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Old 08-01-2009, 06:31 AM #21
whirlwind123 whirlwind123 is offline
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Location: ohio
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Default Hi Kathy

My mg started like yours but it took about 8 months for someone to diagnose because I had the bluriness and double vision but no drooping. They did the blood work and I was positive, I am waiting now for a appointment with the MG specialist, I went to one local Neuro, and he has first put me on mestinon which I had some bad effects to and then he changed me to the prednisone., which really didn't help my vision and the side effects outweighed the symptoms. How are you doing on the prednisone? When I go back to specialist I have been waiting 4 months for., I am going to ask him about a prescription for the brand mestinon I have been told that sometimes the generic will give people more side effects.
Glad to hear you are doing so welll, I do was hesitant to post as my symptoms compared to what everyone else is going thru is mild. I started my mg at 57 years old. This is a wonderful board., they have helped me tremendously.
Take care
Nancy
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Old 08-01-2009, 08:08 AM #22
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KathyV KathyV is offline
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Location: Cincinnati, Ohio
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KathyV KathyV is offline
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Smile Hi Nancy

Quote:
Originally Posted by whirlwind123 View Post
My mg started like yours but it took about 8 months for someone to diagnose because I had the bluriness and double vision but no drooping. They did the blood work and I was positive, I am waiting now for a appointment with the MG specialist, I went to one local Neuro, and he has first put me on mestinon which I had some bad effects to and then he changed me to the prednisone., which really didn't help my vision and the side effects outweighed the symptoms. How are you doing on the prednisone? When I go back to specialist I have been waiting 4 months for., I am going to ask him about a prescription for the brand mestinon I have been told that sometimes the generic will give people more side effects.
Glad to hear you are doing so welll, I do was hesitant to post as my symptoms compared to what everyone else is going thru is mild. I started my mg at 57 years old. This is a wonderful board., they have helped me tremendously.
Take care
Nancy
Nancy,
I can't believe the similarities between us. I'll be 57 in October and live in Ohio (Cincinnati area). What part of Ohio do you live in?

I've only been taking the Prednisone and Mestinon for 9 days now -- both are generic which saves me on the co-pays. Other than I seem to sweat more (which I never really did before), I haven't noticed any side effects. What problems did you have with the Mestinon?

I'm going to a regular neuro -- didn't realize there was a MG specialist. Have you had a CT scan to check your thymus. Mine showed abnormal with a 4cm "growth." Next appointment with the neuro is 8/19 and then I'll see what he wants to do about that.

In the meantime, I'm just about 100% with the vision and feeling fine. Hope I don't jinx myself.

Have a great weekend.

Kathy
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Old 08-01-2009, 08:49 AM #23
Ckitty60 Ckitty60 is offline
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Hi Kathy,
It's good to meet you. This is a wonderful place. Everyone is great and you will get lots of good information. I am 48 and was just diagnosed about 5 months ago so I am still learning too. I have ocular MG and general MG. It took about a year and a half for me to get a diagnosis. I am taking Mestinon during the day, Mestinon Time release at bedtime along with Imuran. My neuro did not want to start me on steroids if we could avoid. However, I do not have double vision all the time. My vision gets blurry when I have been at the computer too long. My left eyelid droops every day at some point. Both eyelids droop at times. I only get double vision when he does the upward gaze test so far. Glad you have found this place, you will really love it. Hope you have a good weekend. Take care.
ckitty
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Old 08-01-2009, 12:59 PM #24
whirlwind123 whirlwind123 is offline
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Location: ohio
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Kathy., the mestinon gave me so much extra mucous it affected my asthma terrible and all I did was cough and my chest got very congested and also the palms of my hands were hot and my lips itchy. The prednisone made me swelled terrible and then all my lymph nodes swelled. I live in Salem , ohio., close to East Liverpool , The neurologist specializes in MG, and is in youngstown ohio. Take care and keep us informed.
Nancy






Quote:
Originally Posted by KathyV View Post
Nancy,
I can't believe the similarities between us. I'll be 57 in October and live in Ohio (Cincinnati area). What part of Ohio do you live in?

I've only been taking the Prednisone and Mestinon for 9 days now -- both are generic which saves me on the co-pays. Other than I seem to sweat more (which I never really did before), I haven't noticed any side effects. What problems did you have with the Mestinon?

I'm going to a regular neuro -- didn't realize there was a MG specialist. Have you had a CT scan to check your thymus. Mine showed abnormal with a 4cm "growth." Next appointment with the neuro is 8/19 and then I'll see what he wants to do about that.

In the meantime, I'm just about 100% with the vision and feeling fine. Hope I don't jinx myself.

Have a great weekend.

Kathy
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