Hi piamaria. I am also antibody negative MG which is why it took so long (25+ years!) for me to be diagnosed. It was thought that I had the severe form of chronic fatigue syndrome or maybe MS. After giving up on a diagnosis for years and just treating everything symptomatically as well as we could, two years ago, my PCP finally sent me to a general neurologist who has a reputation for liking diagnostic challenges. Although I am antibody negative and my EMG was normal, the neurologist decided to write me a prescription for Mestinon to see if anything happened. Bingo! My swallowing improved, double vision and vertigo improved, and even neck pain that I had attributed to posture improved. A CT scan which she ordered showed a thymic mass, and my thymus was removed last May. The mass was benign.

My neurologist referred me to a neurologist who specializes in MG. I am lucky to live in a city that has such a specialist! About a month ago, my MG specialist did a single fiber EMG on me which was so positive that the testing was ended early. I was given a prescription for generic CellCept that day and have been taking 2000mg CellCept as well as 360mgs of Mestinon per day.

I am fairly new to MG but am an old hand at living happily with debilitating chronic illness. I did notice a big positive difference in how the medical community treats me now that the single fiber EMG came back confirming the MG diagnosis.

I think chaos posted that she is also antibody negative.

A good neurologist makes all the difference. Mine isn't a specialist in rare cases, but she is understanding and doesn't discount what I say because tests say something different. I'm also on Cellcept. I find I have to take each day as it comes. Thanks for the reply!

Hello Piamaria-

I too am seronegative diagnosed a year ago but had symptoms for about 2 years prior. I mainly had vision/ptosis but now generalized. I’ve had a very rough month and currently am on medical leave from work. Despite IVIG every 2 weeks, pred 60mg and cellcept i’m Struggling to do basic things.
I’m in the army and live a very active life with 3 small boys. This has really shook my foundation of late and i’m Hoping to hear from others as to what may have worked for them. We are considering Rituximab if the steroids don’t kick in. I also am trying to eliminate dairy and gluten as some seem to feel that has helped.

I’m happy to have found this group and learn a bit!

I've been kin various amounts of steroids over the years. It seems my body gets accustomed to them and they have to be increased. Unfortunately, 60 mg a day seems to be good. My doctor is weaning me off and increasing cellcept. I'm waiting for approval from insurance to try Ivig. Every doctor prior to the one I have now has said it probably wouldn't work, I just want the chance to try it.
When I was first diagnosed my kids were 6 and 2. It was really hard. I can't imagine how hard 3 would be. I wish I had some words of wisdom. I just try to take each day or hour as it comes. I think we all have to decide what is important to us and let that be what we try to do. And cleaning house is not it for me! My kids remember it as a treat to get in bed with me and watch a movie. It was a treat for me!
I will say my children are better adults because of MG. They are more independent and compassionate.
I try to remember God has this, I can't worry about the future. I just do whatever I can to help me to be stronger and feel good.
I hope that you get on some meds that help! Keep me posted.

Thank you piamaria. It is true, you have to be grateful for each day and savor each moment as they come. It’s just been such a transition to feel so fragile! I never saw myself that way and am the sole provider for my family. I am determined to get out and run again (even at a snails pace!) and keep trucking. Have had 4 days without a major breathing event so, hey, things may be turning around!

Be well and will keep you posted.

Num, it sounds like you heading into a good phase! I refuse to think of myself as weak. I hate not being able to do everything I've always done, but let's face it, no weak person could survive this!

I was treated for two years for post concussion syndrome (over 20 total) but something wasn't right so my PCP sent me to a Neuro doc who diagnosed Myasthenia Gravis in 2010. My testing showed no antibodies but I was lucky enough to have all the symptoms. I was sent big cities and took tests only one of which showed a small possibility of MG but no antibodies. one Dr. told me to go off my meds so I did and got all my symptoms back. my neuro Dr said that was all the proof he needed and said the MG diagnosis was obvious. During the past eight years I have tried the basic meds and IVIG,s I found that mestinon and prednisone were good for me but I am allergic to azathioprine and after many bad results I am back to mestinon, prednisone and Cellcept. We are all different and our disease and reactions to meds is different. I am 76 years young, I have PTSD, back problems w/pain, and many other issues connected to MG, head & or back issues or just plain old age. I have a good PCP and a good neuro Dr. and many other good specialists that have worked with me and a wife that is an angel in supporting me. I am finishing building our house and keep up our 42 acre property but all slower than I believe I should be doing it. I find I am just telling you my story with MG and not answering your questions specifically. This is my first time on line, I thought I would try to help but maybe I am not. In conclusion I will just generalize by saying that MG requires a lot of experimenting and testing of ourselves but we must not give up. Due to some things being unique in my situation in about 30 years I would like to donate my body to science (Myasthenia Gravis) but don't know how to go about it, if anybody has any ideas on this subject I would like to hear, thank you. Carl

I would so donate my body as well! Thanks for the info. I think everyone travels a different road.

Piamaria,
I'm also sero-negative, diagnosed last May because my doctor sent me to a new-to-the system Neuro so I'd get seen faster, in spite of the testing, because I'd been using ice on my eyes and napping asst lunch break to to get thru my workday. I only considered Myasthenia when it affected work; lately I'd been trying to figure out why I felt awful at the same time every day, and it wasn't near as bad after a lunch nap. I was also trying to decide if it was a synthroid side effect, which is where I saw "myasthenia" as a potential side effect. Since I have no thyroid and had persuaded the doctor to keep me on T3 also I experimented with that. I remembered MG from nursing school so I didn't look that up right away - I took some time ruling out the more obvious things and when I tried the ice while working I was both happy and mad cause I knew it might be a misery to get diagnosed. When she diagnosed me she told me I'd probably had it 10 years, validated all my initial subtle symptoms, which was of course good and a drag too since I have a lot of fatigue and have had some episodes where getting really upset resulted in very strange symptoms I couldn't account for-profit requiring sleep to feel better. Apparently all the weirdness she felt has been the MG. I was positive tio muscle testing, and I responded pretty well to Mestinon.. The doctor added the long acting but it seemed to have a very erratic effect on me. I had to wean off it slowly and go back to just Mestinon. ,60mg, 5x/day. I have prednisone on hand.
I have intermittent swallow issues, tonight was the worst so far and included speech issues - extra fun!. I suspect it was triggered by being frustrated with my husband and adult daughter's lack of help around the house. She and I work full time, hubby retired for neck pain, early. I texted them both saying I wanted changes and alto I didn't feel all that upset, I was aware I was also bottling a faire amount, so that was likely a factor. If I tell my husband about symptoms, he simply counters with his. I can't tell if he's being colossally self centered or its to tell himself that it's not actually a big deal shui he doesn't need to worry. I get nervous about what's next. Tonight I brought an extra Mestinon to bed, just in case!

I'm considering how to get weight training and cardio to build stamina and strength. I do isometric exercises when working, like holding my legs up while documenting calls or talking on the phone, or toe-raises or just holding a semi-squat "horse" position as long as possible. I agree that more muscle strength would be preferable. I have shows I like and have a treadat does have some good "hill" angles and slow speeds!. We'll see how it goes.
I understand wanting to donate your body for birth of you who mentioned that. Talk to your doctor about an Advance Directive and how to include that in there.
Take care,
Prayers......
Laurie

Laurie,
I'm so sorry that you don't have your husband and daughter's complete support. It took my husband longer than I thought it should to understand the disease. And there are still times that he doesn't understand the way the tired feels. It's not a normal tired. I know you know what I mean. Hopefully, they will begin to get it. I had my husband go into the exam room on doctor's visit. But honestly, if you don't have it, I don't think you can understand it. I can't explain it well enough.
But as time goes on, they will begin to understand. That will help so much.
Thanks for your response.
Prayers and luck,
Maria

I like your post. Reminds me of myself. I was diagnosed three years ago and I will be 73 next month. I did lose some muscle tone as I am a very active outdoors person. I ride and shoe horses everyday. well, not so much anymore with the riding, but I still shoe the 20 head of horses I own as need be. I have a sister who is a nurse and she taught me that if I put my chin into my chest while I am drinking I will be able to swallow easier - it works! My wife is a big support and always give me reminders not to spend too much time in the sun and rest more often. She is my rock. I don't have double vision too much and I don't use my reading glasses as much as I use to. However, my eye muscles twitch a lot. The pyridostigmine seems to work,, 60, 90 & 60 mg per day. John

A supportive spouse means so much! Knowing that my husband is always there, warms my heart. Congrats on being able to shoe your horses. Living in central Kentucky, I know what that entails. I worked in the horse industry for over 15 years.
Thanks for the tip on swallowing. Best to you.

Piamaria, when I read nnyguy's comment on the receptor generating and remission thread, I thought of you and your question about regaining muscle mass. After reading his post, I think I will focus on some strength training, especially in my arms, after the CellCept and thymectomy have a chance to do their magic and my health is stable. I think the key is to be patient and not overdo it until "after the receptors regenerate." I assume that having had untreated MG for so many years, not all my receptors will regenerate.

Have you made any progress with regaining your strength?
-Nan

Here's nnyguy's comment:

nnyguy1960 04/14/2018
It is correct that receptors do regenerate; some faster than others. But, also realize that we are talking muscle nerve receptors. When your muscles are comprimised as a result of MG, your muscles become weaker from lack of use. It is important that we exercise the muscles attacked by MG to get our strength back after the receptors regenerate.

I learned this after a long delayed hip surgery. My muscles hadn't been used properly for years, so after my hip replacement I wasn't magically fixed. I needed to go through a lot of physical therapy to strengthen these muscles.

Nanosecond, I'm waiting for IVIG to do it's magic. I try to push myself just a little on the days, or times of day I feel good. Just walking more or using my arms more. I agree, we have to be patient and I'm not good at that. And if MG can't teach you patience I don't know what will. Good luck and keep me posted!