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Not sure if I have Drs says possible.

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Old 03-18-2017, 07:07 PM   #1
Kimg
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Default Not sure if I have Drs says possible.

Hi

I have enclosed a photo of my eye which will not stoop but the crease is different than the other eye.
This difference is noticed halfway through the day.
When I read as well. It feels fatigued.

About 8 years ago, I was diagnosed with metabolic myopathy. Not from tests but from symptoms alone.

I need to rest my muscles after exercising ( typically need to stop any repetitive activities) and just test them. Can't ride s bike long, blow drying hair, etc.

It wouldn't make much sense that I'd go 8 years and THEN get eye involvement so I'm not sure if the metabolic myopathy is core t and this is just an added extra with the possibility of MG being a new alament.

The dr did emg bloodwork and all was negative. He also did MRI of brain to be safe.
He says this is typical of MG do he have me medicine and said if it helps, it's most likely MG

He said that it could just be ocular and most people never get general but that's not what I read. He also said that perhaps my muscle fatigue ( metabolic myopathy) has something to do with this but that wouldn't make sense either

I will try it tomorrow.

Here's the thing. When I see this heavy crease in my eye it will go away if I close my eyes tight for 2 seconds but then when I look in the mirror ten minutes later it's there again. Once again I just. Lose my eyes tight for a sec and it's gone.

Sound familiar?

Sorry not sure how to post a pic ... will try

Thank you!
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Old 03-18-2017, 07:37 PM   #2
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If you use the Manage Attachments feature underneath where you post, you can upload photos from your computer
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AnnieB3 (03-19-2017)
Old 03-19-2017, 08:24 AM   #3
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I would like to comment on your muscle weakness symptoms.

There is a vitamin deficiency that can be identified with a DNA test, involving Biotin. One of our neuropathy posters was just diagnosed with this:

https://www.neurotalk.org/1238782-post301.html

The post after this one is one of mine expanding on that diagnosis:

https://www.neurotalk.org/1238787-post302.html

according to one of janieg's links when a person is heterozygous (one gene affected) for this Biotin error, symptoms may only occur in adults after stressful activities and they may limp around otherwise with confusing symptoms. Children with the homozygous (both genes' missing) will present with symptoms in infancy or childhood.

It is something to think about. If you get the DNA testing, look for methylation errors as well.(affects B12 and folate activation) Our good ole FDA has blocked the OTC gene testers from evaluating the test for consumers, so you have to look up the results on the internet yourself to evaluate your various results.

Treatment for this involves high dose Biotin supplements. Biotin is B7 and normally consumed in micrograms. To treat this deficiency 5 to 10 milligrams are used once a day.
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AnnieB3 (03-19-2017)
Old 03-19-2017, 08:43 PM   #4
AnnieB3
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Hi, Kimg. Welcome!

As you can see by this site, there are many mitochondrial diseases. In order for you to be properly diagnosed, they would need to do a muscle biopsy. Of course, you would need to see a neuromuscular expert first, to be fully evaluated for other diseases as well.

Mitochondrial Disorders

Do you mind my asking where you live? That may affect the experts you can find.

Some diseases, such as CPEO have a progressive eye involvement. It may progress so slowly that you might not notice your eyes are affected.

Chronic progressive external ophthalmoplegia | Genetic and Rare Diseases Information Center (GARD) – an NCATS Program

Was the medicine the doctor gave you Mestinon/Pyridostigmine Bromide? That's a typical drug for MG. Were you given any direction of how much to take and when to take it?

Try this. If you have one eyelid that is dominantly "droopy," then pull up on that eyelid for ten seconds. Watch your eyes. Does that eyelid go up and the other eyelid go down? That's called enhanced ptosis and is seen in MG.

There's another test called the Ice Pack test. You could try putting a cold washcloth on the affect eye(s) for a few minutes. Then see if that makes any drooping better. You could also take photographs before and after this test and the one above. Then compare them. Do it with the same head tilt, lighting, etc.

There are other signs of ocular MG that a neuro-ophthalmologist (not a regular eye doctor) can test for. Do you have one in your area?

That doctor is incorrect about most people having ocular MG. Most people progress (or start with) generalized MG.

Are you short of breath? Do you have swallowing issues?

The important thing now is to find an expert to fully evaluate you. In the meantime, if you can't move, breathe, or swallow well, then you need to seek out emergency care.

What else can we do to help you?


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