[AnnieB3]

I am also newly diagnosed, I am also so confused about what I am supposed to do and how bad does it need to get before the doctors change meds or whatever they can do. I take 90mg mestinon every 3-4 hours plus an extra 60mg in between if i can't breath, 50mg prednisone daily, starting Imuran today, have had 2 5 day courses of ivig in the past 2 months. I live in a very rural area and doctors here don't seem to know much about mg. I am traveling 2 hrs. away to see a neuro. i can't keep my head held upright for more than 10 min. very short of breath, choking on my own spit, and my vision, when I can keep my eyelids open is horrible. The doctors have never given me any info on mg or said if this or that happens, do this. i just wonder if anyone else out there has had this experience, and how they handled it?

Hi, wvfox, and welcome! I didn't want your questions getting lost in the other post. MG can be overwhelming. This is a great place for information and support. When did you get diagnosed?

Was it the doctors who don't know very much about MG who said to take an extra 60 mg. in between doses? Can you explain that more clearly? Do you take another 60 mg. during that 3 - 4 hour time period? If so, you might be overdosing.

If you get too much Mestinon and, therefore, too much acetylcholine, you can have a cholinergic crisis. That's where you have too much of it getting to your muscles and they get weaker. More is not always better with Mestinon.

What happens with too much is that the neuromuscular junction literally gets flooded with acetylcholine. It's dangerous and just as bad as an "MG Crisis" where you don't have enough of it.

How do you feel 30 minutes after you take that extra dose? Is it generic Mestinon? Is it possible for your docs to switch you to Brand Mestinon by Valeant?

If there was ever a good case for home health care, it's living in a rural area. Does your insurance allow for you to have IVIG at home?

There are a lot of ways you can monitor your MG. You can have an oximeter at home so that you can know what your normal oxygen/O2 saturation is and when it gets worse. You can get a good pulmonologist to do breathing tests to see what your baseline is or how badly you're doing. They are an integral part of MG care - not only neurologists!

When you can't swallow (i.e., can't intake food or liquids), can't breathe in or out well or can't move some muscle groups or have generalized weakness where you feel as if you're walking through quicksand, it's time to dial 911.

What you are describing sounds like an exacerbation, which is one step away from a crisis. And the problem with MG is that you sometimes can't tell if you're headed that way and it can happen quickly.

It sounds like your doctors are doing the basics. You're on a pretty high dose of Pred. When did you start that? Did they give you any directions like to take extra vitamin D3 and Calcium? Or take flax, krill, olive or fish oil? Did they give you any precautions about Pred like to watch your salt intake? Anything?!

If you have questions, please ask!

It sounds to me like you need more help, like more IVIG. But ask, again, if you can have it done at home so that you don't have to wear yourself out by driving 4 hours. Don't hesitate to get help, okay? And stay out of the heat because that will make you much worse.

Do you have someone at home with you?

Let us know what else you need. I'm sorry you aren't doing well.


Annie

[cait24]

I am so sorry you are going through this. I hope you are not going through this all by yourself. Do you have someone that lives with you that can drive?

Annie, is absolutely right that if you can't swallow and have trouble breathing you should go to the ER. They can admit you, support your respiration and perhaps give you plasmaphoresis which will filter the antibodies from your blood and make you feel better. If you think you are stable enough to stay home, I would call your neuro and tell him how bad it is and ask him what you should do. There is a lot of good coping and management techniques here and on other sites. I was drinking all wrong, I watched a video on the internet about how to swallow with MG and it really helped. You should do as little physical activity as possible until you can get your MG stable. At first, I spent a lot of nights sleeping in the recliner because it was easier to breathe. Try not to go up and down steps if possible. Limit activites raising your arms above your head, such as washing and styling your hair. Eat your meals an hour after your mestinon when your muscles will be the strongest. Eat easy to digest and chew meals. I eat a lot of yogurt and pudding. Chewing is a problem for me, so I eat a lot of caserole type meals made with overcooked vegtables, potatoes and noodles. Thick soups are good too. I have a lot of trouible swallowing carbs, even bread unless it is moist with gravy. I sit in a recliner that supports my neck so it does not get weak. When a muscle group gets really weak, I put a bag of ice on it and it helps. Muscle communicate better with nerves when they are cold. Take cool showers, don't use hot water. Try to keep the house on the cool side. Stay out of the hot sun.

I know this is almost impossible, but try not to worry and fret. Stress just makes this disease so much worse very fast. I will look for some good video and links to post to help you a little later, especially the swallowing one. And rest, rest, rest.

I have been battling MG for a couple years, but I only was definitively diagnosed 6 months ago. It took me a year to learn my limitation and how to accomadate my "new normal". It is a big adjustment that affects my every waking and sleeping moment. But it is manageable once you find the right combination of treatments that work for you.

My thoughts and prayers are with you and your family. If you need to talk, I will check in several times tonight. You have found a very supportive, knowledgeable, kind group to help you through.

You have the strength for this,
kathie

[cait24]

Here is the good link for MG and swallowing:
http://www.youtube.com/watch?v=VolCFZre4Ys.

Here is a couple of of good informational links on managing with MG and symptoms and treatments:

http://myasthenia.org/LivingwithMG/I...Materials.aspx.
http://www.myasthenia.org.au/html/background.htm.
http://mda.org/disease/myasthenia-gravis.
http://www.mayoclinic.com/health/mya...gravis/DS00375.

Let me know if I can be of any more help. When you feel up to it, perhaps you would like to share your story about the onset of your MG. Perhaps some members can suggest some coping mechanism. MG hits everyone differently. I have learned most of what I know about MG by sharing and exchanging with members on this site. I do not think I would have been able to manage or cope without this group.They are a great group of people.
thanks
kathie

[wvfox]

Thank you both so very much. I was diagnosed in Jan. I have been sick for 7 years though, I just kept getting the run around. The neuro who dx me told me to eat Mestinon like it was candy, at one point I was taking 120mg every 3 hours. I did get too much in my system, started having extreme muscle cramps, he wanted me to take atropine but the pharmacy was unable to get it. I started taking levisin instead 5 .25 tablets 4 times a day. He refered me to the doctor who is 2 hours away who told me to back off on the mestinon, put me on prednisone and sent me to a cardio thoracic surgeon to have my thymus removed. The surgeon told me how he did a couple of thymectomies a year and how he felt it would be best to do the same cut as open heaart surgery. I'm not comfortable with someone who does a couple a year. I have ask my pcp to refer me to another doctor and am waiting to see when. I live with my husband, who treats me as if this is the flu and will all be okay, he is a very good man but he can't seem to accept this at all. My 20 yr. old daughter doesn't even know how to feel about it all, seems to be just mostly scared, she comes home every day and triess to help as much as she can. I also am raising my 5yr. old great nephew, he has been with us since August of last year, I have ask for some of the family to help with him as my husband works 6 days a week and is gone for 14 hours at a time but it hasn't seemed to matter much to them... (sorry I am a little bitter toward his grandparents who can't take him in because they can't be disturbed). I have alot of swelling in my face, neck, upper arms and chest, drenching night sweats,and my stomache seems to be swollen, I feel like I am being squeezed around my trunk. The doctor didn't tell me to take any vitamins and I hadn't because I was afraid it might ramp my body up even more against itself. i did know though to stay away from as much salt as I could. I hope I answered your ?, i'm sorry if i am rambling just so excited about talking to other people with this disease. Again I appreciate ya'll and any info is definitly helpfull.

[cait24]

I also live in a rural town. It is a 3-4 hour round trip to see my neuro. MG is a very rare disease, most neurologist have never seen a case. You need to find a neuro very experienced with MG to get the proper care. I would suggest going to a large teaching hospital and asking for a neurologist that specializes in MG, neuromuscular diseases or diseases of the neuromuscular junction. That is how I found my neuro, he has a lot of MG experience. If you post what town you live in, other member can suggest neuros in that area that they had very good experience with. At large teaching hospital, they do the less invasive thymectomy where they go in through the rib cage.

It does not sound like you were on an effective dosing of mestinon and you are having a lot of side effects with water retention from the pregnisone. I take 60 mg of mestinon 3 or 4 times a day and 180 time span at night. Too much mestinon can send you to the ER with breathing problems too. I am currently weaning off pregnisone and taking 35 mg a day.

How much pregnisone are you on? Are they weaning you off it yet? There are non-steroid immunosuppressant that work well for MG like cellcept and imuran.

The first thing you need to do is get a referral to a well-experienced MG doctor. Large teaching hospital usually have an 800 number you an call and a medical concierge to help you find the right specialist. I had to re-evaluate my entire life and activities around my disease but I have found a schedule and routine that makes my life manageable. That process will take time. But you need to listen to your body and pace yourself. Assign task to your hubby and daughter that are the most draining. For me that involved going up and down the stairs and lifting my arms. My daughter does all the carrying of groceries, carrying the laundry and taking the food to the table.

Find a good comfortable chair to rest in that supports your head. Rest and do not feel guilty about resting and having others do the work. Keep us posted on your progress and take any breathing issues seriously. Let us know how else we can help you.
MG is manageable, but it takes time to find the right combination of treatments that will work for you.
kathie

[wvfox]

Kathie thank you. I live near Beckley WV. I tried to get info from WVU yesterday since they are a MDA clinic, it is 4 hours away, I'm going to call again Monday. I started taking Pred. a month and a half ago 50 mg a day. Yesterday I started on Imuran. I get a wierd feeling in the pit of my stomache when the mestinon starts to wear off, I guess it's just air hunger. I went to the local er 3wks ago because I felt so bad, they gave me a shot of steroids and then I got a shot every other day at my pcp's for a week, it helped a little until I could get ivig. Does mg affect your vision? Mine is like looking through the heat rising off a car in the summer, it's distorted, it's also double.

[AnnieB3]

Hi, wvfox. I'm sorry you had to wait so long to get help.

It sounds to me like you're having some serious side effects from the Prednisone. You really need to talk to a doctor about it. Plus, you need someone to assess your blood pressure and see if you are having any pitting edema. With all of that swelling, you have to deal with the Pred with a doctor right away.

Having steroid shots while on Pred is not a good idea! Again, call your neurologist. Pred isn't for everyone and can cause many problems. Also, you are more open to infections while on Pred. If anyone gets sick, your chance of getting sick increases. Has your nephew had chicken pox? You shouldn't be exposed to viruses and bacteria as much as is possible.

Vitamin D3 and calcium are essential for the body and will NOT make your MG worse. Omega 3's are good prostaglandins which you can get from eating fish, olive oil and walnuts, for example. Pred is an anti-prostaglandin and it can reduce the gel coating of your stomach, leaving it more vulnerable to things like spicy foods, coffee, etc. So having good prostaglandins can help. These are sensible things to do for yourself that most good doctor will recommend!

Double vision, like you describe, is normal for MG. If you close one eye, it should go away. When muscles around the eye are weaker, the eyes can't both focus on objects the same way.

You also need more help with your MG. Do you have someone to take you to an expert? It might be a good idea to stay for a day or two to rest.

Don't hesitate going to an ER. I don't like the way you're describing the tightness around your trunk/chest wall muscles. Have you ever had an ECG? If you can get a peak flow meter, it can at least show you how you're breathing out. It doesn't matter if you're having trouble breathing in or out, if you are, you need to get to the ER.

I'm so sorry you aren't getting the support you need at home either. Maybe if you tell your husband that your disease is kind of like a car that doesn't have enough "gas" he might get it. We don't have enough muscle gas (acetylcholine) getting to our muscles. When that gas runs out, our muscles will sputter and won't "go" anymore. The difference between a person and a car is that a car won't DIE if it doesn't get enough gas!!!

I'm sorry for your nephew too. But it's very wonderful of you to look after him. The problem is that right now you're the one who needs looking after!

What else can we help with? I think you just need more care and the "right" kind of care. It doesn't appear that anyone is looking at whether the treatment regimen is working the best for you or not. I really hope you can find the right balance for you.

In addition to what Kathie said about a good, comfy chair, you can sleep in a recliner if your breathing is worse. A U-shaped pillow around your neck will greatly help to rest your neck/head muscles too.

Hang in there! MG can be managed but not if someone isn't helping! Call your neurologist and get some help.


Annie

[cait24]

When mestinon start wearing off for me about 3 - 3.5 hours after the dose, I start to break out in the sweats, I begin to feel very weak and get that huge achiness in my stomach. I keep a batch of strong ginger cookies. The ginger cookies really help settle the stomach issues with the mestinon, yogurt is also very good for that too.

The MDA clinic is a great choice, I hope they can get you in as soon as possible. I have a small center circle of clear vision, any slight turn to the right or left and I have double vision. I have to keep my head straight ahead when I walk, If I turn it slightly, I get very off balance and disoriented and begin to bang into walls. Mestinon helps the double vision, ice packs on the eye help for temporarily relief too. I am getting Prism in my glasses to also help relieve the double vision. The double vision is very typical of MG and is often the first symptom to come and often the least responsive to treatment.

I will say a prayer that they get you in MDA - Like Monday. Stay rested and safe.
kathie

[wvfox]

You guys are so sweet! I am so thankfull to have found you, it's such a blessing! I just got out of the hospital yesterday. I went thursday because the weakness was so bad. they gave me oxygen and did some test but that was about it. My pulmonary function test showed i was only breathing at 2/3 capacity, so they started me on advair 2xday. They did a ct scan, no thymoma, thank God. The neuro i saw there reduced my Lyrica and Zoloft, that did not help, I was an emotional mess by Saturday. They told me to take my mestinon as needed so I kept it at the bedside. it hit me Saturday that no one but me knew how much I was taking so I called their attention to it, at 11:30 that night a nurse finally came in and took care of getting it in the chart....... I was discharged 12 hours later. Right now I am taking at least 2 every 2 hours, and still very weak. Any suggestions on how I could possibly get some strength back? Is there anything my family doctor could prescribe?

[cait24]

How hot is it where you are? And did your sudden exacerbation of weakness follow an increase in temperature? That would be typical with MG. Some of us are more affected by the heat than others. Nerves communicate better with muscles in cold temperatures. I start feeling the effects around 70 degrees, by 90 degrees I am barely functional.

If your symptoms followed an increase in temperature here are recommendation:
1. you have to get cool. Turn on the air conditioners, fans etc. Stay out of the heat and sun, it will only make you worse. For me it is especially important to stay cool at night so I can breath and sleep so I turn the air to 72 degrees at night.

2. If specific muscle groups are weak, alternate ice packs on them to see if it helps. For me this is always the thigh muscles.

3. reduce activity, rest, rest and more rest. It can take days or a week or more to recover from an exaccerbation of weakness.

4. Stay away from any heat, take lukewarm or cold showers. DO not fold hot laundry, Wash dishes in warm water or cook over a hot stove.

Let us know what symptoms are the worse. We may have more sugestions.

kathie