Ocular MG becoming generalized?
 

Hi,

This is my first post. I was diagnosed with a mild case of MG this past May; my eyelid suddenly started drooping last September and I have double vision that gets worse at night. My initial blood test was negative but my EMG was abnormal (though only slightly so). I was sent for a chest MRI which showed a possible thymoma but met with a specialist at UIC who referred me for a PET scan. Based on that and the fact that my MUSK anti-body test was negative, he thinks its just thymic hyperplasia and we can just wait and see what happens.

Today I had some problems with my arms and I'm not sure if it's MG spreading to my other muscles or a just a freak thing. I was carrying my groceries home from the store (something I do every week) and had to stop and set the bags down a few times because I felt like I would drop them. It's 2 hours later and my arms feel like I went through an intense workout - my forearms and shoulders feel tight and it's hard to raise my arms. Do you think this is MG related or am I out of shape :)?

I'm just worried about developing generalized MG and it's hard to know when I should be concerned about something. Any help is appreciated!

Klynng, Welcome. People here are very supportive, it's a good place to be.

It sounds to me like you are going generalized. It might be wise to put a call into your neurologist.

If your muscles get weaker when you do something and then get relatively better with rest, chances are it's the MG. Deconditioning is a fairly constant condition. MG fluctuates and is "fatigable" with activity. Are you short of breath at all?

You need to take it easy, in case your disease is worsening right now. And, like I said, call your doctor. Are you on Mestinon?

MG can be managed but it's nothing to mess with. You do not want to "push" too hard and get worse, especially if you aren't on any meds. If you continue to get worse, a trip to the ER is not unheard of. If you can't lift your limbs, can't swallow or are very short of breath, that's an emergency with MG. Always dial 911.

I'm not trying to scare you! But if your MG is getting worse, you have to rest up and get more help. I hope you'll be okay.

Annie

Mine started as Ocular and my first bloodwork was neg. I saw a neuro-optom and he said I had MG and my blood test would be positive soon. He was 100% correct. Mine started as double vision and droopy right eye. Quickly turned to generalized.
Mike
70yrs old, on Mestinon, Imuran and had 4 courses of IVIG.

Thanks for the reply! I am on mestinon but haven't started on steroids yet. My arms are feeling much better today though my double vision is worse than usual. I'll contact my neurologist.

Wow, that's really interesting - how long did it take for your symptoms to progress and your blood tests to become positive?

Thanks for the reply; it's really helpful to talk to people who understand.

My symptoms progressed pretty quickly. I would guess within 3 months I was generalized and got my first positive blood panel. In my case the Prednisone caused more problems than helped. My double vision continued for 11 months. I went 11 months without driving. I am now on my 9th month of Imuran and have had 4 series of IVIG treatments. On the 4th series of IVIG my vision has improved to about 80% and I'm able to drive. I still have a little double vision looking down and to my far left. My neuro has stopped the IVIG treatments to see if the Imuran is kicking in or the IVIG gave me the improvement. As for the strength or energy level nothing has helped that. My current problem is weight loss. I am down to 145 pounds. My gastro wants me to have my gall bladder removed but I am a little afraid to be put under.
Mike

Just make sure you inform the Doctors and anesthesiologist that you have mg. I recently had a shunt put in my ear. I informed them that I have mg so they did not use muscle relaxers during the surgery. After that I just slept for a day or two which I would think would be normal anyway after surgery. Which sleep is good for mg lol. If anything talk to your neuro and see what they say and if they have concerns about you having your gall bladder removed. I hope everything works out.

There are 2 reasons I'm nervous. First our local hospital is a nightmare. They have a horrible record. When I was in there about 6 months ago they tried to give me 3 60mg mestinon pills instead of the 180mg time release. I did not talk to one person on the staff in 5 days that knew a thing about MG.

Second reason is my mom was admitted to hosp for routine surgery and about 3 days prior we discovered she had MG. They did the procedure anyway. Well long story short she died. Coudn't breathe on her own.
Mike

Mike,
Have the surgery when you are ready....at the hospital of your choice! Depending on your insurance, you just have to find the surgeon you like who practices at a hospital you like. There is no reason for you to have to use your local hospital, is there?

You are correct I have several hospitals to choose from. I'm guilty of judging the others by the one I know. I just need to get my courage up. Insurance is not a problem.
Mike