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.


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?

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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.

Hi Alice,
I'm so sorry your husband has to go and see a neuro. Many doc's will do the ice test. Basically it can point them in a general direction. Kind of like when neruos will do the abc, or counting test to check how your lungs are doing. (hold you breath, and see how far you can count, or say your abc's) In all my years of having MG...(actual diagnosis was in 2004, it took one year of testing, but all my doctors were convinced it was MG right away, it was me who didn't want to believe it, so it took a while to convince me. I actually had problems several years before, but thought it was due to a back injury I had.)I've only had one eye droop, once. So it's back to we're all different in how it affects us.
My health insurance did Not change.
MG is considered a disability when it interferes with your daily living.
I've had a few times, when I've had No warning, and down I went. But for the most part, I can feel my body crashing.
My first appointment with my neuro, was a very confusing time. It was then that I had first heard the word Myasthenia Gravis. One thing I wish I understood, is what tests are to be expected. And those are EMG, Blood Labs,SFEMG, MRI, CAT Scans, and I also had a Tensilon. Which was the final thing that diagnosed me. I had My neuro, the hospital chief of Neurology, two other neuros, and several doctors who wanted to witness it, and all agreed it was positive . It was a very emotional feeling.
I've been really blessed to have been surrounded by some top of the line Neuros who really know their stuff. They just hired a new MG specialist.

Its so important to have a good Neuro, One that is very knowledgable in Myasthenia Gravis. Every time you think of a question write it down.

Hope this has helped some.
Best of wishes
Love Lizzie