Hi, It WILL get better! The hardest thing I've experienced, is how long it could take. I was diagnosed almost a year and a half ago (after looking and feeling like I had a stroke) for four months. I've been on 60mg of prednisone for over a year, and now tapering, Imuran since October, Mestinon 4-5 x per day and Mestinon Timespan at night; Had a thymectomy last June, Pheresis 3x per week for over a year, and now I get IVIG every 2-6 weeks. I am so much better overall than I was last year at this time -- I couldn't chew, talk, hold my head up at all, etc.,,,,,

My neuro kept telling me to be patient - it made me so mad! But I see now, the difference. As hard as it it so try not to think about the illness and the effect those crummy symptoms have on your life, (as I did) "try not to think about it". It will get better! It is so slow though, I didn't even notice -- my friends and family would notice things, like my voice was stronger for a longer period of time, or I held my head up for a game of cards, or little things like that. Hang in there -- you're not alone. :)

Does mestinon help your symptoms? If so, you could try 90 mg at a time. Did you have IVIg when you were in the hospital? It sounds like you need something like that to give you some greater recovery from your crisis.

When I started on the high dose of prednisone (60 mg) I felt much worse. I was soooo sick and my symptoms were much worse, but the Imuran has started working and I'm in pharmacological remission in just 6 months. I'm now down to 7.5 mg of prednisone and feeling better and in two months I will be off of it altogether. I'm wondering why you aren't on any other treatment? Immunosuppressants, plasmapherisis, or IVIG?

Thanks for your replies. . .

Mestinon does seem to help my symptoms but it's very up and down and I hear that can be because of the course of MG but I had a very strong response to mestinon in the hospital several times. And I am able to walk even though I am weak. When I am bad off, I cannot even walk. 90mg made me twitch viiolently all over and have diarrhea and they reduced it but maybe I could try 75mg?

No one really understands when you don't even have a diagnosis. There are like, "Are you just on the couch again? You have to walk around and do exercise, you'll atrophy!" But everything just gets worse. Last night, I was winded for over 5 minutes just to brush my teeth and get changed for bed.

No one has had the courage to diagnose and treat me yet so that is why I haven't gotten the heavier hitting therapy that I think I need. This is really hard. They want the diagnosis. I had a positive ice pack test, the longest list of symptoms that you can have and a strong response to mestinon but everything else so far is negative (including LEMS antibody test).

How do you get the treatment you need????

Hi Art Chick
I feel your frustrations. I am also seronegative but now my doc is leaning towards hypokalemic periodic paralysis. ALthough my potassium doesn't come up low most of the time, it does drop.

Mestinon does help me somewhat, sometimes and that is the only treatment I am getting. I am really starting to push my doctor around now!

For now, I control my weakness to some degree with living on carrot juice, mestinon, aspirin, black tea with a whole lemon - my concoction!

Are you seeing a neurologist? They seem to know the most about this disease. I tested positive for the antibodies so don't know much about the seronegative diagnosis. Mayo clinic is supposed to be the experts on MG and I've gotten useful info on their web site.
I've been on Mestinon since I was diagnosed in Sept. 2009 and started Prednisone in Jan. But its been IVIG that has helped me the most. I had double vision for almost a year and that has been gone now for nearly 3 months. I've been getting the IVIG monthly since Jan and went about a month with very few symptoms but then had to have a thyroidectomy on 6/3. So right now I am dealing with the shortness of breath, droopy eyes and overall fatigue. But I am due for IVIG this week and will hopefully be back on track.
I do understand what its like when no one seems to believe you. I catch myself saying I'm just being lazy sometimes. but when the muscles are tired they just aren't going to work like you want them to. Its definitely a process to find the right treatment and I don't think it is the same for any two of us. It can be very frustrating at times but I am hopeful that it gets better.

As far as the Mestinon, when I take 90, I get muscle twitches and spasms that are out of control -- so I'll take 60 every four hours, and if I'm weak inbetween, I'll take 30 and that keeps the side effects down, and helps the weakness.

Hey Art Chick,

i am seronegative and was unable to walk for the better part of November/December/January. I was hospitalized twice, once after "suspected diagnosis of MG" and once after "confirmed diagnosis of seronegative mg" by one of the leading neurologists that treats MG patients. I can tell you that once my treatment got into full swing I started doing much better. The mestinon helped my strength for a period but the amount of time I was unmedicated waiting for a diagnosis and getting weaker led to atrophy so I saw a physical therapist and that too helped. We went very slow so as not to cause futher attack to my leg muscle receptors.

Currently I am on 60mg of Mestinon every 4 hours with 30mg 2 hours after I take the 60 if I am still symptomatic, low dose prednisone, Imuran, and IVIg every 2 weeks. It has helped a ton and there is hope but Amy is right it takes a LONG time. The most important thing for you to do is find a neuro you are comfortable with and trust so you can get the disease management you deserve to get better.

Hugs,
Jen

I am also sero-negative and have had many of these symptoms. The things that worked for me was a high protein diet, taking mestinon timespan so you don't have the up and down before taking doses. ask your doctor for a bi-pap machine, my neuro ordered it for me and it's great it allows your lungs to rest and when I use it afterwards i don't get awinded. avoid hot liquids or foods as it will relax your throat muscles, drink ice cold beverages and stay in ac and that should improve things for you. I have had this for over 20 years, currently i go to plasmaphersis every week and take mestinion timespan
Hope you feel better

Hi Artchick

I am so sorry you ae also going through this! The worst time is when you are still trying to get someone to admit to a diagnosis! I am also sero-negative but I had a strongly positive Tensilon test and positive EMG's. Despite this I was not diagnosed and like you just put onto mestinon and prednisone which initially made me way weaker. After my third time on a ventilator and almost completely paralysed I went onto the net and found myself an expert neurologist who eventually made the diagnosis. I am now on heavy immune suppression, BIPAP ventilation and regular plasma exchanges. My disease has been very difficult to manage and I've had many crises. My neurologist says it's because I went undiagnosed and my disease was left to run wild for 7 years. This caused permanent muscle damage. I am only now starting to see some improvement. My advice to you would be to find yourself an expert neurologist without delay and get yourself the treatment that you deserve. Chinup girl you are not alone and you will get there! Drop me a message if you need to chat or any advice.
Ange

Thanks for all your help everyone. Sorry to get back to you so late but I have been in the hospital for the past 6 days!! So So Scary!! Serious breathing problems, rapid shortness of breath and my MEP or MIP was down to 12. They were freaking out. I choked 15-20 times in one meal before I went in and started being unable to walk unassisted again. Thankfully the same neurologist that I had in the hospital last time was on and had the courage to treat me. % days of IVIG and 60 mg of prednisone/day and I am SO MUCH BETTER!!!!! Of course I am still unconfirmed but he said he cannot imagine what else it is but I am still needing to go to more specialists to get the firm diagnostics if for no other reason than he said that it cost $10,000 for this 5 day treatment and without full proof the ins. co may deny after a while so. . .

I really hope this holds me for a while. I feel like a new person : )

I see an MG specialist on Thursday!!

So sorry you have been so ill! It's very scary isn't it! I'm delighted that you at least got the IVIG and are doing so much better though!Goodluck with the MG specialist on Thursday! Let us know how it goes. Hugs! Ange

I saw the MG specialist yesterday and it was absolutely fabulous--WAY better than I could have ever hoped. He was tested so many more muscles groups (fingers, legs, arms, back, stomach, neck, eyes, etc) than any other doctor and in different ways too. He was genuine and thorough. Even though I felt very strong compared to how I have been, there were muscles that were very weak he was saying and the testing caused me to be short of breath at times.

He said that there were specific tests that an MG specialist looks at that other doctors may be unaware of, certain muscle groups. He said it is "very very likely that you have myasthenia gravis." When I asked what else it could possibly be, he said "That's just the thing. It couldn't BE anything else." He went onto say it's only that there is no objective test yet because of the seronegative issue. He has several people in my situation. I just have the positvie icepack test, strong response to mestinon, most giant list of symptoms possible, and huge positive response to IVIG.

He is going to do a CT of my chest because he said the CTA chest is insuffient since they weren't visualizing the proper area. He is ordering breathing test sitting and lying down to check the diaphragm. I have an SFEMG scheduled for next Wed. He wants to do 5 more days of IVIG starting a week from Monday because I am too weak compared to normal and because he wants to get me off prednisone to get me in shape for a thymectomy!!!!!!!!!

And he said he would be my new doctor!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So I as diagnosed as I can be--finally. Boo and yay? And the SFEMG is really just for the insurance people. . .

Wow! That's great news! You found a doctor who is on the ball and knows what he wants to do. What part of the country do you live in? The South maybe?? This doc sounds like a real keeper. And you have quite the schedule coming up. I hope it all moves along smoothly for you and you get tons better!

Hi art chick,

I'm fairly new to DS and just reviewed your post. Wow! You've been through a lot and I hope your doing better. From your original post, it seems that my symptoms are extremely similar to yours, except that my breathing isn't quite as bad--yet. I'm a bit worried because twice today my breathing became very shallow. It took a lot of concentration & rest before it went back to normal. It seems like my breathing problems are getting slightly worse. I was so happy to hear that you've found an MG specialist, have a diagnosis, and are getting treatment. This gives me hope! I'm seronegative and my standard EMG was normal. No other tests have been done yet. I'm hoping to get into a research center and see an MG specialist soon.

Thanks for sharing your story. It's nice to know that things do get better for some people. Hopefully for me and many others as well. And the sooner the better. LOL!

Best wishes,
Lindie