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Old 05-16-2007, 02:24 PM #1
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Default Not diagnosed but...

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

Last edited by jackieinbama; 05-16-2007 at 02:54 PM.
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Old 05-16-2007, 06:45 PM #2
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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!
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Old 05-16-2007, 11:03 PM #3
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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,
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Old 05-17-2007, 09:04 AM #4
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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
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Old 05-17-2007, 11:13 PM #5
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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,
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Old 05-19-2007, 08:50 AM #6
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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

Last edited by Gabe; 05-19-2007 at 08:52 AM. Reason: spelling/typos
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