[cait91]

Hello everyone! It's so amazing to see how many people other than me have this disease. At times i have felt like i was the ONLY one in the world going through this.. I was 19 (now 20) when i first started getting my symptoms of my MG. It started out with my tongue getting extremely weak.. at times i wouldn't even be able to talk, you couldn't understand a thing i was saying, i was also getting double vision (but i thought i just was in need of glasses). I also was extremely tired ALL the time and my social life, as a young adult, was quickly diminishing. Before MG i was extremely social and as you could imagine going through the symptoms like not being able to smile correctly or make a laughing face(due to weak facial muscles), or converse in conversations with my friends was very frustrating for me. I became depressed and thought I was going to have these awful symptoms for forever. Just recently my neurologist came to the realization that MG is what i had. I had gone to every doctor you could think of and every medicine possible and nothing was working. Finally i was prescribed to mestinon and within an hour my big smile was back, i was talking normal and clearly and i had energy again! it was like a miracle drug... but i have noticed that after 3 hours or so when it starts to wear off i can feel my tongue and face getting weak, that's how i know to take another pill at the 4th hour. I have gone through 6 months of the torture of not knowing what was wrong with me and now we finally know. Im not thrilled that I have an autoimmune disease but i am relieved to finally have answers and treatment options. I have my first IVIg treatment this coming friday and im nervous but excited to see the results of what could be. I mainly just posting this blog to get what i have been building up inside of me for the past 6 months and maybe this will help some of you know that you're also not alone and others are going through the same pain in the *** symptoms as you!

[suev]

Welcome Cait!

I'm so glad you finally got a dx (and you're lucky - many, many here went far longer than 6 months) and that Mestinon works so well for you!!

I haven't had IVIG - but everyone here who has says to be sure to drink tons of water before, during, and after to avoid headaches. I hope it works wonders for you.

By the way, did you have a CT scan to check your thymus? If not, it might be something to discuss with your doctor.

[pingpongman]

Good luck with your first IVIG. It took me 2 treatments to see any results. When I say treatment I mean a series of 5 infusions. So it took me 10 infusions to see a positive result. I have been getting infusions about every 2 months. Keep in mind each of us are different and what works for one might not work for another. Just keep working with your Neuro and he will find the right "witches brew" for you.
Mike

[Smokey56]

Welcome cait and good luck with your health! Sometimes it is a relief to find out what you are dealing with for sure and venting has its place also!

There will be good days ahead - be patient!

[dewcole]

welcome cait...
I am happy that you got your dx in such a short time. I went for 6 years before I was properly dx. As I have learned...from just being dx approx 1 month ago...that it takes a little bit of fiddling around with your meds to get the right dose. But like you...the greatest thing is to put a name to the monster stealing your life. Now with knowledge....you can move forward and be that happy young person you should be. Never stop learning. Glad you found all us other MG'ers.

[cait91]

suev-- my neurologist has scheduled a CT for my thymus when he diagnosed me last week with having MG. So i guess after my week of IVIg treatments i'll then go in for my CT!

[suev]

Excellent...and be sure to tell the CT tech you have MG.

[cait91]

I just wanted to keep people posted, so far I have gone though 4 days of IVIg.. But on the 3rd day i got a throbbing headache, throwing up, back pain, shivers, and temperature (100.9). I was taken to the ER because that's what the on-call neurologist suggested to my mom at 1 am in the morning. So i ended up in the hospital around 6 am and was seen by the ER doctor.. who wasn't very knowledgeable about MG but knew that it wasn't something to take lightly. My neurologist came to the ER to see me about 8 hours after being there, he said i had aseptic meningitis-- this is a reaction i got from the IVIg. I was then discharged and sent home. I am now given benedryl and another medication before they start my IVIg medication to help with the headache and nausea. My last day of treatment is tomorrow (christmas eve) im thrilled to be done with it but also realize that this probably wont be the last time i go through this. I just hope it gets better from here!

Happy Holiday!
Cait

[pingpongman]

You gotta hang in there with your Neuro. It will take him time to come up with the right "witches brew". It will get better!
Mike