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Old 09-25-2017, 12:56 PM #1
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Default Awaiting results

Hi everyone, I've been lurking on this forum and other websites for about 2weeks now. Happy to see there is a nice online support forum.

Two weeks ago i went to an ophthalmologist due to bouts of double vision. I experience it the most in early morning and at night. Sometimes to the point where i would drive with one eye closed. I assumed, at 40, my vision was just getting bad and i needed glasses. To my surprise the doctor ordered an MRI and blood work and said he believes it to be myasthenia gravis. My vision is still good.

Since the docs assumption of MG i've been hyper focused on any potential symptom. I'm more the quiet type that suffers in silence until i know 100% i need help. Then i get yelled at. Anyway, i've noticed this past year that yard work that usually didn't bother me now requires me sitting down 2 or 3 times. I've never had muscle failure but i tire a lot easier than before. My hands and feet tingle, kinda numb at the end of the day. Trouble focusing, double vision. I catch my feet on thresholds when i'm tired.

I dont really know if these are signs or if i'm just getting older . Just wanted to reach out and here others opinions. Thanks for reading and the support. You guys rock.

Brodi
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AnnieB3 (10-08-2017)

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Old 09-26-2017, 02:14 PM #2
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So i called my PCP today as my double vision has been worse all day. I'm just not feeling right. foggy, weak and light headed. Its not that i cant move it just exhausting to. I went to lunch with my wife and by the end of our meal my hands were tingling and i felt as though i could nap, which is extremely rare for me. A little nervous and hoping having two doctors review my symptoms will speed up a diagnosis.

I am scheduled to see my ophthalmologist again October 5th to go over my MRI and blood results. I'm just waiting on blood results that the laboratory says are held up due to mechanical difficulties. I asked for the results today and they gave me a speech about how only the doctor is allowed to receive the results. What kinda BS is that!

again thx for reading.

-brodi
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AnnieB3 (10-08-2017), ErinBear (09-29-2017)
Old 09-26-2017, 04:58 PM #3
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Brodi,

Sorry you haven't had a response yet. Given your most recent symptoms, I highly suggest that you go to the ER for evaluation. If you have MG, those signs could indicate an exacerbation or a MG crisis. Numbness or tingling can indicate not enough oxygen getting to your tissues.

In the ER, they can check your O2, do pulmonary function tests, an arterial blood gas, and do a good neurological exam. They can also do an Ice Pack Test.

Napping is one of the first signs of MG. When a person with MG can't stay awake, that is a warning sign of an impending exacerbation or crisis. The difference between those two? Bad and worse! Either one should make you seek out care in an ER—by dialing 911. Don't drive. Driving when MG is bad is like driving drunk.

Call the doctor's office back (after you seek help) and ask the doctor to call back. The other staff are not legally able to give you results. I know that sounds silly and ridiculous, but it is necessary. Not all patients respond well to test results.

MG can be deceptive. You might think you are "ok" when you aren't. The best place for you is in an ER.

We can all talk to you after you get some help!

Annie
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Old 10-03-2017, 09:55 AM #4
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Anne, thank you for your response and your concern. I am taking this very serious.

My PCP bloodwork came back and so far the only thing off is my b12, which could create the symptoms i am having. I'm hoping that is all. I also have G6PDD, which could make the symptoms of low b12 a bit worse.

My antibody bloodwork is due back tomorrow and i should hear from my nuero ophthalmologist.

Quote:
Originally Posted by AnnieB3 View Post
Brodi,

Sorry you haven't had a response yet. Given your most recent symptoms, I highly suggest that you go to the ER for evaluation. If you have MG, those signs could indicate an exacerbation or a MG crisis. Numbness or tingling can indicate not enough oxygen getting to your tissues.

In the ER, they can check your O2, do pulmonary function tests, an arterial blood gas, and do a good neurological exam. They can also do an Ice Pack Test.

Napping is one of the first signs of MG. When a person with MG can't stay awake, that is a warning sign of an impending exacerbation or crisis. The difference between those two? Bad and worse! Either one should make you seek out care in an ER—by dialing 911. Don't drive. Driving when MG is bad is like driving drunk.

Call the doctor's office back (after you seek help) and ask the doctor to call back. The other staff are not legally able to give you results. I know that sounds silly and ridiculous, but it is necessary. Not all patients respond well to test results.

MG can be deceptive. You might think you are "ok" when you aren't. The best place for you is in an ER.

We can all talk to you after you get some help!

Annie
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Old 10-05-2017, 11:35 AM #5
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so.....
met with the nuero ophthalmologist today and after a month of waiting on blood results only 2 are back. I tested negative on blocking and binding antibodies and the modulating is still in lab .

My MRI did show a bit of scar tissue on the left temporal that he "isn't concerned about" yet he wants me to get another MRI in several months to make sure its not growing.

Anyway, the ophthalmologist hasn't ruled out MG, but there isn't enough proof yet for a diagnosis. I see him again in 2months to see where my symptoms are and he is sending everything he has to my PCP. I'll continue to post my results here.

thx for reading.
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Old 10-08-2017, 08:28 PM #6
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I had a severe B12 deficiency years ago. Not fun. They need to attempt to figure out WHY you have a deficiency. How low is your number? Did they test your homocysteine or methylmalonic acid? Those can be elevated during a B12 deficiency. My deficiency was caused by a lack of stomach acid.

B12 can affect the brain. Methylcobalamin is the best form of B12, going to work right away in the bloodstream. Cyanocobalamin has to be converted by the liver into methylcobalamin before going to work. Given that there is usually a six year supply of B12 in the liver, you may have had this deficiency for some time. And it can take as long to recover as you have had the deficiency.

Cancer can also suck B12 out of the body, given that it goes straight to areas of cancer. I hope you don't have that!!! But they really do need to figure out why you have a deficiency!

Some people with MG only have a positive modulating antibody. A high level of modulating antibodies can also be a sign of a thymoma (tumor of the thymus). Kind of weird that the modulating AB is slow; they are all done at the same time.

You need a MG expert neurologist, not only an eye doctor! They can do a thorough clinical exam that can show fatigable muscle weakness, the hallmark of MG. They can do all sorts of other tests, such as the Ice Pack test, Tensilon test, RNS/EMG/SFEMG, and MuSK antibody test. LRP4 is now available as well.

Do you have ptosis? I'm assuming you do because of the double vision! Obviously, you have binocular DV, since that goes away when you close one eye. Do you have an eyelid that is more dominantly droopy? If so, lift up on that one for about 10 seconds. Does that one go up and the other eyelid go down? That is called enhanced ptosis, and is another sign of MG. There's also Cogan's lid twitch and many other ways a neuro-ophthalmologist can test for MG.

You can always do an Ice Pack test at home. Take pics of any ptosis beforehand. Then put a cold washcloth on your eyelids for a few minutes. Then take a pic afterward. Use the same lighting, head tilt, etc. for the photos.

An ophthalmologist is NOT qualified to comment on MRI results. Sorry, but they are not neurologists. Get a copy of the MRI CD and bring with to a neurologist.

I hope you'll have answers soon. You may want to consult with an internist as well.

Annie
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