Hi,

Am new to this forum, and am glad I found it as where i'm from, there isn't much info on MG and there aren't any groups or associations whom I can turn to for answers.

I'm being tested for Mg currently, and am still awaiting the test results on my blood and it takes 10 weeks!! My neuro isn't exactly helpful, and there's just so many questions going on in my mind, as its test after test but yet he has not told me anything about what this is. I've donｅ the EMG　but its negative.

I've been experiencing weakness in my hands and legs for close to a year now, and since Feb, the facial weakness is starting to affect me. Vision is blurred and I'm having problems reading, eyes cant seem to follow long paragraphs well. So please pardon me for this upsizee of words. Find myself having problems pronouncing words properly, think its difficulty controlling my lips somehow，so find myself speaking really slow. Can't really open my mouth big enough to stuff certain foods in too. Are these symptoms of MG as well? If so, how do you all cope with the slurring? What tests did you have to do before they got you diagnosed properly？

Would really appreciate any reply.

Hi Connie,

Yes, the problems with your speech and vision are symptoms of MG. I found the difficulty with speaking was more due to my tongue than lips, it was partially paralyzed by the MG and would not work the way it is supposed to.

It is very manageable with mestinon. My thymectomy cleared up a lot of my symptoms and the remaining symptoms are being handled with medication.

I suggest you write down all of your questions and bring them on paper to your neuro. You deserve answers about what is going on with you and how (s)he intends to treat you.

Best of luck and welcome to the forum

Cheers,

Brian.

Hi Connie! Welcome to Neurotalk! It is a GREAT site for information and tons of really caring, wonderful people to help you along your way!

It sounds like you need a new neuro. Obviously the one you have right now isn't suited for his/her job. I think a lot of people will agree that when dealing with something as serious as MG, a caring neuro who actually LISTENS is the one you want to deal with!

I am still a newbie with this - I was dx'ed a yr ago and had my thymus removed as well. I am one of the "lucky" ones who has a GREAT neuro, but I am the exception to the rule.......sigh........

Are you on any meds? Mestinon? Anything? If you are really weak, you NEED meds in order to regain your strength............

You sound like you have all of the "classic" MG symptoms. If you are weak, please REST! MG isn't something to fool around with and you cannot "push" through it..........it will just make you weaker.

Once you ARE dx'ed and on meds, you will feel so much better. It does get better!

Hang in there!
Erin

Sorry......brain fog - another side effect of MG! LOL!

I was given EVERY test for MG - EMG, blood work - the one for antibodies that takes forever to get the results back), every test............and came back positive for EVERY one....

Did your neuro do a strength test? The eye test?

Erin

Hi Erin and Brennan,

Thank you so much for the prompt replies!

Yes, I would love to change a new neuro as well, but am not sure where to go to as well. Have been reading up a lot on MG with the help of the Internet and am kind of wondering is it MG or is it not!

I'm currently not on any meds, as my neuro isn't keen on giving a diagnosis yet. All he says is we'll monitor, we'll monitor... He has done some strength tests by asking me to pull and push his hands away, but nothing on the eyes so far. My lids don't exactly droop, just find it extremely dry, and feels like theres a layer on top and frds just comment that i look tired. Did you have to go to an optometrist to do the eye test?

Yes, am trying to find a balance between going on and stopping to rest. When I first started having the symptoms, would struggle on and on then suddenly find myself needing 3-4 days of rest before I can move properly, though at a snail's pace.

Sometimes I feel that I'm imagining all the symptoms as there has been no diagnosis, thought I was going crazy. After all, havent really heard about anything that fluctuates like this. My family thought it was psychological too and that contributed to the "I'm going crazy thought.."

Just to check, on jaw weakness, how do u deal with it? Have read that its hard to close the jaw, but mine's more like tough to open wide, which seems to be rarely found in MG.

Mmmmm, yeah it's all in your head. It's all in all of our heads. We're all mad as hatters

My neuro wanted to monitor after my thymectomy rather than put me on any medication. It was my oncologist who encouraged me to push for mestinon at a low dose to see what that does. It helped me a lot, I wouldn't have made it through radiation therapy without it.

The eye thing with the dryness is common in MG too; you're just having problems with a different set of muscles and your eye lid is not blinking completely.

While I'm not a doctor; I'd suggest asking for a prescription for mestinon and trying it to see if it helps.

Best of luck

Brian.

Hi Connie, welcome to this forum!
I also think that the symptoms you describe fit well with MG. I also had some problem in keeping my lower jaw up, probably because of jaw muscle weakness.
When Erin was talking about eye test, I think she head in mind the test some neuro perform with one finger moving up and down, then left to right, one foot away from your face to check whether you have good coordination of both your eye muscles, am I correct, Erin?
I described in one previous post:
http://neurotalk.psychcentral.com/sh...825#post406825
(post 13) a serie of simple tests run regularly by my neuro to quantify the degree of my MG, you may try this to check by yourself.
I presently have a score of 100 but I went down to 32 about 20 months ago, so as somebody recently asks, yes, there could be some light at the end of the tunnel…
Maurice.

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!