taking a walk, going for a hike) now fatigue my muscles and leave me stiff and sore for days afterward. Using my hands for just about anything (drinking from a heavy water bottle, drying my hair, typing, holding my Kindle for any length of time, etc.) fatigues my forearm muscles to the point that they shake, and sometimes even my biceps and shoulders. My right arm is worse, but that may be because I’m right-handed and use it more. Sitting a certain way might fatigue the muscles in my back. While I’m not having any issues with choking or difficulty swallowing food, sometimes the muscles in the front of my neck and throat feel tired and very “thick,” for lack of a better description. Sometimes the muscles in the back of my neck feel fatigued simply from holding my head up. After I fatigue a muscle or group of muscles, they will be stiff and sore for a few days, like I went to the gym and overdid it. I am still able to do my normal activities, they just fatigue me. In addition to the muscle fatigue, I feel generally exhausted every day.

With the exception of the hands/forearms, which pretty much always feel fatigued, the symptoms in my other muscles vary from day to day. Some days I feel fine, other days every muscle feels easily fatigued. Most days I have residual stiffness from muscles I’ve fatigued in the previous days.

I don’t have any facial or ocular symptoms, at least as far as I can tell. I’m not having any noticeable respiratory issues, either.

As a side note, I have recently been diagnosed with an undifferentiated connective tissue disease similar to lupus. My ANA ratio is 1:1280, my WBC is low, I have a history of DVT (blood clot in the leg), and I have Raynaud’s. These all point to lupus but you need to meet four criteria for a diagnosis and I only meet three. All other bloodwork was normal except my Vitamin D level was borderline low. I bring this up because I know it is not uncommon for people to have MG and another autoimmune condition like lupus or RA.

I saw a neurologist last Friday. He ordered an MG panel (I don’t know exactly which tests, although one included “potassium channel” in the name). He said the samples are sent to the Mayo Clinic, so it takes a couple of weeks to get results. He also order an EMG, which is scheduled for three weeks from tomorrow. He did not order a single-fiber EMG. After doing a bit of research and learning that the SFEMG is the mother of all tests for MG, I asked him to explain why he ordered a regular EMG. He said the regular EMG rules out a lot of other things (e.g. ALS) and if the MG blood work is positive and other things have been ruled out, there won’t be any need to do the SFEMG.

Based on the above information, I wanted to get some thoughts on a few things:

1. Do my symptoms sound like MG?
2. Is it typical for them to vary in intensity from day to day?
3. Did any of you start out with widespread muscle fatigue but without facial, ocular, or respiratory symptoms? That seems like an unusual presentation.
4. Does my neurologist’s approach seem reasonable?
5. Any other thoughts?

Thanks!
LLSR

Hi, LLSR. Welcome to the forum!

1. Yes, your symptoms sound like MG, in that it sounds as though you have fatigable muscle weakness (the hallmark of MG).

2. Yes, it's very typical of MG to vary that way! It's a highly unpredictable disease, but most people start to notice what their particular pattern is. MG can still surprise even those that have had it for years.

3. Are you sure you don't have ocular weakness/ptosis (toe-sis)? Have you taken photos of your eyelids when you're doing better and then when you're worse? MGers present in all types of ways, but the classic one is for it to progress from the head muscles and then downward. A neuro-ophthalmologist can tell you for sure if your eyelid muscles are fatiguing.

4. Yes, the approach is reasonable. Why? Because if they can rule in or out other diseases, and your AChR test or others are positive, then you don't necessarily have to put yourself through yet another test when the clinical suspicion for MG is high.

5. Yup.

Have you had the blood clotting tests done, such as lupus anticoagulant, antiphospholipid antibody, etc.?

Have you ever had your vitamin B12 tested? It's as common as a D deficiency. I hope you are supplementing with D and will continue to do so. If you have lupus, you should know that recent studies have shown not only a direct correlation between a D deficiency and lupus, but they are now finding that having a deficiency might contribute to getting lupus and other AIs!

It actually sounds as though your chest wall muscles ARE affected. If an activity leaves you breathless, then that probably indicates a fatigable weakness of those muscles.

Lupus is hard enough to live with! I hope you have a regular rheumatologist who will periodically check things such as your kidney function. You need to be very aware of that, because some drugs you might be offered (for lupus or MG) could adversely affect the kidneys.

MG has a high learning curve. If you end up with that diagnosis, make sure you come back and read as much as you can or ask lots of questions! The other disease that your doctor tested for is LEMS (Lambert-Eaton Myasthenic Syndrome). That "cousin" of MG can come with a risk for small cell lung cancer, so it's good to know which one you have!

Many things can make MG worse, such as lack of sleep, stress, infection, and even drugs such as Plaquenil (some people are fine with it). Extremes of heat and cold can make MG much worse, so be careful out there! If you do get overheated, make sure you cool down right away. Sit in front of a fan or a freezer! Run your wrists under cold water. Anything to cool down, especially the core muscles.

Start keeping a diary of your symptoms. Write down how you're doing before AND after an activity. It will really help. And the more a person does with MG, the worse they can get. Running errands for one hour might be ok, but doing it for three might make your body force you into a nap. Naps are very beneficial for MG and needing one is often the first sign of the disease!

Anything else we can help with? Just take it easy until you get a diagnosis. And if you get worse, such as not being able to swallow, move, or breathe well, then dial 911. We can get a "MG crisis," where muscles can stop working. Don't be scared about that, just be aware and prepared!

Annie

Hi Annie,

I can’t thank you enough for taking the time to respond!

Over the last 6 months, my rheumatologist tested lupus anticoagulant, antiphospholipid antibody, creatine phosphokinase, IgG, IgM, TSH, sed rate, SSA, SSB, SCL70, C3, C4, C-reactive protein, rheumatoid factor, uric acid, and ferritin, and did a CBC and metabolic panel (twice). I don't even know what all of those are, but all were normal with the exception of high ANA, low WBC count, low neutrophil count, and slightly low vitamin D levels. I have just started supplementing vitamin D. I don’t know whether my B12 levels were checked, but I already supplement with methylated B12 since I have the MTHFR mutation.

You mentioned that Plaquenil can make MG worse. I started taking a very low dose (100 mg/day) about six weeks ago as instructed by my rheumatologist, with the intent of working up to 400 mg/day. However, within a couple of days I noticed my muscles fatiguing very easily and realized that going up the stairs was leaving me breathless. That’s when my symptoms began, or at least became noticeable to me. I called my rheumatologist and his nurse instructed me to stop taking the Plaquenil and schedule a follow-up appointment. My rheumatologist was confident that the Plaquenil could not have caused my symptoms, especially since I only took 100 mg and for less than a week. He ordered labs to re-check a few things (metabolic panel, CBC, creatine phosphokinase, ANA, and c-reactive protein). Again, everything was normal except ANA, WBC, neutrophils, and vitamin D. He said it would be wise to follow up with my neurologist regarding the muscle fatigue, and advised me to restart the Plaquenil. However, I decided not to restart it until I’d seen the neurologist, and now that he’s ordered additional tests, I’ve decided to wait until those are completed. I would prefer to deal with one thing at a time and don’t want to be taking a new medication while my neurologist is trying to figure out what’s going on. Could the Plaquenil have “triggered” MG, or exacerbated it to the point where it became obvious? Another thing that coincided with my symptoms starting was the summer heat. I live in Colorado and we had a very cool May and June, so our summer didn’t really start until July, which is right when I began noticing the muscle fatigue.

Anyway, thank you again for responding, and I welcome any additional thoughts.

One more question:

Is muscle twitching common with MG? I seem to be having them all over, but especially in my right arm, which is where I have the most fatigue/weakness. I haven't seen twitching listed as a symptom, but it would make sense for fatigued muscles to twitch, right?

Honestly, this is the symptom that has me most worried, since it is commonly seen in ALS.

Plaquenil hasn't been known to cause MG, only exacerbate it in some MGers.

http://www.ncbi.nlm.nih.gov/pubmed/22160434

http://www.ncbi.nlm.nih.gov/pubmed/23588942

http://www.ncbi.nlm.nih.gov/pubmed/24254965

Neurontin, however, has been shown to have a correlation between not only exacerbation, but initiation of MG.

Since you have had a clot, I don't think starting/stopping Plaquenil is a good idea. Trust your rheumatologist. A MG diagnosis can still be made while on that drug! But also trust your instincts and keep your doctors informed of any changes!

It could just be a coincidence between Plaquenil and the hotter weather! Heat makes MG so much worse. There's a reason for that. Heat increases the enzyme called Acetylcholinesterase (AChE). When Acetylcholine (ACh), which is a neurotransmitter, is done with its job of making your muscles strong, AChE comes in and cleans up any excess ACh. It's the body's version of a checks and balance system.

So, when the body gets hotter, no matter if the cause is infection, exercise, weather, or whatever else, the enzyme increases and the body has less acetylcholine for the muscles to use! MGers already start out with less of the "muscle gas" getting to the muscles, so it makes us so much weaker.

Before I was diagnosed with MG, I had all sorts of twitching and cramping of muscles. When I have had exacerbations or a crisis, my muscles can cramp up or go into spasm. During my crisis, my left hand actually contorted up a bit after holding something for a minute!

Our muscles can get weak on a spectrum from mild to severe. When they can't hold a contraction well, whether that's from continuous use or overuse, that's when they "act up" and twitch, cramp, or spasm.

I know that people tend to think ALS, but ALS is not fatigable. It's a progressive weakness (unfortunately).

Has anyone checked your electrolytes? A fluctuation in them can cause muscle twitching as well.

The MTHFR mutation seems to be more common in those with AIs. APS is more common, too. I'm glad you're taking methylcobalamin! I hope you do it a couple of times per day. The body needs a continuous source of it. Insurance should really pay for that!

Do you get a rash while in the sun?

I know more than most about lupus, because I volunteered to the local foundation for 10 years (design, writing). It can come on slowly, as I'm sure you already know. It sounds as if you have a good rheumy and that's half the battle with lupus. Stupid little disease!

Did she do a urinalysis to check for protein, too?

I hope you get some answers soon. Stay the heck out of the heat!

Annie

Thank you again for taking the time to reply so thoughtfully and thoroughly to my post. You've definitely put my mind at ease about the twitches. Though I'm not thrilled by the possibility of an MG diagnosis, it's a lot less scary than an ALS diagnosis!

I do not get a rash in the sun. I really don't have any of the classic symptoms of lupus. I only ended up at the rheumatologist's office because I saw a neurologist for worsening migraines and he checked my ANA as part of his workup. When he saw that it was high, he referred me to a rheumy.

I did have a urinalysis done about six months ago as part of the rheumatologist's workup. At that time, everything was normal, no signs of protein.

I will give some serious thought to restarting the Plaquenil, as my rheumatologist does feel quite strongly that I should be on it.

Thanks again!