Dealing with MG
 

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？ :confused:

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 ConnieS!
 

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!:D

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! :D

Hang in there!
Erin:D

Forgot something......
 

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. :cool:

Sometimes I feel that I'm imagining all the symptoms as there has been no diagnosis, thought I was going crazy.:D 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.." :eek:

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 :D:eek::rolleyes:

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, and welcome to the forum!

Not being able to open your mouth is somewhat different - as you have read it's usually a problem of not being able to close it.

As far as finding a new neuro in your area, where do you live? There is a site where you can do a search for free. You can check by location and specialtly, then get ratings on where the doc was educated, the hospital they work from, etc. Go to vitals.com to check on this.

I found my newest neuro by just doing a google search for neurology + Denver CO, then kind of visited websites to see if they specialize in neuromuscular. I got lucky and found one that lists MG as one of her specialties. That's unusual to find though.

You do have to investigate what sub specialty a neuro has. Some really keep up with vascular neurology (migraines and such), some with head injury, etc. You'll want one who's main interest lie in the neuromuscular areas. If they don't list this, ask about it in a phone call. Whether this is MG or not, it certainly sounds neuromuscluar.

Good luck with the testing, and ask your current neuro for copies of all the reports! This is essential always in "neuro world" but especially if you are thinking of changing docs. I still have records from way back that keep coming in to play ( I have a secondary, as yet undiagnosed, condition).

Also, ask your doc to discuss the tests - what they were ruling out or looking for and why. He should be willing to do this - if not, ask him why he doesn't feel you have the right to know??

Best of luck to you, and please keep posting. I always get nervous when we don't hear from someone that posted once to tell us they're having problems then never post again. Even if they start heading another direction on you, that information can be of importance to the rest of us here.

Once we've heard from you, you're part of the "family" so keep in touch, ok?

Big Hugs to you!

Hi, Connie. Sorry I haven't chimed in yet - I've in the middle of an MG flare. That's when your symptoms get worse.

Yes, your symptoms all sound like MG. MG is basically skeletal muscle weakness that is worse upon exertion or repetitive activity. Eating is definitely repetitive! Just take smaller bites of food. I have found that during a family get together, I am always the last one at the table because I need to eat so much more slowly.

TEN WEEKS to get an antibody test back? Where'd he send it - to the Space Shuttle? It should only take a week to ten days. And I hope he did the Acetylcholine Receptor panel AND the MuSk antibody test.

You may not even realize that your eyelids are drooping. You could go see a neuro-ophthalmologist for an evaluation. They have these tools they can use to see if you have fatigable eyelid muscles. What they do is have you look at objects and see if they are "aligned" vertically or horizontally, etc. If your eyes are both aligned the same, they should see (for example) two horizontal lines on the same plane. I saw them as one up and one down!

There's the Tensilon test too, which not a lot of people do anymore. It's where they inject a fast-acting version of Mestinon and see if ptosis gets better.

Does the blurry vision get better when you close one eye? That's "technically" double vision if it does. If it's due to MG or a similar problem, it will get better when you close one eye.

Until you see this guy again or get another neuro, stay out of the heat. It makes MG worse. Go to www.myasthenia.org and read more. Ditto on what these guys have said about neuros and tests, etc. You need someone you can talk "with" and not one who talks "at" you.

I hope you get some answers soon.

Annie

Annie, great info you just posted !

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 :winky:)....

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!!!:grouphug:

Stephanie

Thank you!
 

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! :p

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. :hug: 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. :o

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! :grouphug:

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. :D

Thanks Brian, Maurice, Becky and Stephanie!

My Score
 

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.

new member
 

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. :grouphug:

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

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 :hug: .

Becky

Welcome MarciaD
 

Hi Marcia! Welcome! :winky:

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... :Popcorn:

Twitching
 

Thanks everybody for the support and info. I noticed that taking mestonin makes my eyes twitch and now, as of today, my lips are twitching. It looks like my muscles are jumping. It's very annoying. This doesn't happen every day when I take it, just some. I don't know why. What do you mean by IV IG? I'm a phlebotomist so I kinda know most of the tests they do and why, but I'm new to this one.:)

Does your ankles turn easily?:confused: I have noticed that my ankles give out...and my legs are so heavy...I am wondering if this is due to neuropathy in my legs or MG....but mestinon really helps though....

My hubby installed some safety rails for our garage steps...I use the railings for support...I think I need to ask him to install me some safety rails in our big tub...I have been having some difficulty getting out of the tub at times...

Stephanie

Hi Marcia and welcome

http://en.wikipedia.org/wiki/IVIG Here is a link to info about IVIG, which is Intravenous immunoglobulin, it is a blood product that gives us a boost when our MG is flaring.

http://www.mestinon.com/ Here is a link to Mestinon, one of the side effects is muscle twitching. I get it in my arms and legs, it really is quite wierd to watch, thankfully I don't often get them in my face.
Hope this is helpful
Kate

Hi Stephanie!
 

Hi Stephanie!

Yup my ankles feel pretty weird too. And the ache a lott.. Its like my movements are more controlled, can't be as swift as I used to be. I used to run up and down the stairs a lot, now I'm sort of grounded to the ground floor. A lot of my joints ache more now, and it feels as if the joints are stuck. Though my case's still undiagnosed, so I too am not sure if it is a common symptom in MG. Anyone else experiencing this as well?

Do be careful in the tub! I slipped once and had a big bruise which took weeks to heal. It may also be a good idea to put non-slip mats in too. We've since had a stone seat installed in the shower area, so I can now take showers sitting down. :D

My ankles are fine, it just affects my upper legs when going up steps. I'm fine going down the steps. I'm having a bad day today, lots of twitching in my eyes and face and it's making me feel sick in the stomach, plus I'm exhausted. My neuro ordered my MuSK test and just waiting for my insurance company to ok it. The neuro said if it comes back negative he wants me to go see a intra muscular specialist down at Penn State Milton S. Hershey Medical Center to see what his opinion is. I just want to start feeling better.

Hello all!
 

Hi Marcia and Erin!
 

Welcome Marcia! :hug: This forum is great and you're gonna love it here. Are you feeling better already? Do hope your claim goes through so you can do the test quick. I haven't done it yet, but believe that the sooner we do it, the better! Is the mestinon starting to take effecT?

To Erin, I most probably am having generalized MG, with mild ocular MG. Didn't realize I was feeling weak, until the GP did a strength test by asking me to pull and push.. Do think that most of us will attribute our weakness to exhaustion so that maybe why most cases of mild MG does undiagnosed too.

Cheers to all of your fighting spirit!