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

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

Hey :D

Hey I'm Quantum.

I was diagnosed with MG at 17, and had a thymectomy at 18. I struggled really hard ended up having IVIG, and everything in the early stages, and of course took mestinon.

After a few years (I was 22ish) the thymectomy kicked in, and I was really good for about 10 years. Lately (I'm 34 now) I've been having major issues.

I just got out of the hospital a couple of days ago, after having a major attack (breathing issues, ending up in the emergency room.)

Right now I'm trying to figure out just the right dosage of mestinon, and just taking a couple of weeks off.

That's pretty much my story :D

Thanks.

Hi, Quantum, and welcome. Posts to this sticky-thread sometimes don't get noticed. Feel free to start a new thread.

As you probably know, Mestinon has a very short half-life. If you feel like you're not taking enough, the first line of attack is to shorten the time between doses rather than to increase the dose (with the doctor's OK, of course). I hope your neurologist will also discuss the possibility of other treatments for you: immunosuppressants like Imuran, CellCept or Prednisone, and IVIg infusions.

Thanks for joining. This is a great place.

Abby

September 2nd 2012 I completed the Disneyland Half Marathon. The race was a bit of a struggle after mile 8 but I figured it was the heat. At that time I had no symptoms. 10 days later I was having blurred vision and I thought it was sinus related it will pass. A few days pass my vision is double and I am having a hard time keeping my eye open. I went to an eye doc who suggested MG and he sent me to an 2nd eye doc two days later who agreed and then on to a neurologist 2 days later. By then I was having symptoms in both hands and both legs. He confirmed the first two findings and did more tests and said I had classic symptoms and ordered plasmapheresis to begin on Monday October 1st two days later. By Monday morning I was at a point where buttering toast was a struggle. In two weeks I had gone from symptom free to crisis mode. I was told to start taking prednisone and began with 20mg every other day and I will be up to 80mg every other day within the next week.

Tomorrow will be my 5th and last plasmapheresis treatment and my vision has cleared up substantially. My hands are better and my right leg still is pretty weak. Found out today my ACHR Binding AB was 8.75 and while I know that is high I have no idea how high that is or if it relates to the severity of the symptoms.

The treatments are helping but I have a lot to learn about MG and I hope to learn more here.

Lots of Questions... No Answers... Help?
 

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

Hi, Joe. I'm sorry I don't have any suggestions for you. I just wanted to say that the sticky thread ("Your diagnosis, treatment & other information") sometimes gets overlooked because of the format of the forum. You might try posting your question under a new thread (click the "new thread" button on the upper left). There are people here with a lot of general medical knowledge, and someone might have some ideas.

Abby

I've been posting here for a while, but I'm finally responding to this thread. I've only recently been diagnosed with positive modulating antibodies by a Rheumatologist. I know it's not the normal doctor to see, but he's the only one that has dared to treat me.

Many years ago, over ten years, I came out positive for modulating antibodies, but when tested again I was neutral. I was drinking a lot of caffeinated soda at the time so that may have altered the results. Through the years I've had more tests that came back negative - probably because of the caffeine. I no longer drink sodas and now the test is positive again.

The muscles that are affected are my upper eyelids and forehead, the muscle under my tongue, swallowing muscles, neck weakness, trapezius weakness, upper arm weakness, diaphragm weakness, some of these bear down on my spine and rib cage. My upper thighs are also weak. I get double vision too especially after reading for too long. The muscles around my mouth droop often. There's probably other things going on that I can't remember right now.

I just had a lumbar x ray with a few vertebrae into my thoracic to see the damage. I've tried to convince other doctors to check out my spine before and it never happened. At least this Rheumatologist is really trying to help. He specializes in auto-immune diseases, so I think I'm in good hands. My GP sent me to him because she thought I had some other disease relating to Rheumatology. Some of my symptoms sound like Polymyositis and maybe I should ask for an anti-jo antibody test. I'm sure it's possible to have MG and Polymyositis.

You really have to be proactive about making sure that u find a neuro that specializes in the more rare things like mg my first doc over prescribed me because he didn't understand what he was dealing with and almost killed me before my family doctor stepped in and sent me to a hospital in a major city that understood what they are dealing with

Hi Beannie, I'm brand new here, but have been in the docs offices for years getting diagnosed (they had no clue, was seeing rheumatologists for years). My neuro said that new literature points to the idea that the bloods are almost useless, because they are most likely many many antibodies that can cause mg, and our current system tests for very few.

I am waiting for my MuSK and LEMS, but he already gave me the mg diagnosis. I have all the LEMS symptoms with dysautonomia but he still strongly feels that it is mg (from the SFEMG), he says mg does NOT fit in a box and his patients present in very different ways. I have sensory weirdness and so much other garbage, he could see through the mess and I finally have a diagnosis. I hope that your doctors listen to you and take you seriously, it took me an unbelievable number of years of ER visits to get a doc with a clue. Good luck to you!

Diagnosis issues with M G
 

Hi
I was hoping you could help. I have been having muscle issues causing
face drop
head drop,
vision issues,
limb muscles weakened,
breathing issues.
Speech dyastheria

I have been in hospital had nerve tests, blood test but neuro consultant said they are clear, but still looks like mg.

Can you tell me if those tests are the only way for a diagnosis or can I ask for something else. These melts are ruining my life and I really want to get to the end of the issues and wondered if you could give any advice?

Starting to think I am going crazy and I am making it happen on purpose.

Any advice will really help.
Thank you
Christine

Hi, Christine. I'm sorry you're having such severe symptoms and that the diagnosis isn't clear.

Can you be more specific about the tests? First the blood tests: MG is caused by antibodies, but there are three different antibodies commonly tested for. The most common of these is the AChR antibodies. Some people who test negative for those have the MuSK or LEMS antibodies. A neurologist should test you for all three. You should also know that a significant number of people with MG test negative at first, and positive later, or sometimes keep testing negative. Do you know if you've been tested for all three kinds of antibodies?

Second, can you describe the nerve test? Do you know if it was just an EMG or a single-fiber EMG? A single-fiber EMG is a lot better for testing for MG. If it was a single-fiber EMG you had, it would be like this: the doctor would insert a needle into your muscle (arm, thigh, or face, usually) and then ask you to clench the muscle slightly for maybe ten seconds or so while the needle stays in.

If you didn't have all three blood tests and a single-fiber EMG, I would suggest finding a neurologist who specializes in the diagnosis of neuromuscular diseases. There are many of us on this forum who have never tested positive for any of the antibodies, and who were diagnosed by single-fiber EMG.

Abby

I was diagnosed using the Tensilon Test in the hospital during an exasperation in Jan. of this year by a neuro specialist. Since then, like you, my other tests are "normal".
Because of that I can't even find a neuro to treat me.
I have the trunk issues like you. It also affects my ability to hold my head up for any extended period. It also affects my respitory muscles to the point I have been intubated.
I am glad that you are being treated with Mestinon. I am on that as well as CellCept. The hosp. neuro put me on them and my PCP refills them for me.
:highfive:

Ruro72
 

Stellatem I am trying to locate some one who has actually been diagnosed with Lems. I was diagnosed 9 months ago and so far have not been able to locate anyone else in Australia despite lots of people trying for me. Many thanks.

New to this site
 

I have Congenital Myasthenic Syndrome. It is rare, and even more rarer then
MG. I doctor out of Mayo Clinic for it. Lived the majority of my life thinking I had a form of Muscular Dystrophy until about 6 years ago, when I was diagnosed with CMS. I have been blessed because I was so sick, weaker, had a gtube to feed me, and had full time care. Now I take Albuterol 3 times a day and I no longer have a gtube, no longer need full time care, and I am tons stronger then I was 6 years ago. I have to doctor for this condition at Mayo Clinic. I live in Ohio and noone here knows how to treat it. I would like a sense of community with other MG or CMS patients. I want to hear others stories. I hope I can find that here.

Hi Christine..
I too experienced a lot of the same issues you do. MY lips get numb at time, my speech sounds like I have been drinking as well as my right eye gets drropy. Since I was diagnosed and placed on Mestinon and Mycophenolate, it seems to have helped. I still have episodes when I get realy tired or stressed or try to chew too much. But no your not going crazy it all seems to be part of the disease.

Ron

Alkaloids in nightshades have effects on neuromuscular junction
 

It depends on what you are classifying as a nightshade. To a vegan there are thousands of plants they call nightshades. Most belong to an order called Polemoniales, and they are loaded with alkaloids. They could have hundreds of effects on the neuromuscular junction or none. Proceed with caution. In particular, anything with belladonna would not be good because the atropine is and anticolinergic and the opposite of Mestinon.

My experience with MG is that exotic dietary changes will flip your symptoms all over the place. I would abandon veganism for awhile unless your dad is under the care of a good physician who knows natural pharmacology, neuromuscular diseases, and molecular immunology. Let us know if you find one.

*admin edit* Note what they say here shows that some nightshade alkaloids act similarly to Mestinon, a cholinesterase inhibitor.

*admin edit*

Myasthenia story
 

Where i live in florida...they don't know much about MG.... so for my family and friends...and so that I dont have to repeat over and over again to people my story with our disease i made a montage video for everybody to see a little of what i've been through nothing special but people dont understand how hard it is sometimes....search my video on youtube called Myasthenia Gravis (my story)

Imuran
 

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.

Neuromuscular symptoms without a diagnosis
 

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 am having all of these symptoms and negative blood work for mg but neuro sending me to another neuro, he wants muscle biopsy.

Would Chia seeds be a good part of this if they were sprouted. I use Chia seeds as a good source for Omega3 Fatty Acids; the sprout recipe sounds wonderful.

Omg...
 

My wife made me do it.... she placed this forum on my favorites page and told me I should read... I have had double vision for 19 months. Saw opto, opto neuro and then neurologist. I examined and found nothing wrong. In discussion before leaving his office, he gave scrip for Mestinon. IT WORKED. Life was getting better... until some weaknesses began last year. Went back to neuro. He did tests, tests, tests. All came back normal. Passed me off to an associate who gave me a half-assed examination and said it was all psychosomatic. Nice... I figured myself to be a nutcase and decided to endure.
My endurance has failed me more and more. Weakness in arms, legs. Swallowing issues increasing. Got Mestinon and it works, for awhile. Have to drive home at end of day with one eye closed.
As I read, I feel like I am not only one in this situation. Still, not really wanting to go back to a Dr. and have him tell me I am imagining all of this. Unfortunately, it is a drag. My loving wife is supportive but I hate having to lean...
Thanks for listening. Glad I am not alone, even if nothing else comes of it.

Newly diagnosed with MG
 

Hi all, i have just been diagnosed with MG and here is my story.

Around 2 years ago I started seeing badly, and I thought it was just my age, 50, and thought I just needed new glasses. Before I could visit the optician I got sent to Asia on assignment for the whole of last year. I thought the heat was going to kill me, and I was not at peak performance.

Fastforward to this year.

My vision was getting really bad, so bad that I felt unsafe driving, esp. At night as the oncoming cars all had 4 headlights. Decided that now i have to go to the optician for new glasses. He referred me to an eye-specialist. Eye specialist took one look at me, and referred me back to my GP and said she must send me to a neurologist and for CT and MRI scans as I have ptosis and he suspected a tumor pressing on my facial nerve.
It was at that time that I discovered a lump in my neck, and I thought i must've picked up some infection or something in Asia.

Well, got sent for the scans and immediately referred to a ENT. They did a biopsy and said it was a Scwannoma on my vagus nerve, that also presses on the facial nerve and the nerve responsible for swallowing, but that they would wait and see how the tumor grows, as removal would be very risky. Ok, I thought, will just have to get used to this, as there is nothing that can be done right now.

A couple of weeks later I discovered I cannot open my right eye on its own anymore, but I could open it if I open both eyes simultaneously. About a month later, the same happened to my left eye, and a week later, if i close my eyes, it became impossible to open them again without using my fingers. I also stopped breathing when I tried opening my eyes. To breathe again, I must shut everything out of my mind, force myself to relax all my muscles, and then I can breathe again. Back to the ENT departement at the hospital. More tests and then I heard that it has nothing to do with the tumor. Got referred to the neuro and had to wait for more than a month to see her.
In that time I learnt a couple of techniques to open my eyes, without physically opening my eyes with my fingers, like lifting my left arm up, and then suddenly flicking my left index finger, or sticking a clothespin besides my eye. That hurt like hell, but as long as pressure is applied on certain spots around my eyes, I could open them.

Finally I got to see the neuro. She specializes in MG diagnoses and does a lot of research. (The hospital is a university hospital). Whilst waiting for the blood tests to come back, she placed me on Mestinon. 60mg every 5 hours. Finally, after 6 months I dont have to go through ridiculous means of opening my eyes, I can lift my right arm above chest height and still breathe.

I see that the mestinon stops working after 4 hours, so I have to take it then, and I am now on 70mg, as on 60mg my eyes would still fall closed if I lift my right arm.

More appointments and tests with neurologists in the pipeline as soons as the bloodtests come back, but at least I am starting to feel like a functional person again.

Just my bad luck that I got both conditons at the same time, both affects my eyes, swallowing, voice, etc (well, the tumour only affects half of my face, half of my vocal cords, etc).

Had problems since 2008. Been to so many ologists it's not funny. Diagnosed with Lupus Lyme Disease MS SLE Wegeners Lou Gerigs Vasculitis Psoriatic Arthritis Inflammatory polyarteris giant cell arteritis fibromyalgia chronic inflammatory disease ankylosing spondylitis and kidney cancer. So I should be dead by now, right? Not so fast! LOL. That's what happens when the docs don't know what's wrong with me, they throw a diagnosis out and never follow up with me
One even told me "If it was anything serious you'd be dead by now!". Hard to keep smiling when you hear that, but still. Only ones so far the majority have agreed with is fibromyalgia. Still possibility of lupus. However about a month ago had to go to ER because I was so weak I couldn't stand or walk. Breathing was extremely difficult and speaking next to impossible. Pulse was 106..probably from breathing problem. Pain in chest and shoulderblade.Did chest X ray. Sent me home after 6 hours..no diagnosis. Three days later, same thing. In meantime energy level had been at all time low and breathlessness continued along with weakness. Second ER visit same symptoms. Did another chest X ray cat scan of brain. No diagnosis. Sent home after 6 hours again. Seen ENT doc and speech pathologist since then
Both saw me in 'crisis' mode but other than slight bowing and slight thinning of vocal cords, no diagnosis. Referred me to rheumy and voice doc. Not seen them yet. GP did blood test for myasthenia gravis, just came back negative. Still wants me to see neuro doc..got appointment for two days from now. .impressed! Every day more or less the same...energy/weakness varies, breathing/voice problems come and go. Mostly resting helps. Walking any distance wears me out and affects my breathing..get dizzy or struggling to breath. Legs are wobbly, used to be just right side but now left too. Use cane because I tend to stumble. Need wheelchair when we go out-rarely. Live in the South so humidity makes breathing and walking more difficult. Had wheezing episode the other night which progressed to coughing then vomiting/choking. Life kinda sucks. Need my wage but I'm on short term disability so having financial problems too. Some days it's hard to keep going. Well, that's me.

Welcome EnglishSue. :Wave-Hello:

Welcome Hfleming. :Tip-Hat:

Hi Darcie. Just fyi I am truly empathetic regarding your symptoms and the reaction you get from some 'specialists'. I was told by one neurologist that my problem was my posture!

Dr. is still "practicing".
 

Interesting to note that Mestinon works for my double vision, at the beginning of the day. As the day progresses and as time progresses, things get progressively "worse". Dr. says he doesn't know why Mestinon works for the double vision because this is all "psycho-sematic". Of course, he can't explain anything (double vision, left side weakness, swallowing difficulty getting worse, ...), therefore, nothing is wrong.
It is nice to have a place to vent and see that we are not alone, even though these docs seem to need a good waking up....
Wife pushing for me to go to another Dr. Last visit convinced me that it is not worth the effort. Not sure what the answer is or may eventually be, but symptomology used to be an indicator of the problem. All of these symptoms just lead to "imaginary"? Odd. Thankfully, my wife KNOWS because she SEES all of this daily.

Negative Test Results
 

Ok I'm new to this so I apologize upfront for any miscues. My symptoms started 8 months ago mainly being out of breath and as the summer approached my symptoms worsened to include general muscle weakness and fatigue upon exertion. My arms and legs feel like they have lead in them, difficulty swallowing, shortness of breath, blurred vision. I went to primary care and had complete blood workup all negative. I was sent to a cardiologist for a complete work up including heart cath all negative. Then on to a Nuero his intial comment was MG he did one blood test and an EMG on my right extremities both negative he then changed his diagnosis to Malaise wasn't aware that was a diagnosis. Then 2nd Nuero his initial diagnosis was MG as well. He has done MRI, complete EMG, sleep study, and more blood work that he said should have been done to date all negative, except for sleep study I don't have those results yet. He started me on trial dose of Mestinon 60mg 3x daily seems to help some. My follow up with him is tomorrow the 17th any suggestions on what I should ask or other paths to take. This affects my ability to work. I read something on another thread that read ´Specific sets of fluctuating muscle weakness that are exacerbated by heat & repetitive muscle use, improve with rest and cooling´
That describes my symptoms exactly and I'm wondering what else it could be the only reason I think I have MG is because that's what 2 Nueros thought upon examination. I hate to admit this but I had never heard of MG prior to seeing the first Nuero. Thanks for allowing me to vent I would appreciate any advise from any member willing to respond. Thanks

My long road
 

My muscle weakness started with double vision after I had a meningitis/encephalitis during my second pregnancy. The doctors blamed it on the disease. Five years ago I was diagnosed with psoriatic arthritis and Ehlers Danlos syndrome, possibly type 3. I take plaquenil and methotrexate to control the inflammation in my joints. Three years ago - out of the blue - muscle weakness hit me really hard. I had problems with chewing, swallowing and breathing. The neurologist told me it could be MG, but the tests came back negative. I had RNS EMG and a single fiber EMG of my eye. I was dismissed.
I muddled on, but last April talking became almost impossible, and I had to start using a wheelchair since my legs became to weak. My PCP sent me to another neurologist who revised the tests that were performed earlier. Same outcome. Blood tests still negative.
Unfortunately my lung function has deteriorated rapidly and I was admitted for tests to determine if I needed nocturnal ventilation. So far, that's not necessary, but my coughing force is extremely low and I had to start air stacking.
Current situation: slurred speech, difficulties breathing, restrictive lung function disorder, difficulties swallowing and chewing. Neurologist number 3 thinks it's MG, but does not offer any treatment since the sfemg of 2012 was negative and I have no antibodies.
The pulmonologist says: neuromuscular disease, but offers no treatment because I don't have a real diagnosis.
I've lost my health, my job and a large part of my life. I think it's cruel to treat people like this. I already have another autoimmune disease plus a hereditary connective tissue disease, EDS. Why not offer me a test treatment? I have all clinical symptoms of MG. Everybody says I have MG, but they can't prove it. Sorry about the rant and thanks for listening.

Skyler, Since you are on Methotrexate, the antibody tests would most likely be negative! That's what those drugs do—get rid of the immune attack that causes antibodies! Stupid doctors.

Did the do the MuSK antibody test? Did they even consider a congenital myasthenic syndrome?

Have you been tested for lupus?

Do you live in the UK by any chance?

Please do a post in the regular part of the forum so we can help you!!! You are in pretty bad shape.

Annie

Hi, did you ever find/get answers to your symtoms? :oSo similar to mine.

get vitamin d3 checked asap
dr calls it vitamin d 25 hydroxy test
bet its under 30 actually guarantee it is..

baby MG
 

hi my baby was diagnosed with MG weak eye muscles,so depresed she is 1 yr n 7 months,

My heart goes out to you
 

Wena, I'm glad you posted, and I hope you realize there are a lot of people on this board that will support you. Getting a diagnosis is the first step in managing MG, and you have that. Your baby may have a genetic version or it may be due to antibodies, but at least you know what you are dealing with. You don't say where you live, but there is probably a support group somewhere in your area, and I would encourage you to find it. Good luck to you, and please keep us posted.

:hug:

Rose

Do I have MG?
 

Hi all,

For me, it had started about 10 years ago, with body pains and weight gain. I visited Ortho, but he said nothing serious, and prescribed some exercises. With exercise, the pains would only increase. After a great deal of pain, stress, finally i was diagnosed with Subacute Autoimmune Hypothyroidism. Taking medication for it for the last four years has not improved my pains a bit. Now it has only worsened. I have chronic chest pain, swallowing difficulty, pain at the back of my left leg (MRI revealed one hypoechoic region at the sacroiliac joint which was surmised to be idiopathic edema.), breathing difficulty, and progressively weakening left side of the body. When I visited the doctor, he burshed off the symptoms as GERD, though I do not have belching and heart burn. Medication for GERD does not improve things either. Though I had undergone endoscopy once, and it revealed patulous esophageal sphincter.

So far, there is no ptosis, but I can feel that there is some issue with my left eye. After I apply Kajal, I can notice that certain portion of my left eye lid is slower to return to normal position after being stretched. And often, I involuntarily squint the left eye when sitting idle till I notice it and set it right.

I have a hunch that I could have mild MG with thymic abnormality, but no doctor is taking this seriously. My chest pain fluctuates and sometimes it becomes terrible to bear. In those occasions, all I want to do is to lie down, and do nothing. I also have mild cervical spondylosis.

I got x-ray done, but it revealed nothing. CT Scan is too expensive. Please advise me.

My story, short version
 

I don't have an official diagnosis yet but. .. have a thymoma, mestinon really helps, and I have a lot of the muscular symptoms. Waiting for blood tests and emg (which was really, truly awful, as all of you know. ) I was a marathon runner, and now some days I can't make it .25 miles. Some days, like today, I push too hard and screw up the whole day. I'm lonely and scared... and trying to manage the holidays with four kids seems impossible.....

I'd spent most of a decade having "collapsing" spells where I would get dizzy and confused and fall down. I accepted that I was probably "fainting" for most of that, but after a few years it became very clear that I wasn't losing consciousness and that the main problem was muscle weakness. I looked for answers from a neurologist, especially as the collapses became more and more frequent and the muscle weakness became more pronounced and frequent.

I got a TDAP vaccination last April, and was too weak to walk for most of the following summer, spending my time in and out of a wheelchair. I went to a lot of doctors and got a lot of frustrating responses (I especially enjoyed being told it was all in my head by doctors who refused to do any sort of tests).

Eventually, it turned out I had two problems. My 'dizziness' was caused by cerebellum lesions (that appear to be old). I ALSO had Myasthenia Gravis, and my full collapses tended to happen when I was BOTH dizzy from my lesions and weak from MG. The fact that I had two issues made things even harder for the doctors to diagnose.

At this point I'm on Imuran (though it's too early to tell if it's helping) and Mestinon TR, and maybe 3/4 of all my days are manageable. I can walk, though I might limp or look really funny doing it. The remaining quarter of my days have me too weak to safely walk (or sometimes to even unsafely walk), and I use a wheelchair or a walker. Sometimes I can't see or talk or breathe or swallow right, but that tends to be relatively infrequent.

atypical MG
 

Hi, Abby! I have seronegative MG as well; no antibodies. At one time, there were 2 (out of 3 they tested for at the time); I've never been tested for musk. I get that trunk weakness and have to be careful if I lean forward to adjust the miniblinds in the window, I get this back and forth tremor like my body can't balance itself and my head wobbles and feels like its going to tip me into the window. Like you, if it's down in my legs, it's a really bad spell. Mestinon did not agree with me, made me incredibly jittery and sort of jerky feeling. Prednisone is what I rely on to pull me out of bad slump, I don't take it constantly, just if I am crashing. I have had short and long remissions, usually several months every year, and it seems to cycle on its own up and down. There are always down cycles that I iknow the cause of -- a virus, overdoing, big time emotional upset, etc. But it does definitely cycle on its own and is, to me, one of the most challenging aspects of the disease. Do I suit up for my good days, or for my bad days? I recently had such a bad low that I had trouble getting oxygenated for the first time ever, quite scary. I had to make some significant changes in my life to make my life manageable when I am in a down, including letting my dogs go to other homes and sending my son to live with his dad, don't know if its permanent or not. Very hard, but you have to rest aggressively and do all you can to stop the downward spiral so you can enjoy the respites!