What do you all do about work?
 

I'm having a horrible time with work. Whenever I look at text its double, so I can't code anything or proofread documents. I'm also having attacks where I can't open my eyes. I've tried an eye patch, but my other eye gets blurry and shuts after a few minutes.

My doctor wants to correlate IVIg with the thymectomy, but I'm afraid this will drag on. If I was a permanent employee, I would tell them what's going on, but I'm afraid now, they will say they don't want to bring me on. Any advice is appreciated.

Jeff

Jeff, When a young resident discovered I also was severely vit D deficient and that was treated I became strong enough for almost a year to do some office work. I did take the job thru a retain program thru AARP & the govermt as I was just barely old enough. But seeing was and is a problem for me still.

What has helped with my vision is acupuncture treatments every 3 months with an MD trained in it. And more recently since my eyes are not heavily MG involved the prostigmin. I dont know why but my eyes and breathing respond better to prostigmin (neostigmine is same) than to mestinon.

Just a note about prostigmin. There was a discussion here started by me and another (sorry dont remember) on the ability to get prostigmin. I did get a call from the FDA. You can get it in the US. The thing is that there are drugs that are very old and still in use like armour thyroid drug (their example) that are still able to be purshased but cant get the FDA approval as that takes all the studies and as I know what drug company is gonna study an old drug when so much money can be made by drug for diseases that have more patients will make them more money. So it can be sold in US and the FDA know about this drug and many others that exist in this status and they would not stop it from being sold in the US unless there was a valid case for harm.
Annie59

Hi Jeff!

I can understand your concern about work. As a temp, they have no long term obligation to you.

Only you can judge the landscape and determine how to handle this. Each company and their policies can be so different.

I hope all goes wellfor you. Please let us know how things work out.

Sue

Jeff, having just gave up my job, I totally understand what you're feeling. I can't really help you much as I don't have your symptoms, but I agree with what Annie59 said about acupuncture. While I was in China, I met so many who had weird diseases and a lot of it could b dealt using acupuncture.... This old guy I met, not sure what he had but one side of his face drooped badly, inc eyes n lips, and he tried acupuncture for 6 mths, and now his face is nearly normal. :)

My doctor mentioned acupuncture in terms of pain relief. I had no idea it could be used for double vision. I'll have to look into it. Thanks.

Jeff

Things that help
 

I understand what you are going through. It is difficult to work full time with MG.

I have found that there are many things that help my MG besides the Mestinon, and I have to do all of them in order to continue working. I have only been able to work part time. Here are some things that I can tell help me.

-For my eyes, I put a cool cloth on them when they have problems.

-Taking specific vitamins: Methyl B12, C, E, Magnesium (probably others as well, but I can tell a difference while taking these)

-Rest whenever possible.

-Drink plenty water

-Eating vegetables, mostly dark green ones.

-Adjusting my Mestinon dose as needed (my eyes are especially sensitive to taking either not enough or too much Mestinon)

-Avoid stress (as much as possible)

-Avoid chemical exposures (pesticides, perfumes, household cleaners, etc)

-Getting a small amount of sunshine every day (Vit D)

I wish you the best. I am also struggling with work.

Take care.

Hi Jeff, Just to clarify the blurred vision I have from the MG can be mild to severe. This is what the acupuncture has helped. Now I am not saying that it wouldnt help the double vision at all tho I wanted to clarify that I am not saying it would make it all better. I havent asked me him try to make the specific double vision better. But when mine had gotten alot worse it turned out I had myositis in my eyes. When that was diagnosed and I went thru recovery for that the degree of double did improve. I wonder how many of us might have myositis an dont know it? At a certain point it was causing pain in my foreheaD above left eye as they was the worst. It felt like a headache.

Annie59

My approach
 

Hi Jeff - I am experiencing the same thing right now. I've had MG for about a year and a half and it's been an adjustment. I am a contractor Technical Writer right now...and 40 hrs a week is soon to become something in my history. I've tried, but I think we have to listen to our bodies. If you can't do it, then you need to find an alternative. Perhaps you can find work that you can do from home, which would cause less daily stress (i.e. getting ready, traffic, etc.). I worked from home the first year and it was very helpful because when ever I became tired I could take a nap. It allows you to use your time differently. I'm currently looking to get on disability and work only part time. I think this maybe the option for me at this time. Also, one thing that I'm trying to do, and I hope you can to, is look at other options. What are your natural talents--what are things you enjoy that you can do??? That is probably the direction you should begin to shift your career. I love to paint pictures. It's low impact and I can do it inside or outside, when I am feeling good it works for me. Of course if I'm having a bad day, even the paint brush is too heavy. Maybe you can start an online business.

Also, another thing that I do and I've noticed dramatic improvements in my overall condition is I eat a gluten free and sugar free diet. It doesn't stop my weakness. I still have good and bad days, but it does reduce my flare ups and keeps me from getting run down fast. Most importantly I get a lot of rest and don't push myself. For example, the first muscle for me that usually gets weak is my eyelids. As soon as I feel my eyelids get heavy I stop what I am doing and rest. A cold compress helps, but seems to provide me only temporary relief...and I'm a wuss, I don't like to be cold, so I don't usually do that. I go to bed between 830 and 930 every night, no matter what. I made a routine for myself. You have to kind of play with your routine to find out what your body needs and then listen to it.

I know money is important, so we need to work. At the same time I know that I will most likely spend as much as I make...so it may be an adjustment, but in my situation I'm coming to the reality that I need to live on less until I can find an alternative solution to the standard 40 hr week. I see this as a temporary solution and believe when one door closes another one opens, so I am looking to make the opportunity that fits my needs the best.

I hope this helps, if not...well...thanks for listening.

:hug:

p.s.
 

P.S. I read that you haven't told your employer. I can understand that as well. However, I took the risk and told my immediate supervisors with a simple emails, just kind of an FYI, and received positive feedback. When I get weak, they offer to drive me home and everything. I decided to take the risk because technically it's illegal for a business to drop you because of a disability and even if you haven't registered with the state as disabled, you have a disability. So, it may be worth sharing...