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Old 06-14-2017, 05:15 PM #1
smeds219 smeds219 is offline
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smeds219 smeds219 is offline
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Join Date: Jun 2017
Posts: 1
5 yr Member
Default Treatment and symptoms

Hi All,

Some background: I used to check in periodically when this was Braintalk. I was diagnosed about with MG about 20 years ago via labwork when I was 14. I had a droopy left eye and fatigue. I had a thymectomy at 15 after an emg confirmed MG was generalized. I have been extremely lucky, I have never needed to take medication for MG and would take it easy or get extra rest when I was having symptoms.

Now: 3 weeks ago I realized I was suffering from double vision. It is not constant, have it in both eyes, and I can strain past it (if that makes sense)...which I think was causing headaches. It is usually just involvin? text, especially Excel. I did notice I was carrying a mug with 2 rims and a few other similar instances. Sometimes it just seems like everything is extra blurry vs. double. Does this sound like double vision from MG?

I have been to my GP, and optomotrist and my meuro...
My GP did a basic neuro exam the first day I noticed the double vision and did not notice any other neuro symptoms. He thought it was perscription related (note... reading glasses did not help)

The optomotrist refused to check my perscription and said that "structurally the eyes were fine"... I got the feeling that since I have an MG diagnosis she would infer it was related and not reccomend anything else.

My neuro said she figured something was exacerbating the MG and it would be hard to figure out... she went straight to recomending IVIG. She sent me for labs and an MRI (still waiting on results).


My life is the least stressfull it has been in nearly 5 years. I have been focused on my health... it seems odd that I would have a new symptom after all this time... especially since life is considerably easier.

I should probably mention that I have been trying to get pregnant.. in case that is why she jumped right to IVIG. Also, I am going for a second opinion, but I would really appreciate any insight you all might have!

So in summary I guess my questions are:

1. Does that sound like MG double vision?
2. Has anyone had a similar experience with a new MG symptom 20+ years after a diagnosis?
3. Does IVIG seem like the right move? Anything I should be aware of going into it?

Thank you!
Smeds



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Old 06-14-2017, 11:00 PM #2
AnnieB3 AnnieB3 is offline
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AnnieB3 AnnieB3 is offline
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Hi, Smeds, welcome back!

MG DV is called binocular double vision. If you close one eye, the DV goes away. Try that and see if things improve!

A regular ophthalmologist is out of their depth with MG. A neuro-ophthalmologist is the one who can do certain tests to confirm the ocular MG is back. They can verify the DV as well.

When was the last time you had some basic testing done (thyroid, vitamin B12 & D, ECG, blood pressure, metabolic panel)? I agree with your neuro that something might be exacerbating your MG, but that isn't as hard as it seems! Sounds like your GP doesn't want to work too hard! Many MGers have other disease states. A few simple blood tests can be revealing!

Are you on any drugs? Care to share what they are? Some drugs do exacerbate MG, as can the summer heat. I don't know what country you live in, but seasons may not be the same there as here.

Hormonal changes can also affect MG. So, yes, after years of being symptom-free, you can have a rebound of symptoms. Sorry!

Have you had IVIG before? If so, did you do well with it? What about Mestinon?

Some research may be needed on the part of your PCP. If that doctor can't be bothered, then get a 2nd opinion. Many of us have other medical issues along with MG. They should be checking those very common issues (above) out.

I hope there is someone who has had a similar experience that will speak up. There's nothing like having someone to talk to who has gone through the same thing!

Annie
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