question about the ice pack test
 

My husband went to the doctor Tuesday for some inflammation around his eye, and the doc (not his usual PCP) expressed concern about his droopy eyelid and told him to see an opthamologist immediately. We were able to get in with an opthamologist that day, but found a group of opthamologists/optometrists that assured us that if we needed an opthamologist they could drag one in from down the hall. The optometrist did the ice pack test but didn't say anything about her findings. The next day she called us and said she wanted us to see the plastics guy in their group who specializes in eyelids. He did the ice pack test again, taking before and after pictures, and there was noticeable improvement. He mentioned myasthenia gravis and is referring us to a neuro, who can't get us in until April 30.

Is there anything besides myasthenia gravis that would cause a positive reaction to the ice pack test? We're trying to get an idea of what we're in for, waiting for a diagnosis isn't fun.

Hi Alice!
 

Hi, Alice. I know, waiting is the hardest thing when it comes to doctoring!

Ice can improve other things like inflammation and can deaden nerves. Eyelids droop in polymyositis, multiple sclerosis, cranial nerve palsies, etc. It's not a perfect test for figuring out if someone has MG. Are both of his eyelids drooping? Did they do the upward gaze test where they try to fatigue/weaken the eyelids more?

Erin had some good questions about what other symptoms he may be having that could better explain what is going on. Is your husband short of breath? Does he have a hard time walking up stairs? MG is all about weakness upon exertion or repetitive activity.

While you are waiting to see the neuro, make sure your husband doesn't do too much just in case he has MG. Stay out of the heat, since that makes MG much worse. And if he gets worse and can't swallow, speak or breathe well, then you guys need to go to the ER. Don't wait for that neuro appt. if things get worse!!!!

I hope you get answers soon.

Annie

He's had quite a bit of fatigue for a while, but that may be stress-related - he works more than he should. He's had a number of small, probably unrelated symptoms/issues for years, but he's gotten so used to being told it's in his head or that there's just no good explanation for the aches/pains/not feeling right that I doubt he knows what is connected to what. He pretty much blows off anything medical now until it gets to the point where it can't be ignored.

We're hoping at this point it's just ocular and stays that way - I consider the 16-20% number I've been seeing tossed around for ocular MG not progressing to generalized to be pretty promising. He doesn't think he's noticed any muscle weakness. He's had the eyelid droop for six months - his PCP said she didn't think it was anything when he went in for something else and mentioned it. So we're not seeing a rapid decline, I don't think.

Hi Annie!
 

Fortunately, we don't have to worry about heat right now - we're in Denver, we have snow on the ground. I told him the upside was, if he had a positive diagnosis, it means he never has to go back to Oklahoma again because he can claim it will aggravate his medical condition.

It's just one eyelid.

Hi Alice, and welcome to you and your husband from another Denverite!

Just a word or caution about the heat. Although we have snow this weekend, I am currently in a bout with my MG and the 70's we had the end of this week were too high for me! I sat out for about 15 minutes and paid for it for the rest of the day - probably would've been ok if I wasn't in direct sun but I was trying to get my Vit D.

What neuro will your husband be seeing on the 30th?

Hope to hear from you soon!

He'll be seeing Kelts, who was recommended by the plastics opthamologist, but if he ends up with an MG diagnosis I think we're going to try to get a referral to Ringel, unless someone recommends another MG guy in the area. From what I've been able to find, Ringel seems to be the area expert, but we're open to suggestions. This isn't something we've been researching long.

Hi Alice and welcome,

I do hope if it is mg it is just ocular, I have met one person with it, among the few I have met,and he couldnt believe all the symptoms we all had, and we couln't believe all the symptoms he didn't have.

Hope all goes well at the neuro, don't be afraid to ask as many questions as You want!!

take care
Kate

I have some practical questions, if anyone has the answers to them I'd appreciate the response.

1. Did your diagnosis impact your health and life insurance rates? By how much?
   
2. At what point, if ever, is MG considered a disability?
   
3. Do you generally have some warning that you're going downhill, or are you more in a situation where you find yourself having to cancel plans due to an exacerbation or find yourself reluctant to make plans because, although you feel fine today, you might not feel fine tomorrow or next week?
   
4. What's the question or questions that you wish you'd remembered to ask your neurologist on your first appointment?