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Just diagnosed with MG
Hi everyone!
I am 35 years old male, just diagnosed with MG. i have been having eyelid drooping for 2 months. And that is pretty much the only symptom i have right now. So worry and scare now as i know that other symptoms are on their way. I have been dealing with eye problems since 2006. It all started in 2006 when i had double vision for a month. I did not even go to see doctor. The double vision and and eye drooping are off and on for the last 10 years without seeing the doctor until recently. The reason i went to see the doctor was because this time the eye drooping last longer than the previous times. As a result, i end up having MG. I do not even know if i just have MG recently or i have been with it for the last 10 years. Initially, can the eye symptoms such as double vision or eyelid drooping go away on its own without treatment. My eye symptoms for the last 10 years are off and on on their own. Do not know what to expect right now. Anyway, i just want to share my story. I wish everyone the best! |
Welcome aboard, this forum has very good advice and moral support it has helped me a lot...
I've been diagnosed back in 2008 I had a lot twitching in both eyes and left was drooping quite a bit but never had double vision after a while it went dormant and seemed to be under control, kept seeing my Neuro every 6 months and everything seemed fine, I refused to take any meds... In Feb 2015 I thought I had a bad cold so I went to see my GP and as usual they prescribe you antibiotics, he knew I had Myasthenia and I wasn't aware to be very careful about prescribing certain antibiotics and ended up taking one that I wasn't suppose to and started me in a crisis!!! but as time went by I never suspected I was in a CRISIS...as time kept on going by I was getting worse so he kept giving other types of antibiotics... It got so bad I couldn't speak anymore nor eat or swallow, had a hard time holding up my head and very soar neck and started having a hard time breathing!!! In mid April it got so bad I could barely breath, eat or swallow all I was eating is jello I couldn't drink water without choking I started losing weight...my breathing got so bad that is when I decided to admit myself to ER, my wife had to drive me in...I couldn't speak anymore and barely breath she had to do all the talking for me nor could I stand up she had to wheelchair me in...I stayed in the hospital for 8weeks and was off work for 10 months, I'm back to work now part time, I'm getting better weekly. I'm not trying to scare you but don't do the same error I did...don't take this lightly and tell yourself it'll be OK! Get yourself a good Neuro and listen to him or her, get a list of MEDS to avoid taking and make sure your GP is up to par with your condition and take it day by day... I'm now stable and have gained back my weight, strenght and eating is better than before being ill...I'm still medicated and doing a plasma exchange weekly. I must say that I'm feeling as good as before, I still have some facial numbness and speach slur when I get tired or push myself a little to much, you have to reprogram yourself and change your habits and life style...in other words CHILL, LOTS of rest will make you feel a lot better. Don't worry and listen to your body you'll be fine, I wish you all the best, don't let my story scare you theres no 2 cases the same, just don't do what I did and tell yourself I'll be OK and wait to the point that your over your head deep in a crisis, now that I got to know my body I listen to it!!! I wish all the best:wink: |
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you were diagnosed in 2008, and 7 years laters you have genralized symptoms? All this time i thought if one can get through 5 years without generalized symptoms, then it is unlikely to generalize. Now i am scare! I have thinning bone. I probably cannot handle prednisone. |
No one has the same symptoms, Doctors think what triggered my case into a generalized Myasthenia is the antibiotics I took that threw my immune system out of whack...
I was on the same page as you as far as being diagnosed as Ocular after all this time had gone by that's why just be careful as for what meds you take and don't overdue things, I was working 60 plus hours a week and living the life for over 25 years and I guess it caught up with me. |
Some stories you read here will scare the you know what out of you, don't read all of them. Not all MG is the same and you are very likely to have a mild form of the disease.
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ttmmkk001
I was not diagnosed until 2012, but from around 2010 until then, I knew something was not right. My symptoms started with chewing problems, then speech problems, (If I talked very long at one time). I was finally diagnosed in 2012 because I went to the eye doctor, and he said "I think you have MG". He sent to a neuro who did the blood test and confirmed it.
The mestinon took all my symptoms away, and I thought that mine must be mild. However, 3 years later that changed very rudely, and I had 2 crises spells in 3 months. So, be careful, take you medicine, and listen to these people on this thread. They know what they are talking about. Best of luck -let us know. FREDH |
Welcome to the forum!
MG can be mild for someone for a few years, and then be worse, and then be better! The one thing that neurologists say about MG is that the only thing predictable about it is its unpredictability! I wouldn't call anyone's bad experience a "horror story." Becoming worse is just a reality that some people with MG have. It's important to know that, so that a person can avoid pushing their body too far. It's not about being scared. There's no point in that! It's about knowing as much as you can about MG and being prepared for anything—good or bad or somewhere in between! Have you checked with an endocrinologist as to why you have thinning bones? It could be some underlying parathyroid issue. No, Pred would not be a good choice for you! But there are other treatments, which your neuro should go over with you. You are in charge of your health, along with your doctor. You have to trust your instincts when deciding on any treatment plan. So many things can make MG worse: infections, stress, hot/cold weather, lack of sleep, certain drugs (see Home for a list), doing too much of anything in a sustained or repetitive way, and many other things such as surgery. Get to know what there is about MG so that you can stay as mild as you can! Drugs are helpful. But MG is ultimately managed with common sense and rest. Even those on drugs can become worse. It's such a guessing game! Don't let that alarm you though! A person gets used to their "normal" after having MG for a while. I won't sugarcoat it, however. MG can put people into a MG crisis, where they can't either swallow well, move well, or breathe well (or all of the above). That's the time to dial 911. One can't predict how severe a crisis will become, or how quickly. Not everyone who goes into the woods encounters a bear, but I sure would like to know what I'd need to do if I did!!! It's the same with MG. This info isn't meant to scare anyone, but to prepare them for what might happen. Even if you don't have breathing issues right now, you might want to see a pulmonologist for baseline breathing tests. Then they will have something to compare to if your breathing were to become worse. Set your MG up for success! If you get overheated, cool down and rest right away. If you have a cold or lung infection, watch for increasing difficulty breathing (and don't take a contraindicated antibiotic!). My life isn't the same as it was, but I have a good life. No, I can't work. But I can't take drugs other than Mestinon. Some people work and are just fine. It's hard to say what course your MG will take. Take some time to get to know MG. The people here are great! They can offer info and support. And it helps to read examples of what others have been through. Anything else you need help with? Annie |
Thank you very much for every single comment here. My family is depending heavily on my income now. I can not imagine what will happen if i can't work. It really sucks. But it is life, and there is no "if" in life. I just have to live with it like all of you do here. I hope that my MG will not generalize too soon, so i still have some more time.
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Vitamin D level...
Hi ttmmkk001, and welcome to the community. You will find many knowledgeable, and caring people here. I suggest that you have your Vit. D level checked. Many with autoimmune diseases have been found to have low levels of Vit D in their system. There is evidence that keeping Vit. D level in 40-60 ng/ml range is good for the general population. It appears as though those with AI disease should maintain AT LEAST this level. Currently, my level is at 67.7 ng/ml. Assuming no problems with calcemia, or calciuria, I intend to bring this up to about 90 ng/ml. This in the hope that Vit. D at this level in my system will stave off any worsening of my condition and keep it at its typically indolent state. Due diligence: Please study/research all you can about MG, including such info as is contained in this very post! Knowledge will demystify MG for you and will better enable you to make decisions regarding your treatment. ....MG appears to be particularly perplexing to doctors. As you read more here you will see that. Without a very good understanding of MG, we may not realize when we are not getting proper treatment. This is very important. Become an expert in MG!! Best Wishes, patrick123
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My vitamin D level is indeed really low. I think it was about 9 or something. Does it have any thing to do with MG. Can a person with MG take D3 supplement everyday? |
Hi Patrick,
Yes you can take D3 no problems, I'm taking a massive amount weekly 40.000 ui get them prescribed by your Doctor they're not expensive and you can get them in 5000,10000 and 500000 ui I take 10000 every second day and it has helped me a lot since I live in a northern part of the country I don't get much sun exposure and since I've been diagnosed with Myasthenia I don't tolerate the sun and heat very well... |
Dear ttmmkk001....Your Vit. D level is seriously low...
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ttmmkk001, Vitamin D3 supplements are very important, especially when your D level is so low. I personally take 10 - 15k of it daily.
In your case, you should see an endocrinologist to assess the bone issue and D at once. I would also recommend that you have your vitamin B12 tested, since that's a common deficiency as well. Research endocrinologists and find a good one. Some of us with MG also have thyroid issues. If MG becomes worse, you can always go on Social Security Disability Insurance. It can take up to two or so years to be approved, so consider that going forward. It's not as much as you would get while working, but it's better than nothing. I hope you will give yourself some time for this all to sink in. It's hard to adjust to the idea that you're sick! And any family or friends need to adjust as well. You do not have to inform an employer about your illness, however! How or when or if you do that is up to you. Annie |
for the last 5 days, i've been having tightness jaw, breathing difficulty, and stiff neck. I guess these are the generalized MG symptoms. My question is how long does it take for the symptom to get to the stage that i am unable to work?
Will the treatment prevent them from getting worse? Thanks all |
No one can predict what the course of MG will be for each person. I'm sorry, but there is no way to tell if you will be able to work in the future or not! Try not to worry about that, okay? Stress makes MG worse.
If you are having real trouble breathing, you should call your neurologist AND go to the ER (dial 911). The risk for a MG crisis is high when someone is newly diagnosed. They either don't know how to manage the disease or don't have the right treatments yet. PLEASE call your neurologist right away!!! You can deal with the other questions later! But, yes, there are treatments that can make you better. I hope you'll be okay. Annie |
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I have app with my neurologist on september 15. I only have breathing problem when i lay down. I have one more question. Have u ever have dental care during your MG years? I have a big tooth's infection right now. My dentist suggested to have it extracted. If i do the extraction, it will make my MG worse. If i leave it there, the infection would make it worse also. Do not know which direction should i take. Annie, can i find u on facebook? |
I don't know what to say about the dental care. They might try to put it off by doing an antibiotic first. There are antibiotics that can make MG worse, so go to Home to check into that.
You don't want a dental infection becoming worse, either. How have you done with Novacaine or other "caines" in the past? I personally do better on Xylocaine. But any of the numbing agents can make MG worse. No, I'm not on Facebook. I don't do the social media stuff. Sorry. I can't tell you what to do. Only you and your doctors can. I still suggest you call a neuro and discuss this, or at least with a nurse from a neuro's office. You don't want to do anything right now that would send you into a MG crisis! I've had a tooth out. It's pretty quick and easy. If you can handle pain, they could always use a smaller dose of the numbing agent. And then take Acetaminophen for the pain. I hope that helps. Annie |
ttmmkk001
Please don't wait to long if you have breathing problems, I'm talking from experience I started like you did having breathing problems over a 3 month +/- to the point that I couldn't talk...then it kept on creeping up that any type of movement or exertion would put me in a breathing frenzy I'd start chocking and throwing up!!! My GP thought I had cardio problems, I had irregular heart beat and palpitations...when I was admited to ICU my red blood cell count got as high as 195! Doctor's couldn't believe it all this caused by my breathing problems lack of oxygen, I couldn't talk without chocking it was an awful and scary feeling so please don't fool around and get help immediately...breathing has to be the worse symthoms for MG patients, get help right away believe me it'll make things a lot easier for you to get back on track, I waited to long as Annie mentioned I didn't know what were the signs of a beginning of a crisis now I know... This is why please take our advise. |
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Let a doctor tell you how you are doing, instead of guessing! ;)
Poor breathing in MG can feel as though you can't take a deep breath in or a deep breath out or both. Chest wall muscles can become so weak that they spasm or cramp up. O2 saturation can tank late in the game. Even in the low 90s, it can mean that MG is about to tank. The deceptive part about MG is that a person can become weak so slowly that they don't even realize how weak muscles have become. You can do a check of your muscles. How long can you hold out your arms for? How long can you hold your breath? How long can you sit up straight? How long can you stand for? Can you grip an object well? There are many ways to check to see how MG is doing. But the best way when your instincts KNOW that you are worse, is to see a doctor in the ER!!! Don't wait. This is one unpredictable disease and you don't want to mess with it! I hope you'll be ok. Annie |
It's a feeling I hope I never have to experience in my lifetime again, it was like someone was pinching my nose and had his hand over my mouth and you gasp for air...some other times I felt like I ran a marathon and just couldn't catch my breath, at work just sitting at my desk I'd get those deep breath gaspings like when you have a deep cry...I couldn't drink without CHOCKING! and then gasping for air.
Then soon after I started having severe swallowing difficulty it would take me 1/2 hour to eat a hamburger and kept worsening afterwards, It got to a point that I couldn't drink nor eat solids, jello and yogurt and thickened liquids became my diet for about a month and I soon started losing weight and just kept getting weaker This didn't happen overnight, that's when I started seeing my GP and thought I had Cardio problems, I also had heart palpitations and upset stomach a lot. Please don't wait till it gets to this point, now that I know what a CRISIS is ACT IMMEDIATELY and consult with your neuro. Don't be scared, I was but now feel better I ever had, breathing, eating, swallowing all have improved from before hand it just creeps up on you so slowly you don't notice it until it's to late, my vision has improved too my Optometrist asked me what I had done, she was amazed on how it had improved after being under medication. Good Luck and don't be afraid about getting help, just don't let go we're all with you! Once you're under medication it'll be for you to adjust to your new lifestyle and capabilities I have and don't regret it, I feel much better, I'm back to work 5 days a week 30 ish hours, back to walking and biking and a bunch of other things. I'm still improving as time goes by... |
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I just check my heart beat rate. And it is 109. Wonder if MG's breathing problem make the heart rate faster?
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When the body cannot get enough oxygen, the heart works harder to make that happen. Therefore, the heart rate goes up. When the heart cannot accomplish that anymore, the O2 plummets. And a MG patient gets far worse.
You need to take this seriously. No one likes to go to an ER, but you need to. If you are rapidly becoming worse, it is the ONLY place you should be. Please. Don't become a statistic. :hug: Annie |
I just saw my nero for the first time. She ordered a CT scan and Pulmonary test. She said that i can go to the dentist for extraction and exercise. Would i listen to her or have a second opition. She only answered when i asked the question about MG. A little disappointed. She started me on mestinon 60mg 3 time a day, every 8 hours! Wouldn't it supposed to be every 4 hours?
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They often start slowly for a reason (well, a couple of reasons). They don't want anyone to overdose in case they got the diagnosis wrong AND they want to see if a patient has any side effects or adverse reactions to Mestinin before they adjust the dose amount or the time between doses.
So that's what a good neuro would do! Of course, it would have helped if she had discussed how you might adjust the spacing in a week or two. Mestinon wears off in 3 hours. It kicks in after about 30 minutes of taking it, lasts for two hours after that, and then wears off in the last 30 minutes of that 3 hour period of time. That does not mean that you should take it that often or even take it every 2 hours!!!! Don't play with it yet. That's how people end up in a cholinergic crisis (too much Mestinon/acetylcholine). A myasthenic crisis is when there isn't enough acetylcholine getting to the muscles. I'd put off the exercise! What kind do you do? This is the point where some doctors do not understand MG. Yes, it's great to be able to keep muscles as strong as possible. But the more we do, the worse we get (relatively). I hope they do the MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests. Those are specific to neuromuscular diseases. They show how well we are doing at breathing air in and out. Be cautious at the dentist. Make sure you sleep well a couple of days before and a couple of days afterward. Stay well hydrated. That will help clear any drugs from your body. Since they put the drugs into the mouth, try not to talk too much over that period of time to reduce the strain on those muscles. Sometimes, the "caines" (i.e., Novacaine) can affect breathing as well. Keep asking questions! There is a lot to know about MG. :hug: Annie |
Annie can correct me if I'm wrong, but when you go to your dentist, be sure to tell them that you are taking Mestinon and you are being treated for MG. A good dentist should take that into account and be able to make treatment decisions that will help you get through the appointment better, and also pick medications that will work better for you during the appointment. If you need to take a break to rest your jaw, for instance, let the dentist know. If you know you have weakness in your face, tongue, and jaw, tell the dentist in advance so that they will know to let you rest periodically. They can work that out. Sometimes it helps to close your mouth for a bit, and get a break from holding it open the whole time.
Take care, Erin PS It is a good practice to bring a list of current medications to your dentist appointment, too. |
Annie,
For my situation, is taking 60 mg mestinon at a time too much? Can i just break it half and taking it every four hours instead? For the exersise thing, i asked her if i can go to the gym. She said "yes, why not" it seems like she does not expertly know much about MG. |
Yes, Erin, that's correct. But even if they take everything into account, that doesn't mean that a MGer won't have a reaction to what is done.
I have an awful time after an eye appt., when they give numbing drugs and Atropine (which does the opposite of Mestinon). So many ways we can become worse! You can start out with 30 mg. if you so choose. But I would not take it more often right away, not until you know how you are doing on it. I am not a doctor and only a neuro can make recommendations. If you have questions, call them up! Exercise is fine if someone with MG isn't new to it or is stable/sufficiently treated. Mestinon is only a "helper" drug and does nothing for the underlying autoimmune antibody attack. MG is also a "supply and demand" situation. Mestinon does provide more "muscle gas." But if someone does too much, it can be like drinking water. The effect is diminished with increasing activity (or heat or stress, etc.). In other words, the more one does, the more acetylcholine is needed. Take it one day at a time and see how things go! ;) Annie |
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May i ask what kind of medication are u on? |
It's a very long, ridiculous story. Suffice it to say that I'm only on Mestinon. I also take Flovent (inhaled steroid), due to the fact that Mestinon caused asthma. So it too treats my MG.
Do I need more treatments? Yes. Do I trust those neurologists in my state to help me? Well, considering that they consider me a whistleblower (filed medical complaints against them after I found out that they intentionally (allegedly) hid a positive antibody test from me), I CAN'T get additional treatments. "If I can bathe, clothe, and feed myself, I don't need additional treatments." As if. Play nice with your neuro, even if he or she isn't perfect. :cool: Annie |
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