[Newbie87]

So i met with my neurologist on weds and am just looking for some advise from people who are in the same boat i am!? lol. I have come to really not like it when people say "you look so good today"!!! and feel like i can't keep it in anymore. So a lil of a overview, started testing in may after severe weakness, fatigue, you name mg system i had it, my eyes being the exception. i had double vision on and off but that was it. went in for testing. was dx with seronegative Mg and was already on prednisone and mestinon...a few weeks ago started getting shortness of breath, chest pain. worsening with exerction, (all the while i work as a medical assistant for 3 drs.) and i am working full time. So needless to stay i ended up in the hopsital last tues in a going into a myasthenia crisis (thankfully not needing any breathing support) but very close to it. So they started me on 5 day ivig treatment! and that did wonders! it was amazing how much i felt better! almost like my 22 yr old self, and then i went to back to work on monday and here is where i need some advice. feeling good monday at work...could tell that i def was better then before (having the ivig) but being off of work and back on it was a totally shock to my body. By tues afternoon at work i was completely exhausted. coould barely walk, just one of those super bad days. slept for 12 hours and got up for work today and am just not back to have i was pre ivig cuz i still am feeling better but i am still getting so tired and so weak that it is really getting not only old but affecting my work consider i was out for 5 days hoping i would come back and be all better (fat chance i know but one can dream) So what do i do now? neuro and i decided that my treatment will def be ivig and pred and mestinon but he said that my next ivig will not be for 3 to 4 more weeks! What am i suppose to do now!? I am in total denial that i need to change my job but am guessing that this is something i am going to have to think about. I just got this job 3 months ago....so bad timing and i love it, neuro said that he thinks i need to cut back to part time, that i am just pushing myself and that is going to keep me in this vicous cycle of not getting better. And to top it off... i really can't afford to work just part time........ughhh i feel like my life has been turned upside down and inside out and is thrown all over the place, and i know that i know ivig works for me i wish i could get it done at a rate that would keep me able to keep my job (not sure how realistic this is).....


anybody have any thoughts? sorry this is so long...

[suev]

Hi Newbie!

Sounds like you're having a tough time of it. I'm really sorry you're going through this.

There are a number of things to consider about how to handle work. One, of course, is health insurance...and whether you would be eligible for it as a part timer. IVIG is not inexpensive.

Not knowing what your benefits at work are - I would investigate if you could be covered by short term disability...and what the financial implications to you would be. Others here know far more about Social Security Disability - I thought I had read somewhere that in some cases it is possible to go on SSD for an interim period until able to return to a full work schedule (but I could be way off base here).

Trying to go from full time to part time can be tricky. While your neuro may be willing to give you a restricted work order - the company may not have to honor it if they don't currently have part timers on staff. All this is can be so very dependent on the people involved in the decison making in the workplace. How much leeway does company policy and the actual job duties have.

None of this is very helpful for you, I know. It's a tough situation to be in.
Good luck and please keep us posted on how things go.
Sue

[Juanitad]

I found that spreading out my IVIG works best for me. Instead of getting 5 days once a month, I get 1 day every week. Same total IVIG, but spread out over the month. Check with your neuro and see if this would be worth trying. 1 day a week? 2 days every 2 weeks? Some other combination?

Good luck!

[scrubbs]

I have been getting 2 IGIV's monthly for 18 months. I have never gotten any remarkable improvement like you did from the infusions.
I am better now but do not know what to attribute it to. IGIV's, cellcept or mestinon all while taking reducing ammounts of prednisone.
With the reaction you had from the infusions I would definetly try to do what
Juanitad suggested
Good luck;
Tony

[Newbie87]

i asked my neuro about doing ivig more frequently and maybe less like suggested and im not sure if it just because he only has a few cases of Mg patients and they seem to be doing really well. But he told me that it is best to wait 3 to 4 weeks between infusions. and in his words " i don't have any patients that need one monthly" so i am wondering if maybe i need to find a new neuro who might be more willing to be more aggresive seens how i am so young, it seems to be one of the only things to work really well for me...and i can't afford to cut back on work ( luckly my husband is military so the infusions and home health care are covered)...