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?

And another -

How urgent was thymectomy presented to you? Was it presented as a suggestion or a requirement? How soon after your thymectomy did you feel well enough to travel?

Hi Alice.
Keeping in mind that MG is different for each person, I'll answer these based on my experience.

1 - I had my life insurance in place prior to my dx, but I'm sure if applying for new insurance the rates would be escalated since I could no longer be considered a "healthy" individual. My health insurance is through my employer at this time, so the rate is not affected for me. Again, my presumption is that the rate would be higher on a personal policy.
What is your situation? Self employed, retired or...?

2 - By disability, I presume you mean in SS terms. I know people who applied for and got disability because their double vision happened so often and severely enough that they couldn't drive or work consistently.
Some mg'ers disease course takes the worst case scenario, and they are not at all functional (luckily with advances in treatment this isn't the norm). I have had MG for at least 14 years, and except for 3 major exacerbations, I have remained functional enough to work full time. I do have something besides MG as well, and I believe it is my major problem. The MG I have been able to get under control relatively quickly when it flares. The drugs and all help, but I truely feel that the most important piece of treatment is to learn to recognize your husbands triggers, warnings and limits which vary for all of us. He must pay very close attention to determine what his limits wil be, and then learn to work within them.

3 - There are warning signs, the problem is learning to recognize your husbands, since again we are all different. For me, I notice that I tend to want to go to bed earlier and earlier, it gets progressively harder for me to get up in the morning, I'm not as particular about makeup and hair, then if I didn't pay attention to those, my upper back will hurt and I'll have little episodes of weakness where I have to sit for a few minutes. Actually, my husband and coworkers are better at noticing my signs. They mention when I'm not picking my feet up, my walk slows (I normally walk with long strides and FAST), and can hear it in my voice.Those are some of my signs when I'm just pushing too hard.

Excessive activity has a cumulative affect. You may feel great and be able to do a lot today, tomorrow not as great and able to do a little less, etc. until eventually it all gangs up on you and you are completely down for several days. This is why we say learning to manage the disease is most important. If your hubby has a day where he feels strong, his inclination may be to get as much done as possible while he can. It's
best to NOT try this, but do maybe 1/3 as much as he'd like, and save strength for later. By speading it out, you stay functional on a more consistent basis.

Infections and physical trauma can bring on symptoms much faster. Especially sinus or lung infections. Be sure to get to the doctor right away at the first sign of infection.

4 - I wish I would have had a good discussion with the neuro right up front with specific guidelines for activity limits given my condition at the time - ie., how far can I walk (when I did have this discussion I found she recommended no more that 25 feet round trip for me at that time, and that was after treatments had started and I was getting stronger!).
I have found that most of us are overacheiver types who used to do way more than the normal person. For this reason, it's hard for us to grasp just how much we have to cut back to get/maintain our strength.

5 - Your added question. For me with generalized MG, weak enough to be hospitalized when I got my dx, at at the age of 47 at the time, my neuro kind of put thymectomy as a must. She did give me the option, but in a way that I would've nuts to not have it done. There are factors that neuros take into consideration on the thymectomy - form of MG, if there is a thymoma or any residual thymus tissue on the CT (has your hubby had this yet? If not I'm sure the neuro with want one), age at the time of dx.
Keep us posted as to what your neuro asks for test wise, and advises OK?

Hope this helps a little. I'll send you a PM re: the neuros if you don't mind.:grouphug:


Did your diagnosis impact your health and life insurance rates? By how much?

1. At what point, if ever, is MG considered a disability?
   
2. 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?
   
3. What's the question or questions that you wish you'd remembered to ask your neurologist on your first appointment?

[/quote]

We're in kind of an odd situation with our health insurance. My husband works full-time for a school district. The cost of insuring our family through the district would be somewhere around $1500 a month - or at least, that's what it was two years ago when we bailed on the district's health plan. It was $600 a month five years ago for the same plan, so you can get an idea of the rate of increase.

We've had a small business doing consulting on the side for a number of years. Two years ago we started buying a small group health plan for myself and my husband and our kids to get out of the district's insurance - it's not a great plan, but it costs less than half as much as buying insurance through the district. Even with my husband having to have an MRI and surgery last year for something acute and unrelated, we still didn't end up exceeding the cost of the district's insurance. We still buy life insurance through the district, as that is much cheaper than going through the business.

I'm not sure how our insurance rate is going to be affected by his diagnosis, or how much it will go up. My premiums actually went down last year, and my husband's would have gone down too if he hadn't turned 40. Any changes to both the district's and our personal plans have to be in place by May 30, or we have to wait another year.

We're calling our GP today to see if we can get the blood work and the chest X-ray/CT expedited, before my hubby's neuro appointment on the 30th. I'm not sure which they will want to do since they can't use iodine contrast on my husband - he blows up like a balloon. I know that doing the tests might trigger something with our health insurance, but I think it's better to know up-front how bad or good the situation is so we can plan.

Oh, and kind of a funny warning to us has already happened. The optometrist we saw last week told my husband that quinine (tonic water) would help with the eye twitch he's had for a while (probably due to stress). Quinine apparently will exacerbate MG symptoms and is to be avoided, and she probably had an idea that my husband possibly had MG when she advised this because she had already done the ice pack test. I'm getting the feeling we're going to have to really stay on top of what medications are and aren't safe, because I'm sure we can't expect the average doc to keep those in their heads.