Also, about 6 months ago, my gait started to go funky. People started asking me if my knees hurt. Now I walk much slower with a wide gait where my toes are turned out. If I try to run, it doesn't work.

Welcome to our family and please become a prt of it . If mestinon works you either have MG or gulf War Syndrome . Thats what it works on . There are other meds that help as well . I take mestinon , cellcept , and some prednisone , but I am weaning off prednisone some now. I started with the droppy eye and slurring words and they called it ocular mg , but after a year and 1/2 it went to generalized mg . Your life is in for a change and I am not going to deny that . BUT always remember there is life after diagnosis of mg . Hang in there , Charlie

Sorry for your problems, but don't be surprised by the reaction of some doctors. I have many negative tests but clinical observation has shown MG with exacerbation. I am thankful I have a neurologist that is not glued to the text book as many others are. MG, like other autoimmune diseases, is highly unpredictable, and the immune system is complicated. Even on this site, you can find some great advice and friends, but do not count on following a certain path of positive or negative just because others have. We are all unique. Hang in there and be happy that the mestinon works for now. Your story is much like my own in the beginning.

God bless,
Steve

Welcome to the group. A goldmine of information on this site. Use the Search bar to enter key words and it will bring up old posts of topics discussed.

Like Charlie said, Mestinon only WORKS on a few things. Like Steve said, a "negative" test (blood, electrical, otherwise) is NOT always indicative of not having myasthenia.
BLOOD = you are probably in the small percentage of myasthenics who have an unknown circulating antibody causing the problems ; since it is unknown, they are not even looking for it in your bloodwork, they're only looking for the known antibodies. ELECTRICAL = you are at the mercy of the technician. These tests (SFEMG, EMG, RNS, Tensilon, ...) are difficult to administer and interpret. My technician was new, timid, and very caring. She was afraid she was hurting me (indeed), but was astute and conscientious and knew she was not getting the correct results (elusive nerve), so she brought in my old salty Neuro ; he banged me up and zapped the crap out of me for about 25 minutes, getting the data captured on his monitor and proving my condition.

MESTINON = I'm so glad it works for you. A lot of us taper/titrate our mestinon depending on how we feel and our activity level. Be careful, you can take too much mestinon, and it will make you worse. Talk to your doc.

Interesting about the Adderall, I know we've talked about it here in the past. I'm happy you have a physician that is treating your illness, regardless of all the test results. You've had a long road, and 2 years is not uncommon (a lot of those here w/o ANY treatment).

GET A SLEEP STUDY DONE = My neuro ordered it my first office visit. Make sure it's the overnight one. Our neck weakness predisposes us to sleep apnea, very common. I did NOT have sleep apnea prior to MG.

REST = take a nap during the day. The overall exhaustion and fatigue is real and overwhelming at times. It is not as known/realized, but quite a reality to us.

DIET = eat healthy, limit processed foods. I am gluten free. I limit meat (except seafood) and I limit dairy as well. I definitely still have MG, but the exhaustion is markedly less, plus it's better for me anyway. Very little alcohol, no smoking.

This disease is life changing, but manageable. This site is a game-changer for me ; we share information and support each other. It's very empowering, especially when having such a rare disease that makes you feel so helpless. If you have any local MG support groups, seek them out.

You are on the right track. Keep us posted.

Take Care. Chris.

Thank you for the advice and encouragement! This thing has been such a roller coaster over the past few years. I went through a long period of the daily swings in strength, fatigue, vision, breathing, swallowing and walking issues. Now that I am on the combination of Mestinon and Adderall, the variability is much less noticeable. I do have a tendency to plateau over months, and the I'll get sick and take a backslide where I do not recover to my previous level. I keep hoping that this thing will level off and stabilize. I am doing very well over the past couple of months, and if I were to remain at this level moving forward, I am good. I am tired of doctors, specialists, tests, and being told what I do not have. I am told the Mayo clinic is my next step, but I am concerned they will give me the same answers as every test conceivable has been done. At this point the mess work, and I am okay riding it out to see if it gets any worse. One other thing that happens when I am off of the Mestinon is my voice gets very soft and sometimes hoarse/gravelly sounding. About 34 minutes after taking Mestinony voice is back to normal. I also get tired of being told I look stoned/mad/blank-faced when not on the Mestinon. At times I get busy and forget to take it until someone around me makes a comment. Anyway, thank you again for the words of support and advice!

Do you also have an enlarged thymus? I didn't see that you've mentioned it anywhere and that one is a sure sign of MG.

Welcome from another seronegative, SFEMG negative, Mestinon responder!

My journey has been long and complicated. I have other rare (?autoimmune/metabolic) issues and had my share of "I think you should talk to someone....." ie I don't know what is wrong with you, see a shrink.

The doctor who prescribed Mestinon for a test and described its results as "a Lazarus effect" now says I don't have MG but is willing to leave me on it as "it isn't a drug of abuse". So I notice getting weaker between doses, words slurring when cold or have slept poorly. But I'm leaving on a 2 week cruise this week in order to travel while I can. I'm taking a walker, collapsible walking sticks, cooling scarf, tons of meds and clothing for hot and cold weather. Keeping a postive view on life is important with this or any difficult disease. My co-worker's partner just died at 54 of the human variant of Mad Cow disease, so I give thanks for what I can do!
Flutebell

My Thymus gland is normal.

Sorry to hear about your problems and the difficulty with diagnosis. It leaves you in a difficult place with doctors and treatment.

Your symptoms sound a lot like MG and that Mestinon helps makes it more likely.

If you had the tests some time ago, it is useful to repeat them again as many folks show up negative and later have a positive test -- that includes the antibody tests.

There are additional tests for variations of MG that can be taken too.

Good Luck, and welcome to the group.
'

Welcome to our group, I have found the people on here to be very helpful and supportive. I just started at the University of Maryland Neurology Dept Myasthenia Group and IVIG and have told everyone how helpful and supportive everyone here has been. Wishing good things for you. I have found that it is a frustrating road but that people with this disease are very supportive of one another.

Although I don't wish this situation on anyone, its calms me down a bit to see a couple folks who are "in limbo" like I am.

90% of my difficulty is leg weakness and overall fatigue. No eye drooping, but my Neuro often "tests" my eyes by holding my head still and making me look up for sustained periods. He says he notices some fatigue in my eyes.

All blood, electrical, MRI's came back normal with one small exception and that's a small syrinx on my thorasic spine. Nuero doesn't think its anything but am waiting for Neurosurgeon to call me for an assessment appointment.

All that said, I'm not diagnosed, but feel like my Nuero is treating me like its MG.

Currently on Predisone 30mg (going up 10 Mg every 2 weeks per my Neuro), Pyridostigmine/Mestonin (see my other post about the change today). Mestonin had been helping and Predisone, as I tell my friends, "doesn't make me STRONGER in a sense that I can do physical activities, but gives me STAMINA to just get through the work week without needing to collapse". Although its close.

Wife and I have changed our diet to very similiar to what MGOhio said...IT HELPS. 43 yr old male here who needed to lose some weight, so feeling better. Had 1 beer last night for the first time in 2 months and WOW--immediately was feeling flushed in the face and weak. Not sure if it was the beer, or the end of a long work week, but woah. Also felt like i had to take deeper breaths than usual.

Ok, I've rambled enough, great group here!

Thanks all.

Best wishes to you! Welcome to the group. We totally understand how you feel. I was very active too, and I have learned to appreciate life in a different way. I find joy doing different things, although it is frustrating. Ask questions. Make sure you learn about treatments for MG, and aggressively pursue them! Mestinon treats the symptoms, not the disease itself. I was on prednisone, Imuran and mestinon for two years and improved some, but started going down hill again. Nine months ago I started IVIG. It has worked wonders for me. There are triggers of MG: stress, poor diet, lack of sleep/rest, heat, humidity and infections. We are here for you.

Hi. I am somewhat new here too. It has helped me a ton with the support knowing your not alone. Also asking others on there experience on treatment options. I'm not sure what Mayo you are close to. But if it's Phoenix let me know I'll look up who I went to for a second opinion. They where helpful
Jen

I just joined too. Diagnosed in April. Still trying to cope. I had strong side effects to the mestinon and the doctor halved the dose. Now I'm leaking urine with no pressure. Double vision on and off. I tire so easily. But I so try not to complain. My husband worries about me so. Man, can we share vibes of understanding!
I don't want to go on prednisone, but is this next?

Welcome. I'm new too. I had trouble diagnosing but in the end know what helps and what doesn't. Mestinon is great for me but as others note treats symptoms not the illness. Nothing to complain about there of course!
Besides meds the other advice on healthy eating, resting de-stressing etc is all good advice in my experience.
For diagnosis, you will have seen the various options (bloods, electrics etc). I would just add; get a second opinion. Find the best neuro / opth-neuor near where you live and go see them. My "diagnosis" came from two eminent MG-specialists both saying they thought I probably had it (independently).
Since then I had two single-fibre EMGs. One was ambiguous. The second (by a more experienced technician) was emphatic.
Good luck with it all...