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