Questions

sham0968 · 01-29-2014, 05:37 PM

Does your symptoms of mg come and go or are they there on a regular basis? Are there different cases of mg like mild to severe. My symptoms seems to stay on a regular basis but gets more pronounced if I get stress or use muscles too much. I have had problems chewing meat because my mouth gets tired since 2006. I have had problems writing because after a few minutes my hands gets tired, also had that problem since 2006. Now I cant hardly eat salad or fruit or nuts. I can start out eating them and my mouth starts getting tired and hurting so I stop or almost get choked. I have had droopy eyes at times but not to the extent of that woman on the medical information.

bny806 · 01-30-2014, 12:21 AM

(i'm not confirmed with a diagnosis, just get ivig).. but my symptoms are always there, but fluctuate with all those same things, and heat-a hot shower will turn me into a big lump of jello.. and hormones make it all worse too - for about three days.. I will be freaked out that I can't swallow anything without choking for days.. and then get my IVIG and It's hard to imagine ever having a hard time! so weird

sham0968 · 01-30-2014, 12:21 PM

I didn't know that hot shower makes your legs weak in mg. I have had that before and that's why at one time I was confused weather I had MS or mg but my symptoms are more like mg because my muscles gets better at rest and worse when I use it.

cait24 · 01-30-2014, 03:21 PM

Early, in my disease, my symptoms would come and go and I would go back to feeling normal. I can remember the date that changed. Dec 18, 2012. I experienced my first episode where my legs were virtually paralyzed and would not move. I had my first fall. Since then, despite mestinon, prednisone and cellcept, I have never had another "normal" day again. It just goes from better days to worse days. I believe MG is progressive. We just get better at dealing with it so life "feels" more normal.

kathie

Panorama · 01-30-2014, 07:36 PM

Hi sham098,

Quote:

Originally Posted by sham0968

Does your symptoms of mg come and go or are they there on a regular basis? .

You have landed in a great place in this forum. There are some very knowledge people here. I've only been here a few weeks, but I have learned so much, and it has made a big difference. Another forum member directed me to a great document that is very helpful. It is available for free from the following link:

http://www.myasthenia.org/LinkClick....w%3d&tabid=125

The document is entitled Myasthenia Gravis: A Manual for the Health Care Provider. It is published by the Myasthenia Gravis Foundations of America. It is in PDF format. You can read it online using a Web browser, download it and read it offline with an Acrobat Reader, or you can have it printed and bound. I had mine printed. I will be taking it with me to my next appointment with my neurologist. I'm even going to put the PDF file on a thumb drive and give it to my doctor.

While the document is intended for healthcare professionals, there is much in it that can be helpful to us. None of us will read it from cover to cover or understand the more technical aspects. I found the sections on treatment to be especially helpful for me.

There is another recent thread on the topic:

http://neurotalk.psychcentral.com/thread200174.html

Take care,

-Mark-

sham0968 · 01-31-2014, 09:26 AM

Quote:

Originally Posted by cait24

Early, in my disease, my symptoms would come and go and I would go back to feeling normal. I can remember the date that changed. Dec 18, 2012. I experienced my first episode where my legs were virtually paralyzed and would not move. I had my first fall. Since then, despite mestinon, prednisone and cellcept, I have never had another "normal" day again. It just goes from better days to worse days. I believe MG is progressive. We just get better at dealing with it so life "feels" more normal.

kathie

See this is why I am pushing to find out what is wrong with me. I want to start some meds that can help me and yeah I still may get worse but I am doing something to find out. My friend said just be happy that your blood work is fine. I am happy about that but I know something is wrong and I'm not going to stop till I find out why .In 2006 I had early symptoms and let it go when doctors couldn't find anything. nobody tried to send me to neuro but I am not going to stop this time. The neuro that seen me told me not to. but he scared me because I never had doctor talked to the way that he did. He told me that he felt sorry for me, and worried and I said why and he said because you have a muscle disease..that freaked me out because I had not heard of mg. Sorry for long reply.

sham0968 · 01-31-2014, 09:31 AM

Quote:

Originally Posted by mpage

Hi sham098,

You have landed in a great place in this forum. There are some very knowledge people here. I've only been here a few weeks, but I have learned so much, and it has made a big difference. Another forum member directed me to a great document that is very helpful. It is available for free from the following link:

http://www.myasthenia.org/LinkClick....w%3d&tabid=125

The document is entitled Myasthenia Gravis: A Manual for the Health Care Provider. It is published by the Myasthenia Gravis Foundations of America. It is in PDF format. You can read it online using a Web browser, download it and read it offline with an Acrobat Reader, or you can have it printed and bound. I had mine printed. I will be taking it with me to my next appointment with my neurologist. I'm even going to put the PDF file on a thumb drive and give it to my doctor.

While the document is intended for healthcare professionals, there is much in it that can be helpful to us. None of us will read it from cover to cover or understand the more technical aspects. I found the sections on treatment to be especially helpful for me.

There is another recent thread on the topic:

http://neurotalk.psychcentral.com/thread200174.html

Take care,

-Mark-

yes I am so glad that I found this forum. It
is so great to talk to someone that knows what I am going through and can share what they have been through

sham0968 · 01-31-2014, 10:58 AM

Quote:

Originally Posted by sham0968

See this is why I am pushing to find out what is wrong with me. I want to start some meds that can help me and yeah I still may get worse but I am doing something to find out. My friend said just be happy that your blood work is fine. I am happy about that but I know something is wrong and I'm not going to stop till I find out why .In 2006 I had early symptoms and let it go when doctors couldn't find anything. nobody tried to send me to neuro but I am not going to stop this time. The neuro that seen me told me not to. but he scared me because I never had doctor talked to the way that he did. He told me that he felt sorry for me, and worried and I said why and he said because you have a muscle disease..that freaked me out because I had not heard of mg. Sorry for long reply.

Yeah Im getting use to and not panic when I have symptoms and getting use to heavy and weak legs and at times tinging, pins and needles. Here lately I have been exercising a little, not nothing that will strain my muscles. Did you go back to walking if you do not mind me asking.

southblues · 01-31-2014, 11:07 AM

I have started back walking. I don't go far, and I don't go fast, but I do go. I am doing better with it since I got on cellcept.

Panorama · 01-31-2014, 11:37 AM

Quote:

Originally Posted by sham0968

See this is why I am pushing to find out what is wrong with me. I want to start some meds that can help me and yeah I still may get worse but I am doing something to find out.

You have to push them sometimes. The state of my diagnosis in mid November was a positive blood test. My primary care doctor refereed me to a neurologist in the group. The earliest appointment I could get was February 3rd. I still have this appointment, but it will be the second. They found time to see me earlier.

Think about this for a moment. My doctor knew I had MG in the second week of November because of my positive AChR-ab blood test, yet my treatment was not likely to start until the first week of February when I would be seeing a neurologist for the first time. What was my doctor thinking?

By November 22nd (just before Thanksgiving) I was having increasingly more severe symptoms. I was panicking. I work in the On-Demand Transportation Industry (I drive a taxicab). The holiday season is our most lucrative time of the year. I was looking at the real possibility that I would not be able to work. My doctor wanted me to do a CT scan. How could I afford this if I could not work? I was a self-paying patient at the time and the CT scan would have cost me $500 (I now have health insurance through the Affordable Care Act).

I sent the following fax on November 22nd to my primary care doctor:

After sending you the earlier fax, I did a bit of research on Myasthenia Gravis. I have come to believe your diagnosis is spot-on. The list of symptoms are very much what I have been experiencing. [BTW doctors never tire of hearing the phrase: "your diagnosis is spot-on."]

http://www.medicalnewstoday.com/articles/179968.php

These include:

1. The double vision I was experience earlier, particularly when fatigued.
2. Trouble chewing.
3. Symptoms less severe after periods of rest and sleep.
4. Trouble swallowing.
5. Face mussels weak.
6. Jaw mussel weak.
7. Speech soft and nasal. In my case speech is very difficult.
8. Fatigue.

Some of these symptoms go back a long time, particularly the trouble chewing. I thought at the time this was due to my dental problems, but now I realize it was something else. [I did not tell my primary care doctor about my weak jaw and trouble chewing for over a year because I thought the cause was bad teeth. Had I told him, he would have diagnosed MG much earlier.]

I have also been fatigued for quite some time, but I assumed this was due to my work. Driving a taxicab 50 to 60 hours a week is very taxing. I assumed the fatigue was due to this work schedule. The only time I have taken off in the last 5 or 6 years was the 10 days in September when I was extremely sick.

The above coupled with the results from the blood test appear to point directly at MG.

What is the purpose of waiting three months to see Dr. Ngo? [my neurologist who I was scheduled to see in February for the first time] Will I need to see him for treatment, or is there something you can do?

I’d like to begin treatment as soon as possible. Is it possible to begin treatment today? With the upcoming holidays and Dr. Ngo busy schedule, it might be some time before he can see me. If this current episode is like the other two episodes when the symptoms passed in 7 to 10 days, waiting might not be a problem. If this current episode follows a similar trajectory, I may be symptoms free in a few days, followed by a symptom free period of two to three weeks.

But if it takes longer for this episode to pass, it will start to have a very negative impact on my life. I’m not getting enough sleep, as I am awakened every hour to clear the mucus out of my throat. I’m also unable to eat any solid food now, but I am getting proper nutrition with a product called The Ultimate Meal.

I then went to bed and awoke with a voice message that they had ordered a prescriptions for something called "Mestinon." My neurologist also found time to see me on the Monday following Thanksgiving, our first meeting. The result is that I am keeping, what would have been my first appointment with a neurologist on Monday. With only one visit to a neurologist, I am well into treatment--three weeks on Prednisone. If I had not found the courage to become more proactive, where would I be today?

You do not work for your doctors. They work for you. I know they can be intimidating, but they are not the boss of you.

-Mark-

P.S.: What a wonderful world we live in. I send a fax to my doctor and awake with drugs waiting for me down the street. I think I will send my doctors a fax telling them that I have a headache. I want to see if there is a Vicodin prescriptions waiting for me at CVS when I get up to go to work tonight.

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