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…..

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.

Hi, Roy. I don't know anything about neuropathy, but your symptoms definitely sound consistent with MG to me. I hope you can see a neurologist soon. There is a blood test for MG (if you test positive, you definitely have MG. If you test negative, you might still have it). There are drugs that help a lot.

Please know that MG is nothing to fool around with. A crisis can come on really fast. If you are struggling to breathe, or can't swallow, it's a medical emergency. Go to the ER or call 911.

Please feel free to ask questions here.

Abby

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!!

Hi, and welcome. Please feel free to ask questions here. The people here are incredibly helpful.

First, what medicines are you on? We can give you tips about taking different ones, and what to watch out for. I'm guessing you're on Mestinon (pyridostigmine is the generic name). This is very helpful for controlling symptoms, but sometimes the dosage takes a little tweaking. If you find it bothers your stomach, take with food. If you find it makes you twitchy, you may be on too high a dose. If you find it works but wears off too fast, ask your doctor if you can take doses closer together instead of taking more (it does tend to wear off fast). There's a time-release version for people who are bothered by symptoms in the middle of the night--better than getting up to take a pill every three or four hours. One more thing about Mestinon: too much can make you weaker. Just something to be aware of.

Are you on Prednisone, too? Did you just start taking it, or were they giving it to you in the hospital? I ask because you need to be careful in the beginning with this drug. Sometimes it makes myasthenics worse for a bit before it makes them better.

Above all (I don't know if I need to tell you this after what you've just been though!) be careful. Any new symptom, or sudden worsening of symptoms, needs to be taken very seriously. A crisis (as you know) can come on fast, so don't take any chances. Call an ambulance.

Try to learn your triggers. I think all of us find that too much activity brings on symptoms. Any kind of stress is bad (I know, that's a tough one!) Many of us have trouble with heat. Be careful with drugs, like antibiotics--some of them make MG worse. Ask your neurologist before taking anything new. Don't assume your primary doctor will know.

Phew, I know this is a lot at once! Please ask questions here. It's the best way to learn, and we're all eager to help.

Abby

I am worried about starting Imuran. I am taking Mestinon 60 mg 3x/day and timespan at night. I still am SO TIRED and my Neuro says I am uncontrolled and wants me to start Imuran. I worry about infection. Also how long does it take to feel better? I am not sure if I'm posting this in the correct place.... . I am not experienced on this site yet. My Neuro seems certain I have Mg, but both antibodies tests are negative . I haven't had the Lems test. So could I have something different? My eye droops, my legs feel like lead when I tire which seems all the time now. I do have trouble swallowing at times and breathing is more difficult. Should I insist on a positive diagnosis before starting Imuran? My Neuro says no other ailment presents like mg. I still am concerned. Should I start Imuran as he suggests? He does currently treat 25 MG patients besides myself. I appreciate you taking time to respond. Thank you.

My story is a long one....16 years without answers (I will admit that I had decided to live with my symptoms and not see any more doctors because I never received answers)...
1997 - promximal arm weakness - I was a choir director at that time and had been able to direct entire rehearsals. It got to the point that I could not direct one verse. Doctor diagnosed me with hypothyroidism. Treated and within normal range, but symptoms did not go away.
1998 - discovered that my grandfather who died before I was born had a form of muscular dystrophy. Convinced that was the cause of my symptoms, which included thigh fatigue, upper arm fatigue and chewing fatigue, I went to the Hershey Medical Center and was told I did not have muscular dystrophy. Still not convinced, I had DNA testing done around 2000-2001 and discovered I had one genetic marker but not both for Fascioscapulohumeral dystrophy.
I have seen a neurologist who simply read diagnoses from a book (yes, while sitting in front of me) and could not determine a diagnosis. I saw a physiatrist who did EMG testing and said I was "grossly normal" and maybe had a variant of muscular dystrophy.
Now - my symptoms of thigh fatigue, upper arm fatigue, chewing fatigue, occasionally base of tongue fatigue, slightly droopy eyelids and now vocal cord fatigue are starting to affect me more...at this time my muscles are sore. I hate my elbows to be bent. I have a hard time falling asleep due to discomfort at the end of the day.
I am a speech therapist and was aware of Myasthenia Gravis, but more so when speech becomes dysarthric. My speech does not slur, but in the past 2 years, I have progressive problems with my voice. It will tire and hurt to the point that I can almost lose my voice while singing...but it does come back fairly quickly with rest.
Could I have a form of myasthenia gravis? I want to see a doctor and determine, but I have moved to a fairly remote area (Idaho). How do I find a good doctor who understands myasthenia gravis in all its forms within a 4 hour drive or so? I could go to Salt Lake City, Boise, or here in Idaho Falls...I just hate chasing another avenue and being disappointed with no answers....again! Any thoughts? Thanks!

I've been suffering fatigue, poor concentration for several years. In March, I had a virus/high temperature and started to get burning in my palm and fingers. A month later, I had another virus/temperature, and since then nerve pain has spread to all four limbs.

Symptoms include muscle cramps, it feeling like a saw's been taken to my wrists, needles and burning in my toes, sensations like my fingers breaking. My walking's also been affected. Legs sometimes go weak, and feels like I'm drunk below the waist. Muscles in shins and forearms sometimes go rock hard. It feels like needles are pushed in my finger joints. There are times when the nerve pain leaps around my body like tasmanian devil. In fingers, then hip, toes, arms... a few seconds in each... brief pause, then off it goes again! It's like living with a small, malevolent gnome who's equipped with a hammer and a spike.

MRI scans show nothing. Neck x-ray shows some deterioration, but I've no pain in my neck. Traction tried... no change in the nerve pain I had in the hand (at the time of the traction).

They've tried me on gabapentin (no impact on nerve pain, but I felt as high as a kite - and incredibly happy!). Walking was getting worse quite rapidly and I was existing on 3-5 hours sleep a day with nerve pain preventing me from sleeping.

Then they moved me to pregabalin. A little improvement in nerve pain, definite improvement in walking and some improvement in sleep, but some side effects I don't like. My hands feel like they've been dipped in oil (a really horrible sensation). I have 'brain farts'. I do a lot of writing, and reread a paragraph to find 'word substitution' and on rare occasions I've missed a letter out (imagine a paragraph with no 'e's). I also feel grumpy. Ratty as hell. It's not me, I don't like it.

Next we're probably going to try duloxetine as the side effects of pregabalin aren't pleasant for me.

The neurologist is convinced I don't have MS. While I do have diabetes, the symptoms all started in the hands and only recently moved into the feet. I don't have the tender spots you'd experience with fibromyalgia. Tests have ruled out lupus. The closest I have to a diagnosis is an odd variation of chronic fatigue syndrome and maybe a bit of diabetic neuropathy too.

..the most recent weird symptom is a feeling that my hands are slimy. I can't find any reference to this on the net. Washing doesn't help. It lasts anywhere up to a day, then *poof*... it's gone? Argggggg

Does anyone have any ideas (or does my ex-mother-in-law have a voodoo doll and set of pins)?

Joe