[simplelife15]

Hi all,

I've been lurking on the board since I was diagnosed last May, but I'm in a bad place the last couple of weeks and, well...just need a little support from those who know...

Short version of diagnosis: 10/2012 gave birth to my second child. In the last stages of pregnancy felt incredibly fatigued and short of breath. Everyone chalked it up to parenting a toddler while pregnant and working. Fast forward 4 months postpartum, everyone is still dismissing my sx's as mothering a toddler and newborn while working. I knew better and finally one day in the midst of a breathing crisis so severe I took my kids to a neighbors because I was worried about my ability to care for them, I called my PCP and said "I'm coming in now wheeter or not you have an appointment available". They saw me, sent me to the ER and made a referral to an endocrinologist to rule out hormonal issues. The endo looked at my pulmonary hx (from over a decade ago...spontaneous pneumo's x 3) and said that a pulmonary work-up was in order while at the same time he would look at whatever he could rule out. Luckily the pulmonologist was good at her job and noticed the MG findings on the pulmonary function tests right away and sent me to my neurologist.

Negative ECG, double sero-negative for antibodies, BUT significant positive response to Mestinon and he diagnosed MG based on that, and the repeat pulmonary function tests that showed significant improvement with Mestinon on board.

Still to this day my primary symptoms are respiratory...chronic SOB, generalized fatigue and weakness, shaky vision (which is resolved completely with the Mestinon), and occasional, significant arm fatigue (mostly noticed when driving). (On that note: anyone else experience one sided muscle fatigue? Definitely more prominent in my left arm...don't understand that, except maybe because that's the arm I use to carry my 21 m/o?) My menstrual cycle just started again a few months ago. Notice flare ups around ovulation and the 4-5 days pre-menstrual.

Current meds: Mestinon - rx written up to 9-60 mg tablets daily (no more than 540mg/day). Written that way so I can take my normal dose (120 mg/4x day) with room for a little extra if I need it.

Prednisone- 5 mg/4x week

Was on Mestinon Timespan overnight, but can't afford the $400/month it was costing with our HD health plan.

So, now why I'm writing:

Roughly two weeks ago starting feeling a flare-up coming on, which usually means SOB is feeling worse. Other sx's are always manageable... annoying, but manageable. SOB is always the worst part.

This time has been much worse than other flare-ups though. It got to the point last weekend where I increased my Mestinon to 180 mg every 3-4 hours, and would start feeling SOB during the last hour. Ended up taking over 1200mg of Mestinon last Sunday. I can usually tell if I have upped it too much because my eyes get twitchy and my stomach will get upset. I had NO side effects with the 1200 mg. I called my neurologist first thing Monday morning and as I told him, I was getting relief at the higher doses, but it wasn't lasting more than a couple of hours. He was not happy to hear about the huge increase and said he would put in orders to get me started with IVIG.

I also went to my PCP and because of the noticeable pattern with my menstrual cycle we agreed to do a trial of birth control to try and get my hormones on a consistent even level in an attempt to limit/eliminate the flare-ups related to fluctuations.

I'm also scheduled for thymectomy on 8/13.

Neuro upped my prednisone to 10mg/4 x week.

Waiting for insurance to approve orders for IVIG.

Insanely frustrated, and more than anything scared (and now I'm crying...).

I have two little ones (5 and 21 mos) and am more than anything scared that we aren't going to be able to get this under control. It scares me because of how quickly in a year my respiratory symptoms have gotten so much worse, and how intense this flare-up over the last couple of weeks has been. It's not as bad as last Sunday, but I'm still in the 720-800mg/day range on Mestinon, with relief not lasting more than 3 hours.

I've read so many stories on this board about how hard others have had to fight for a diagnosis and am incredibly thankful for how this was handled in the beginning. But now I'm really hating how hard it seems to be to get it under control...and it's really starting to scare me.

Feeling a little discouraged I guess.

If anyone has any advice it's always appreciated. (Been reading the IVIG posts...will ask for a slower infusion, drink lots, and maybe have some Tylenol on board going in...anything else?)

Long story long...thanks for reading.

[suev]

First of all....Welcome!!

I am so sorry this is happening to you!! The very good news is you have a dx and medical providers that are on your side. From your post, I can tell that in addition to two babies, a job, a household, the stress level you are carrying is unimaginable.

So, you have IVIG help coming soon (hopefully) and a thymectomy in about 3 weeks. You must therefore have arranged care taking for the babies. Whatever you have arranged, get that help started immediately! You need to do as much of NOTHING as possible RIGHT NOW! If you can get your docs to approve a medical leave in advance of your surgery...do it.

No one can tell you how long this will go on for or how much better or worse things will get. But what you can know for absolute fact is that you have to let go and let others do for you and your family for a while. There is no magic - your body needs time, rest, medical attention....and more time to heal.

Please be smart about this and focus on YOU first. Farm out every chore of daily activity that you possibly can (from grocery shopping to meal prep to house cleaning to child care), try for a medical leave, and force yourself to do NOTHING (which for type A MG'ers usually means we only do 1.5 times what non-MG'ers do while we're taking good care of ourselves!!!)

Please use this board frequently for support. There are many here who have gone down this road you are travelling on. Take good care, know that you can get through this, and accept that your mind can not ever control MG. We can only try to outsmart it within the confines of its rules!!

[southblues]

Respiratory symptoms are also my worst problem. I am doing better now that I am on cellcept and mestinon, but the problem is still there. I also have ptosis, fatigue, I lose my voice, and I have leg weakness to the point that I fall without medication. The cellcept has done me a world of good.

I hope you feel better soon. Take it easy. Your body is going to force you to whether you want to or not, so just go ahead and get some rest.

[limpy]

The only thing I can suggest is to split the mestinon and take it more often. I had the problem you are having with the dose not lasting long enough. By splitting and taking twice as often, I stay in a more even keel without all the ups and downs.
Hope you feel better soon and my hat is off to you for being able to work and take care of kids.

[bny806]

Wow, your story sounds so similar to mine - with the post partum part of it and all (I had a 16 month old when I had my son.. ALmost got intubated during the c section, and got slurred speech, resp issues and weak all over after the epidural.. recovered a bit.. but then just continued to go down hill .. Couldn't hold my kids, couldn't hold a fork, a pencil or anything. I couldn't bathe them, or be alone with them due to my weakness... It finally hit my respiratory muscles hard and ended up in the hospital getting IVIG, which SAVED Me). My diagnoses is still a mystery, though LEMS is highest on the list. We've been at this for 3.5 years!

I hope that they get IVIG approved soon, and you can get back to being able to do everything you want with your babies.. It's hard enough being a Mom to two little ones, much less, working and being sick too!! Oh, and I HATED the whole "aww, your a stressed out Mom" look that Dr's would give... THe last thing I had time to do was be wasting time in their office if they weren't going to help!

good luck, and welcome!