Hi Connie,
I understand your frustration! I have been diagnosed with MG "clinically" by my symptoms only....as all of my tests so far have been negative. I have been trying to run from the diagnosis of MG...because I haven't seen any hard nose facts that I indeed have it...but I am facing the facts now!

Neuro just this week..sent out some more blood for the MuSK antibiody...mestinon has been a big help...which apparently also indicates to the neuro that I have MG. IVIG has finally kicked in..and my headache from that ordeal is finally over...I have had a wonderful day!

I honestly thought I was going crazy..slurred speech..and blurry vision...I couldn't maintain good eye contact...my husband said that my speech was not as bad as I thought it was...my tongue felt like it is swollen..(it still does)...I started to get very anxious about talking..and I tried to avoid talking as much as I could...I felt like everyone was staring at me over this.. Doc put me on cymbalta and I has really helped me socially with this...

I have been told to try to avoid stress and take it easy....this is hard...wonder if the doc would give me some ativan for this...along with the cymbalta..(probably not )....

I hope you don't run from the facts....I am feeling much better since I have been following the doctor's orders...as well as...doing alot of research on the subject...this forum is great...with a lot of knowledgeable people here!!!! I, like you, have no resources here in my area...the support groups around here ..have apparently dried up...this forum is the best "personal" resource that I have found!!!

Stephanie

Hi Everyone,

Thank you so much for all of your encouragement and replies. Am overwhelmed by the spirit and the love all of you have here. =)

Thanks Neutro, for the link to the previous post. Have been reading up on all the earlier discussions and topics, but have not yet seen this. The strength test is definitely helpful, will get my friend to help me with that and update you all on my score!

Thanks Ras, for the website, but unfortunately I'm located in Singapore right now and have not been able to find sites like that! So am still google-ing for neurologist sites and MG associations that caters to where I am right now. Definitely Neurotalk's wonderful, just wish I have found it earlier!

Thank you so much Annie, for the link to MGFA. Just read the story of Annette on her experience in getting her MG diagnosed and it has helped a lot! (tried posting the link but I can't as have only submitted lesser than 10 posts ;P). How are you now? Is your MG flare getting better? Thanks so much for sharing even though you're in the midst of a MG flare. I'll test my eyes later when the vision starts blurring. Its morning here right now, so its just when my body seems to be in the best state for the day.

Apparently the blood test takes weeks as i think Singapore does not have the lab resources to test it. From what I read, its probably sent to Australia for evaluation. So the travelling kind of takes 10 weeks I guess. I don't think he did the test for MuSK antibody. I read that its probably the AhCR from the lab request form, the neuro didn't explain anything to me.

After reading the story though, am concerned as well cos have been feeling that there's something stuck in my throat or that something's swollen there. Have thought that its due to my lack of sleep at night (can't seem to sleep well) which causes sore throats. Am also getting occassional bouts of weakness and numbness, and its scaring me. Its just like the hands and fingers go all soft and am afraid to pick up things cos I don't feel that I have the strength to do so. Have been wondering is it my imagination.

Since last weekend, have been feeling that the left side of my face is swollen and that its being dragged down. When I catch glimpses of myself in the mirror, sometimes my left side seems to be sagging down and I seem to be look like this :\ Am also having more problems with my speech this week, can't pronounce properly, all the Ls, the Ps, Bs etc.

Have met with a chiropractor just to make sure my bones are not the one thats causing all these problems, and he mentioned that he's also concerned about the tremors that I get when he's testing my strength. I can't seem to control it, the tremors always appear when I'm being tested for strength. But he did say that my bones appear to be fine and he probably can't help my conditions much.

Thanks so much Cricket. I'm supposed to be seeing my neuro soon, though am thinking I may want to give it a miss, or go there and ask him all these qns and demand an explanation of what tests I've done. On 2nd thoughts, maybe I should since I've spent so much on them! Its just that I get superbly tired whenever I step out of the house, and am always so tired by the time I queue to see my neuro, so as you can probably guess, am not in the right state of mind to process what he's saying.

anyhow, am sure that I'll get through this, especially now that I've found this site. Maybe I just have to believe in myself. Its tough explaining everything that I'm feeling, there's just so many symptoms. And I guess its tough explaining to people who have not really experienced it.

Once again a big thank you to all of you!

So sorry, realized I got most of your names wrong. Pardon me. My world seems to have slowed down since my symptoms started. Keep doing funny things sommetimes.

Thanks Brian, Maurice, Becky and Stephanie!

Tested myself yesterday with the Strength test mentioned by Maurice and currently my score's about 60-70. There's the range as wasn't quite sure what some of the steps meant, but trembled through most of it. Think it seems like a pretty good score.. HaHa...

Hi Connie!
I glad to read that the test I was refering to helped you in quantifying your problems. And yes, 60-70 is a rather good score, I told you my lowest was 32, but at that time I had generalized MG which means that nearly all muscles were weakened. Partial good scores indicate that these functions are not affected and repeating the tests after a while will quantify the evolution, which I hope will be positive.
Maurice.

I'm new here and lucked onto this site. I was put on mestonin about 2 weeks ago by my neuro. My acetylcholine test came back negative and was through the EMG with upper leg muscles being weak. I have the double vision, droopy eyelids and weak eye muscles. There are days when I'm so fatigued I don't feel like doing anything. My doctor wants me to have a MUSK test. He's positive I have MD and wanted to put me on the drug to see if it helps. I started out with 1/2 a pill twice a day for a week and now am on 1 pill twice a day. Some days my eyes twitch and others they don't. My eyelids are still droopy. I was wondering how long till this mestonin takes to work. I'm suppose to call my neuro after using it 30 days to let him know if it's working or not. When walking up steps it feels like I have cement blocks on my feet. I've noticed the mestonin helps that on some days.

Annie put it all down great. MG effects everyone differently, that is why there are so many different stories. Mine effects my upper body {although lately I have noticed it in my legs as well} Rest, rest, rest.. I actually spent Tuesday in bed all day, only getting up to potty and I haven't done that in over 17 years {the staying in bed part..LOL} This site is just the best in meeting people and learning about MG and how it effects peoples lives. Oh and remember you are NOT crazy {we have all been told that} Welcome aboard.

Joanmarie - I'm so glad you clarified this! LOL
Marcia and any other new members - WELCOME

Because MG can fluctuate day to day, even hour to hour, once you get going you may find you need it more or less than your Rx says. Try to keep track (preferrably in writing) of how you feel before taking the Mestinon, when you start feeling relief, how long that lasts, what you were doing during that time frame, etc.

This will help your doc to determine the best dosages for you. If you notice any shortness of breath or extreme increase in weakness call your doc or go to the ER as this could signal a crisis. I mention this because on my first real serious bout with MG, 60 mg 2x/day didn't even come close to keeping me safe.

I had several episodes on the couch barely breathing, unable to move or even respond. I only had a prelim dx at that time, and didn't know anything about MG - hadn't been warned about the symptoms of crisis - and am just really lucky to have survived it!

Mestinon can take effect within minutes - for me it takes about 20 minutes when I'm really bad. It's not one of the drugs that has to build up in your system before working, and doesn't stay in the system for a real long time - 24 hrs is generally more than enough to clear it.

If you aren't noticing a dramatic improvement after keeping your log, you may want to call your neuro and see if you can try increasing the dose - don't do this without checking with them though! I am at a point (14 years with this disease) where I'm allowed to dose myself as I need to - sometimes 60mg every 2 1/2 hrs, sometimes 30 mgs for 6 hrs - but that's because I have so much experience with recognizing my bodies signals and know what can happen with an overdose.

Glad you've joined us - I look forward to sharing experiences with you!
It's a very scary time, just after a diagnosis, with millions of questions and emotions. It's difficult having a disease that is rare - you have to learn so much on your own. I wish I would have had a forum like this when I first discovered mine. It could have saved myself and my family a lot of stress and uneasiness.

Hugs to you .

Becky

Hello and WELCOME to neurotalk! You are gonna LOVE it here! So many different points of view and so many smart and caring people! It is awesome!

Fatigue is common with MG - this waxes and wanes - there will be days when you feel AMAZING followed by days when getting off the sofa/bed seem impossible.........once you are on the RIGHT amt of meds it does even out = though it does take a bit of time!

Mestinon usually works for me within 20-30 min or so. I am also on pred - need it in order to survive........

Sounds like you need to "up" your meds or have IV IG or the plasma exchange done - they are wonderful for most of us!

Tell your dr that the mestinon just isn't cutting it and you need additional help!

Erin

Hi Marcia! Welcome!

I have problems with the stairs as well, my legs just feel so heavy sometimes. Though I'm more afraid of going down stairs as sometimes my legs just give way when going down. I find holding on to the rails extremely helpful, and it'll be great if there's someone with you just in case. Different parts of my body twitches as well, so i think its probably ok?

Not sure if any of you have tried it, but I've found that certain kind of massages are great for relieving the symptoms. Am also able to sleep well after the massages, so perhaps its worth giving it a try! After all it does wonders to the aching body...