Hi, and welcome. I'm so glad you're seeing a neuro who is testing you for MG. Please know that negative bloodwork doesn't rule out MG. Many of us here have never tested positive for antibodies. Also, if you test negative for the AChR antibodies (the most common), they should test you for LEMS and MuSK. Even if you test negative for all three, you might still have MG. There are other antibodies that cause it, and some people test negative at first and positive later.

Has anyone suggested POTS (Postural Orthostatic Tachycardia Syndrome) to you? I learned about that here, because some of the symptoms mimic MG. It would be worth googling. It causes a lot of the symptoms you mention.

I find it very hard to stand in line, too, and I think you're right: it's because it puts continual strain on the same muscles. I have a rollator (rolling walker with a seat) that I bring to department stores or anywhere that I'll have to stand on line. That way I can sit.

It's typical of MG to get worse when you have an infection. My guess is that an infection kicks your immune system into high gear, and then it produces more of the antibodies that are attacking the neuromuscular junctions, but I'm not sure if that's the real reason.

Many of us here have thyroid problems. Did you take PTU or methimazole (thyroid suppressants) before your thyroidectomy? There's a study that suggests that these drugs can cause MG. I think that's how I got it. If you're interested, I'll try to find the link.

Since your thyroid gland has been removed, I'm sure you're taking synthroid or some thyroid hormone replacement. Do you have your numbers checked regularly to make sure you're not taking too much?

Please feel free to ask questions here.

Abby

Thanks Abby, for answering my inquiry. Yes, I remember seeing Musk on the bloodwork order, but not sure about LEMs. I will check out the POTS info. Thank you for that suggestion. There are many times when I am standing in line that if it weren't for the embarassment and attention, I would prefer to lay down.
No, I did not take any thyroid suppressants before my thyroidectomy. I did take synthroid before to try to halt the growth of the nodules. I continued on the synthroid for over a year and fell into even further state of hypothyroidism. Felt like the walking dead. I finally was able to convince my family doctor to let me try Armour thyroid, which is made from ground pig thyroid glands and within two days I was a new person. However, I have been back and forth from hypo to hyper over the past couple of years due to not being able to keep a steady dose in me.
I have my levels checked more often than the doctors feel I should, but I can tell when my dose is not working properly.
I could have sworn I was hyperthyroid when all these palpitations began, but the levels came back normal, so they continue to bother me.
The cardiologist I saw last hooked me up to an event monitor and diagnosed me with paroxsysmal supraventricular tachycardia. He wants to refer me to an electro cardiologist to see about getting an ablation to stop the irregular beat, but I would like to stay on track with trying to get this weakness issue diagnosed completely before going down that path.

Hi Everyone, Newbeeie


First diagnosised May 2011 with Mg. My experience is the DV. I been wearing prizsm glasses along with takening steriods (30mg) and mestion time span(180mg). Dec.2011 the DV went away and I started decreasing the steriods down to 05mg continuing the timespan. Just recently after having stressful week ( May 2012) my Dv has come back. I have a doctors visit at the end of this month, but meanwhile i going to increase my steriods back to 30mg and get plenty of rest and try not to stress at all.

Hello Everybody….

I´m writing my story. It´s a long one, but it´s my only one ………

Before 2006, that person biking 50 km without needing to train, playing volleyball on a team, river rafting the rapids was me!! I was a great gymnast as a kid and could walk on my hands across the entire playground all in one stretch!!

I´m not really sure when it started, could have been pregnancy 2006 or a little later in 2008 when I detected the start of a very neatly fluctuating and progressive 4 year curve of fatigable muscle weakness.

By the time it had reached its peak in 2011, myasthenic weakness appeared to have two overlapping layers:
1) One that seemed to have a life of its own (general limb weakness)
2) Another that I could actually control (bulbar weakness)

The general limb weakness got WAY out of control in the end, starting in the deltoids and spreading progressively but slowly to the arms, hands, neck, trunk, thighs. And over a 4 year period I would notice a new action that I had difficulty performing with a certain set of muscles with each new flare up. 9 different antibiotics in 2009 did not help matters much. By April 2011 muscles would fatigue within 3 seconds of a repetitive activity.

I remember……….

• Almost beginning to drown when the muscles used for swimming just ´gave up´ on me.
• Feeling myasthenic weakness just waving goodbye, unable to finish a round of applause, problems writing and not being able to strum a guitar to the end of a short children´s song. A small rest of a few seconds would help. Opening jars and packets of chips was becoming virtually impossible.
• Having to lay on the floor many times to rejuvenate trunk muscles to be able to stand or just sit up again. By 4.30 p.m. enjoying my meal as if it was my last one because at any minute the chewing would go into slow motion mode, my hands would get weak cutting the food and I would start falling into my dinner plate by the end of the meal!! One afternoon weak trunk muscles made me sit down in the middle of the street!
• By April 2011 it was almost impossible to hold a telephone to my ear for more than 30 seconds, tie a shoelace, squeeze toothpaste, turn the pages of a newspaper, turn a key in a lock.
• I would put my makeup on in the mornings with my elbows pressed into my stomach and brush my hair the same way!
• The heart was pumping furiously and my face was sweating and hand shaking whilst simply passing the salt across the table.
• I noticed some very interesting changes in metabolism during what I call ……´my daily climbs up Mount Everest´….
• Eventually I lost the anacrusis in all movement (that little upbeat before initiating a muscle action)…You don´t know what it is until you´ve lost it.

One year of milder bulbar weakness came in January 2011 and was alleviated 2 weeks after the withdrawal of long term sedative use in January 2012.

I remember ………

• Reading a bedtime story to my child and finding out by accident that changing to another language I could actually articulate more easily and hold off my evening bouts of dysarthia by a few very valuable extra minutes………
• Having a single grain of rice stuck in the esophagus for 20 minutes. I figured that in the end it would either come up/go down or at some point disintegrate…..
• Choking on small amounts of liquids …even the spray from peeling an orange or the vapor in the shower sometimes started a choking reflex. Juice from food would gush down prematurely and a lazy and unpredictable epiglottis simply forgot to do its job properly.
• Being out of breath repeating a single sentence or even getting to the end of the first sentence was enough of a task in itself. Evening breathing ´in´ problems would sometimes last 4 hours.
• Earlier masseter muscle weakness whilst chewing was not all that prominent and eventually ´transferred´ into long term intermittent weakness in the superhyoid muscle area.
• Both voice and eyes would continuously go in and out of focus especially after heat exposure and would be relieved on contact with cold environments.

After the last and worst 3 month flare up which escalated to its worst peak ever, a sudden and unmistakable remission occurred on May 5th 2011. It came like an avalanche! Everyone noticed. It felt like a poison retreating over the course of 5 days. For example, On May 5th I could not lift a pillow without being out of breath however by May 9th I could lift 10 kilos, and most of the limb muscle weakness symptoms resolved 90% within those 5 days and without medication for MG. I remember staring at my hands over and over again wondering what I had done differently to make them work normally again (some actions like grasping took many additional months to strengthen)
The overlapping bulbar symptoms on the other hand resolved one year later in January 2012 on withdrawal of small sedative doses and then returned again with repeated challenge doses.

The joys of ´remission´........

I would dance just because I could and I would squeak like a little child…. ´Look at me everyone!!! I can zip, lift and swing my own rucksack onto my back and even carry it myself!´….`I can eat and cut my own food again!!! I can sit and eat my dinner without falling over into my dinner plate ☺ ....I can lift my arm to insert the visa card AND then hold it up long enough to press the code at the same time without taking a rest first!!!´The brain became extremely energetic, noticing and appreciating every single ´relearned´ muscle action during the next few months.
I never had medication and all the tests I took were negative (no SFEMG) A neurophysiologist and researcher in MG believed my story, and says I´m possibly in a remission lasting 2 years and thinks the blood test that I need simply hasn´t been developed yet. (I also initially had CFS which overlapped the myasthenic symptoms but of course was very different) Can a drug free spontaneous myasthenic remission without thyectomy provide 100% remission? Since I never had any positive tests then I will wisely keep my theory to myself!!!

During last year especially the going was getting gradually tougher & tougher. By inventing survival techniques my mind was kept busy in the same way that my body was physically occupied with all the myasthenic symptoms.
Those years of myasthenia were like an expedition up Mount Everest but without help and without the right kind of equipment.........
I´m not a sad or lonely person but this has got to be one of the saddest and loneliest journey I have ever made…..

Did you get any answers?

Did you get a diagnosis?
I have some similar symptoms. My Neuro-Surgeon said my problem was Neuromuscular.

Hello,

I have recently been dx'd with MG after years of suffering. My regular neurologist sent me to one who specializes in MG. Many tests were performed & finally I was dx'd with MG after my blood work came in positive for Acetylcholine Receptor Antibody (ARA)

I have had severe swallowing, speech & breathing difficulties over the years. I have been in & out of remission now for about 6 years. My last bout was so severe, I dropped 20 lbs. I am petite to begin with & tall. (5'7) My weight dropped down to 100 lbs. I was dehydrated & starving. I managed to pull out of that somehow, even before being dx'd with MG. Have also had some severe reactions to 'low dose' medications & mild sedation for colonoscopy where I nearly went into cardiac arrest.

Because I am 48 & reaching the cut-off age for thymectomy, I am being booked to see the surgeon. I will see him, but still not sure I will go ahead with it, unless they find a mass in my thymus. Still have not had the scan to see what it looks like.

I manage to eat these days, though much more slowly than normally. I have also learned not to panic when choking on food & actually 'breathe' through it! My weight is up again, higher than it's ever been, though I am not thrilled with the belly weight I am carrying now.

The only meds I am on, are mestinon (just started 5 days ago!) & Nexium, as I have pretty severe GERD as well.

The mestinon gives me severe twitching, all over, but it's the worst in my face - especially my eyes! I have not been sleeping well due to it. So after reading posts from many others in another group, I decided to cut out my evening pill - unless I am going out for a night on the town, which is RARE for me anymore!

I was dx'd with Fibromyalgia many years ago & just recently CFS, due to a second blood test coming up positive for Epstein Barr Virus. I've also tested positive with some metabolic tests that were done.. but no one seems too worried about the poor results (which makes me question WHY these tests were ordered in the first place!)

I am EXHAUSTED on a GOOD DAY!! It's a good day if I manage to get the dishes done, the garbage taken out, showered, hair & makeup done! Mind you, some days when I plan to go out, I am exhausted after showering, fixing my hair & makeup, so much that I won't even bother going out!

That said, it's LATE & I need to get to bed!

Good night all!

I hope they will give you treatment besides the Mestinon and the possible thymectomy! There are drugs to suppress your over-active immune system. There are gentler but slower drugs like Imuran and Cellcept, and there's also Prednisone, which can have bad side effects but could be well worth it for you, since your symptoms are so severe.

Trouble swallowing is a medical emergency, and more than justifies IVIg or plasmapheresis! These are very effective treatments for MG. IVIg involves three to five days of antibody infusions (through an IV. It takes about four hours a day and it can be done at home). I've heard MG patients refer to it as "the magic juice"--it works extremely well for a lot of people, though it wears off after about six weeks. There are people here who have it every six weeks. It makes a huge difference for them.

If you are twitching so much on the Mestinon, ask your neuro if you can try a smaller dose. Twitching probably means you're taking too much. Too much Mestinon can make you weaker. You might find it works much better if you take less (but ask your doctor first).

Now that you finally have a diagnosis, I hope you can get some of the very effective treatments that are out there.

Abby

This is more of a question. Have any of you found that along with MG you have also been diagnosed with a non-diabetic sensory peripheral neuropathy.

I have idiopathic neuropathy over my entire body, it started about 40+ years ago, now I have symptoms of sudden muscle weakess and sudden overall fatigue for no apparent reason. Tired eyelids and a need for enormous amounts of sleep. It used to be that I would recover after 15 or 30 minutes rest, but now it can be as long as 32 hours. Also, objects like cameras seem inordently heavy. My rib cage and longs are giving me fits with respect to feeling like the muscles and ribs etc are cold, and even on a hot day the air entering my lungs feels icey. Do these symptoms sound familiar to any of you that have MG?

These symptoms started about 2001 or so while and after I was doing my regular 3day/week work out at the gym. I had to reduce my weights to a minimum and do greatly reduced and mild work outs. Even so afterwards it was difficult to walk the 100 feet to the car. I has only gotten worse over time.

Hello everyone. I am 33 yr old old who was just released from the hospital and was diagnosed with MG.
When I went to the ER on Aug 8th they put me in the ICU because I was in crisis. I was on a vent for 16 days. While in the ICU they did 5 days of IvIG and that did not help. We then did 5 treatments of plasma paresis over a nine day period.
I am now home and trying to learn about MG and all my meds.

How did everyone else handle there diagnoses? Does it get easier? What should I expect?

I am so scared I will get sick and put back on the vent. What do I look for to prevent this?


Thanks!!