The breathing problems are of most concern. I had to go on prednisone at first. It's a decision to have somewhat more quality of life and keeping symptoms of MG at bay while dealing with side effects of the medicines that we take.

The fact that your neuro "dismisses" you might be a sign to find another one!

MG is not an easy disease to deal with. You will learn to be your own advocate . We are here for you! Big hug! Barbel

Sorry to hear you are having more problems. Many of us start MG treatment with mestinon and find that it won't work very well after a while. That is because, in MG, the muscle receptors are gradually disappearing. When too many are gone, mestinon will no longer work as there are not enough receptors left. The immune system attack has killed them off. We end up in the hospital on a breathing machine in "crisis."

This sounds terrible, but the good part is if you stop the immune system attack the receptors rapidly grow back. Mestinon doesn't stop the attack, just lets us make better use of the receptors still functioning. Prednisone (and several other treatments) stop the attack and let the receptors regenerate.

Prednisone works for many autoimmune diseases including MG. It is relatively quick to help at high doses (quick as in up to 6 months). If you do have an autoimmune disease and it persists, then you do have to adjust your life to long term treatment and maybe long term limitations. My MG was so miserable, I jumped at taking anything that might help. There is a choice of treatments, but prednisone is often the first one tried.

If you do try prednisone you should keep a few things in mind:
-- Some folks have an initial reaction to prednisone that actually makes them weaker for a time. Many doctors start us at lower doses (10-20 mg per day) for the first week or two. To get a quick improvement from prednisone you have to get up to high doses (60 mg per day for a month got my MG under control). A somewhat standard dose is about 1mg/kg body weight.

--There are many side effects so you should read about them and adjust your life and medications to cope.

--If you take prednisone for more than a week or maybe 12 days, your adrenal glands start shutting down producing cortisol so, after that you cannot just stop taking prednisone, but you must taper it down. The longer you have taken it the greater the tapering time needed--so it is not something you can just get on and get off quickly.

--In the USA, folks with MG, especially if they are having breathing difficulties are often given IVIG infusions or blood "cleanings" which we call PLEX (plasma exchange). Both give a rapid response without the addictive properties of prednisone. However, both are very expensive and generally reserved for folks who are in crisis or other treatments haven't worked. Most of the time these are done in conjunction with some other MG immune suppressing medicine hoping IVIG or PLEX will get the patient through the difficult time until the drug works on its own.

I tested positive for ACHR antibodies so my doctor knew I had MG immediately and thus did the standard MG treatments immediately--Mestinon and prednisone. They worked and got rid of most of my MG problems after about 6 months, then I spent the next 6 months figuring out the lowest prednisone dose that worked (zero for me as I was one of the lucky 15% who go into remission without meds).

After prednisone gets the MG under control, then we spend months and maybe years trying to get to the lowest dose of prednisone that will keep control. Often that means we live with some prednisone side effects and some MG symptoms. That is also the time we are often put on prednisone alternatives (cellcept, azathioprine...). They are very slow to begin to work and somewhat more variable in their effectiveness than prednisone and of course have their own side effects.

With your doctor not sure you have MG, it is a much more difficult decision for both of you to make. Prednisone will mask symptoms of other problems too. One of our members recently died from pancreatic cancer which appears to have caused the MG symptoms.
When our immune system attempts to fight cancer, sometimes it creates the antibodies that bring on MG. That is why everyone with MG is screened for Thymus cancer or abnormalities -- they often appear together and should be screened for other cancers too. LEMS (another MG type) is almost a sure indicator of cancer.

Your doctor may be reluctant to prescribe prednisone as it is not easy to stop it.

Mom took prednisone at about 10mg per day from age 64 until her death at 91 (she had polymyalgia rheumatica--another autoimmune disease) It probably gave her diabetes, cataracts, high blood pressure and likely more problems, but without it she would have had a miserable, painful life, so it is possible to adjust and live a decent life on prednisone.

Long term prednisone even at low doses will add complications to our lives, however, for me it was an obvious choice as without it I couldn't function. With it I had problems, but much less so than MG.

Lycka till

I took up to 90 of mestinon every 4 hours.

It is worse in the night because you had activity.
This is really getting serious....you have to find someone who will listen to you and recognize what is going on.

Have you told your doc of breathing difficulty?

If I was you I wou ld go to er of the best hospital you know of and when you arrive you tell them you are having trouble breathing and you think you have MG.

Be blunt .....tell people you know that there are some people who have MG even though the tests aren't positive. Request treatment for MG.
Time to be direct and blunt and get treatment. Treatment for MG is better than death.

This is getting serious.

You simply need to find another doc.

I have to disagree of trying to 'convince' a doctor to offer you better treatment. You must find a neurologist... Not a general practioncer, not an internist. Call a neurologist tomorrow.

Matt

Thank you all for advice and support!

Barbel - I wish I could find another dr, but its so hard here in Sweden. But I will trying to do it, especially if he doesnt take my breathing problems serious.

Rhanson - thank you for your long reply. I understand Prednisone have two sides. I also understand why the dr is doubtful because my testresult are negative. But on the same time he says that everything pointing at MG. I just feel that my life isnt working. And im afraid of doing too much so the weakness get worses.

Ann- yes its often worse during the evening because I have done things during the day. But often I can feel it already during the day. If i sit too long, or doing things with my arms and so on. But its get better then I rest. Feeling nothing on the morning. I havent told my doctor specific about the breathing problems, but I will do it tomorrow. I have had this feeling on and off during the year. Hoping the Mestinon would fix it, but it dont.

Matt - I already go to an neuromuscular dr. The only one in my area knowing how to treat MG properly. But since I dontt have the "right" testresult, he doesnt seem to really believe me.

Sorry you are still going thru all this..its all a part of this fun disease we have Im afraid...I agree the breathing problems would be what I was concerned about the most..Must be careful with that..I agree with Barb as hard as it may be to find you must find a neuro that is up on these diseases and will at least listen to you and do some important tests....We HAVE to be our own advocate Im afraid cause this has happened to alot of us..I searched for a year to find the right neuro and was soooo lucky to find her...Prednisone is scarey and unfortunately for some of us leaves not so good side affects but as all have said better than the alternatives at this point...Ive been on it for over 6 years slowly tapering down but still have the darn side affects but does help the MG symptoms...I wish you luck and keep us posted...Hugs Jacki

I am so sorry that you are going through this and hope that you find the help you need soon. I agree you need a new doctor asap I am on 120mg of mestinon every 4 hours plus prednisone and Imuran and am doing ok. Learn your body and be your own advocate so learn all you can and ask lots of questions.
Good Luck
Chuck

well if your doc knows how to treat mg properly than why are you still not getting treatment such as prednisone or cellcept.
Sounds to me like you need to give it to your doc straight.
Tell him you belong to a support group where many people have mg with no positive tests result.
Tell him about your breathing difficulties which I hope he takes serious.
If he does not you need to tell him you know of others with MG who have gone to er and gone on ventilator.
You need to request treatment for MG. If you get no positive result send a letter asap to him describing symptoms and requesting treatment.
Please get ahold of MG foundation in your country asap so they can get you in touch with a doc who knows what is going on.
It is my hope that the breathing difficulties is getting you treatment.
New doc is most important right now and our health.

Thank you all!

I spoke with the doc today but he doesnt seem to care about my breathing issues. He said that breathing issues isnt something that usually belongs with MG?! And perhaps it was other things, like psychological!! He said he wont put me on prednisone because of my negative test. At least not at the moment. He said that I can increased the Mestinon to 60 mg and see if that helps me.

I was really down after that discussion. This is not in my head! And its not anxiety! But I do feel very worried about my future. Afraid of ending up in a crisis. I really understand how important its too keep fighting and do everything to try to find another neuro!

Obviously your doctor hasn't spent any time researching MG. The biggest problem we face with severe MG is breathing related and if the doctor not only doesn't know that but hasn't taken the time to do a little basic checking on MG on the internet, you probably want to complain to the health system about his obvious lack of knowledge!!!!

How to find a neuro in Sweden that knows about MG? You look for medical research that is being done in Sweden on Myasthenia Gravis by searching on that something like
myasthenia gravis forskning sverige

Then you contact the researchers directly and ask them to allow you to visit or talk to them. I think bypassing the official medical system is always worth a try to get to someone who is an expert or knows experts.

Now for some personal advice from my own experience -- I am not a doctor or medical person so this is not that kind of advice. Before trying anything you should read about mestinon dosages and what happens if you take too much.

To see if mestinon is helping you can try skipping a dose or two and see if you get weaker or not. You can also try bumping it up just a little to see if it helps.

I was prescribed up to 90mg every 4-5 hours, and actually ended up taking about 60 every 3 hours when at my worst. The 90 was too much at once, but 60 every 4-5 hours left me weak spells.

Most medical references list 600 mg / 24 hours as an average dose and indicate that up to 1500 mg /24 hours may be needed in certain cases ( http://www.drugs.com/dosage/mestinon.html). Too much mestinon can also make you weak and be dangerous.

The only time I was in the hospital was a breathing crisis when I was taking 60 mg / 5 hours early in my MG. After I got there they did the 90/4 hours which let me go home after 2 days and then I changed it to 60/3 hours with the doctor's OK and a time-release overnight.

lycka till
God Jul

Your doctor is not a neuromuscular specialist if he does not know that breathing crisis is the main threat with mg.
Unfortunately, a lot of people with myasthenias have to go to several doctors before finding one that has real knowledge of their disease.
Don't give up, keep trying to find one that knows more.
You may end up having to go to the ER if your breathing gets any worse, but maybe they can help you.

I care about you.
It is hard to take actions sometimes when you doc is behaving as he is.
Action plan is needed.
1. Go to an Er and tell them you believe you have mg and you are having breathing trouble.
2. Find mg foundation in your area to recommend a path of treatment.
3 make sure people know that you know some people with mg don't have positive tests.
Action is necessary.
Change is necessary
Ann

Just to throw my 2 cents into the pot. I had very bad breathing problems and because in past, I've had chronic bronchitis, I was put on antibiotics and prednisone. Breathing kept getting worse. Go and pulmonologist kept switching antibiotics and upping prednisone. Kept getting worse. Ended up in ER. They did every known lung test on me known to them. Everything came back negative. Doc came in and asked if I ever had gerd. I said yes. He ordered pepcid iv and breathing opened up in 10minutes. Point being just cause you have mg doesn't mean every breathing problem is necessarily caused by the mg. Even with mg, you could also have a lung or acid reflux problem that didn't have any obvious symptom except shortness of breath. I'd say see a pulmonologist to investigate as there are so many possible causes of shortness of breath. Weak esophagal and stomach muscles from mg can cause acid reflux which can cause breathing problems and solution can be as simple as pepcid or omeprazole. Very risky to diagnose yourself or base your breathing causes on someone else experience. Wish you the best. I know how scary shortness of breath can be.

flawdnotclawd / Excellent point.

Mestinon can be effective with muscular weakness in a matter of minutes and last for a few hours. However, it can be helpful with ptsosis and/or diplopia but it could takes weeks.

Predinsone is a slow steady drug that takes several weeks to be of benefit to some patients.

Moortje81 / Understand we want you to get better and love you. Most of us are in the US and do not understand your health care system. So we may be ignorant w/ some of our replies.

First, do whatever you can to find another doc. **My first visit to a neurologist was a wreck. He has experience with MG, Graves, and other autoimmune diseases and I was referred by my neurosurgeon to this 1st doc. At the time of the visit, I was suffering from weeks of severe diplopia, ptosis, and facial droop...He ordered a couple of blood tests and said, "I'll see you in a few weeks". He did NOT give me a prescription. He did not even attempt to start some treatment.

My current neuro is in a very small town and caters to my needs. I even have his cellular number to text him at any time. It pays to find a doctor that cares.

Dealmaker

Is there anything we could possibly do to help?
Thinking about you. We all know how difficult this can be.
Ann