I have been on this website before getting information on B12 defieciency. I have pernicious anemia and have found alot of great info on this and the braintalk forums however, since diagnosis of p.a. my levels have increased significantly over the past two years and are now way above the normal range. My neurologist has said that I probably have perminent central nervous system damage from B12 going so long undiagnosed, but in January I had a lumpectomy and radiation therapy for breast cancer and since then I have taken a downward spiral with my health.

Last month the neuro sent some blood work to the Mayo clinic. Not sure what tests were run but all came back normal. Yesterday, went back and he has sent out more blood work and one is an mg panel. After reading online about this disease, some things really sound like me while others not so much.

Here are some of the symptoms I've been dealing with the last two years:

extreme fatigue
muscle aches/spasms
hoarseness/complete loss of voice
tightness in chest/ breathing strained alot of times but not to point of danger
migrane headaches brought on by weakness in neck (sometimes I feel like I just can't hold my head up)
can't make it through Wal-mart, have to ride in one of their scooter chairs
light-headed/dizzy, can't step up on step stool or doctor's scale without dizziness
blurred vision
I have some days where I feel fine(maybe 1 or 2 a week) almost normal and others where I feel like I've been run over by a mac truck

There is more but these are the most significant. I know that the B12 def. is responsible for some of my problems, but can't be attributed for all of them.

Does this sound like mg or am I just grasping at straws?

Thanks,

Jackie

Hi, Jackie.
One thing that I learn while dealing with MG was that this condition has many symptoms and different presentations from one person to other.
You can find about symptoms in the sites related on the stick.
See, for examplo, this
http://www.ninds.nih.gov/disorders/m...nia_gravis.htm (Myasthenia Gravis Fact Sheet - Learn about this disease, including causes, symptoms, who gets it, diagnosis, treatments, and what is being done to help.)
Good luck!

Many of your symptoms do sound like MG, but there are also many other conditions that cause fatigue. That is why MG can be so difficult to diagnose. One of your symptoms in particular that sounds very like MG is the difficulty in holding your neck up. Weakness in the neck can be a biggie in MG. Has anyone tried the old "finger held above eye level" quick test on you? It's one that a lot of doctors seem to do as the first quick assessment of MG, given that the eyelids often show fatigue before other muscle groups. Hold a finger slightly in front of your face, but slightly above the top of your head, so that you need to glance up at it. Without raising your chin, look up at the finger. A myasthenic will have great difficulty in maintaining this upward gaze. Within just a few seconds, the eyelids will start to want to close.
If the blood test comes back positive for MG, you most likely have it. However, if it comes back negative, you might still have it. As I remember, about 20% of myasthenics are sero-negative. For your sake, if you have MG, I hope you are sero-positive, since the road to diagnosis for a seroneg MGer is a long and rocky one.
Hugs,

Thank you Lois and bluestone for your replies. To clarify a little I should let you know that I was feeling some better last summer but had started taking a downward turn in the fal. In Dec. recieved news that I had breast cancer. In January I had a lumpectomy and MammoSite radiation therapy(5 day, twice a day internal radiation). It is after the surgery and radiation that has sent me into this "episode". I am sure some of the fatigue may be from that, but most of the people that had surgery and treatment around the time I did are well on their way to returning to normal activity and I am far from that.

I should also say that I have been having a droopy eyelid and have had problems with my vision since 2000. I had an Aide's pupil that caused one of my pupils to stay dialated. Neuro-opthamologist said it was not dangerous and would resolve itself in one year. Well, 7 years later, the pupil has returned to normal size in light, but it is slow to react in dim light, and doesn't fully dialate. Opthamolgist that I see now doesn't worry about it because it will dialate with drops. But when I am in dim light, my vision gets really blurry and strained. I have glasses, but some days I can see clear and on others I can't see anything without them and some days can't see with them.

My medical oncologist was the first to mention mg to me. He asked if I had trouble swallowing and I said that I used to but had an endoscopy in 2005. Gastronentrologist stretched my esophogus and I don't have much trouble now, but sometimes I tire out while eating. My husband will look at me and say are you all right? And I say, I'm just resting. Anyway, I really would like to finally have some sort of diagnosis for all my problems, but from reading, mg and it's treatments sounds scary.

Thanks again for your prompt info.

Jackie

Well, I've been coping with MG since the mid 1970's. I also went through radiation treatments for cancer, and noticed extra fatigue both during and continuing after the treatments. I hope you get a firm diagnosis of something, I know how unsettling it can be to be in diagnosis limbo.
Hugs,

Hi Jackie,
I have a similar problem with my vision...went through four prescription changes in one year only to later find out that I had Myasthenia Gravis. It depends on the day, the time of the day, the level of light, etc. Sometimes I need glasses and sometimes I don't. The vision in my right eye is much worse than the vision in my left eye.

My voice used to be very hoarse by the end of the day - people always asked me if I was sick. I started having difficulty swallowing too. I was always clearing my throat because it felt like there was something blocking my ability to swallow. By the end of a shopping trip I felt like I was walking through a swamp with weights on my legs.

It took a long time to get a diagnosis - my first problem was optic neuritis which is a common first symptom in MS - My primary doctor did the MG panel blood test and it came back positive... She referred me to a neurologist who later referred me to an specialist in MG. He undiagnosed me did a bunch of tests - thought maybe Lymes disease - then ALS - I went through the University and then on to Mayo Clinic in Rochester. They confirmed the original diagnosis of MG - but the whole process took 2 1/2 years - lots of med changes and tests. It is maddening and scary to wait for an answer when all you want to do is feelbetter.

I am glad you found us here and hope that you get answers soon.
Gabe

Gabe, your road to diagnosis sounded strangely familiar, at least as far as the diagnosed, undiagnosed part of it goes. Why is it that every neurologist needs to re-diagnose you? It's as if they come out of medical school unable to accept the diagnosis of any other neurologist. Which I guess can be good when you reach the un-diagnosed stage, and are looking for someone to re-diagnose you!
Hugs,

I am having a bad day after having three good days in a row. Darn it! Whenever I have a couple of good days together I start to think that maybe I have turned a corner and whatever this is has finally gone away, but then I wake up and here I am, back where I was. During my good days I worked in the yard, went to church, cooked, visited with family, and all the things I love to do. Then I have a day like this and it is so disheartening. Those around don't quite understand. On my good days they say, "What have you done different?" and believe me, I have gone so far as to track everything I've done or eaten to try and answer that question.

I know I don't have a diagnosis, but I think you here can understand my frustration and I appreciate an outlet for my frustration. I also post on breastcancer.org, but all of my friends there are now returning to a somewhat normal life, if there is one after cancer, and although supportive, they don't understand what I am dealing with.

I hope that the bloodwork that I had done will show something. I had an emg last month but my neurologist didn't really say what the results were. Last April I had an emg ncv and sfemg. It was done with a different neuro. and he didn't tell me what my results were then either but I figure that these test must not have shown much because the docs. didn't tell me the results.

Anyway, thanks for letting me vent.

Jackie

Hi Jackie -
Happens to all of us! Part of the deal is rationing your energy rather than using it up when you feel good. I do it all the time. I have a day where I feel almost "normal" and I grocery shop, do laundry, mow the lawn take my kid out to do something fun and WHAM!!!! The next day I can't do a thing - sometimes takes a week to recover. Do I learn? NO! I always feel like I need to get as much done as possible in case I can't do anything again for a while. It helps to be diagnosed because at least I have more good days than bad with the treatments I get....it takes a while to catch on but you will. I try to think about it like this... a person who runs marathons doesn't start out running 30 miles in a day, they do a little at a time, build up their endurance and try to get stronger. If they ran 30 miles their first day training they wouldn't be able to run again for a week and would feel horrible to boot...so take it a little at a time. Don't be too hard on yourself. I finally hired a neighborhood kid to mow the lawn and have someone come clean my house once a month - it helps, it is definetly worth the money and I can do other things that I enjoy with the energy I have...
Hang in there.
Gabe

Gabe,

You're right about saving energy. I know that, but I get sooo bored sitting around. I read and watch tv, fold clothes, but there's only so much....
Yesterday I was having a down day so decided to sit by the pool to asborb some vitamin d. Here in norhtern Alabama, I got pretty hot, so decided to float in the pool, then decided I could swim a few laps to strengthen my muscles. Felt okay while I was doing it, but last night...My muscles were so sore and I felt drained. I just can't believe how far I have deteriorated since last summer. I could swim 10 laps the length of the pool before I was this tired. Yesterday I swam about 4 laps the width of the pool. My muscles ache, not sore like I excercised. I have gained 20 lbs. since I had my lumpectomy in January and I'm miserable.

I sure hope I find out something soon.

Loisba- I was on Pamine until a couple of weeks ago. Couldn't afford to have it refilled, so didn't. I can't tell if I feel any different on it or not. I was having spastic colon, and I think I was on it long enough for the colon to heal.

Thank you guys for helping me out. I read the symptoms of mg to my mom on the phone yesterday and she said, "That's you"! It does sound alot like me,but have mixed feelings about being diagnosed. The treatments sound scary to me.

Jackie