I expect this is going to sound like a stupid question, so apologies right now!

Do your symptoms vary? Mine do. Ive noticed that some of you report that your symptoms are bulbar, obviously they can vary in severity. My symptoms tend to hang around for a while and then go away.

For example earlier this year I had problems with choking on my own saliva, this would happen several times a day. Happened for several weeks and then went away.

Again earlier this year I had really bad problems with Nystamus (jerky eyes), every morning for weeks my eyes would jerk so bad in my head I couldn't see properly and I would end up going to bed and sleeping for a couple of hours to wait for it to pass. Haven't had it since June, yesterday I had a small episode of it.

Ptosis and facial weakness have been my symptoms for nearly three years. Last couple of days not much ptosis. I have been limiting my activities completely and being very good with the mestinon, which probably explains that.

Does anyone else have symptoms that plague them for a bit and then disappear for a while?

Or am I, as you have probably already suspected, very strange!LOL

Love
Rach

My symptoms vary.....I always have trouble with my arms and hands the most, but throughout the day, week, month, they will rotate to my legs, bulbar and face. I notice as they get more severe (usually due to an infection or cold or stress or heat...hehe or flavor of ice cream I eat, J/K) certain muscles start up. As a rule certain muscles are always affected, and somewhat controlled by my Mestinon....but the worse it gets, more muscles come into play. My neck and throat are usually on the more severe side of the spectrum...and when I have trouble with my tongue, I know it's time to retreat to my happy place and ride it out till my next dose, or the next day. I would like to add, the prednisone is slowly slowly reducing the varying-ness, and keeping my symptoms a little more stable throughout the day....YAY.

Jessica

Yes, definitely! My symptoms move around from one physical location to another and they also vary in severity from hour to hour and week to week. I never really know what combination I will have. Usually the symptoms will stick around for a few weeks and then recede. I'm also adding symptoms as time passes. In the past couple of years I've added facial weakness that makes me look like I have had a severe stroke on my right side and difficulty speaking (still pretty rare). In the last week I've had hand weakness coming back and I haven't had that for several months, at least not to this degree.

Overall I'm am getting worse and worse although every once in a while, for a few weeks even, every symptom will recede and I'll feel almost normal. That is soooo wonderful, and then I'm completely heartbroken when my body dives right back in to being so sick.

Hope this helps.

Ally

[/QUOTE]
Overall I'm am getting worse and worse although every once in a while, for a few weeks even, every symptom will recede and I'll feel almost normal. That is soooo wonderful, and then I'm completely heartbroken when my body dives right back in to being so sick.

Hope this helps.

Ally[/QUOTE]

Hi Ally-

I would strongly suggest that you keep a running log of everything you eat/drink -medications and all- on a daily basis. In addition add what you have done during that day and a synopsis of your symptoms. I may be totally naive in all this but based on my own personal results I still believe (hope) that the disease can be largely or perhaps completely controlled through proper nutrition and supplementation. You MAY be unknowingly giving your body things it needs to control/mitigate the disease prior to or during the times your symptoms recede/disappear.

I started with the bulbar form over three months ago. VERY severe weakness from the throat up however it did not affect my neck muscles. I'm actually down 20+lbs from not being able to eat during that time plus the dietary changes I've made since then. In the beginning I had no idea what was wrong with me and quite honestly I was scared to death. I spent an incredible number of hours on the internet researching and matching symptoms. Thank God for the internet and the knowledge of those before me. Nothing seemed to match except MG.

This was during the first two weeks. My symptoms had not changed much during this time. I had seen my PCP but had not yet been able to see the neurologist. So- even though I really wasn't sure what was wrong I decided to attack it as if it were MG. Again- maybe I'm being naive in all this but I figured a certain set of circumstances caused this to occur, therefore another combination can make it go away. And I hadn't seen anyone yet who told me it couldn't be done.

So at the two week point I started experimenting. During the third week I noticed my symptoms starting to VERY SLOWLY recede. About every three-four days I would notice myself being a teensy bit better than I was before. I varied my regimen, adding and deleting things, trying to find a program that worked the best. At about the four week mark I saw a neurologist and got my diagnosis of MG at about six weeks in. I did NOT want to believe it. I saw a second neurologist. The diagnosis was again made as MG. I guess there is no doubt.

Gotta shorten things and wrap up a bit. I type to slow and have to leave for work. To this day my symptoms continue to improve. I have never taken the mestinon. I did not want to mask the symptoms because then I would not know for sure what was working and what wasn't. I'm probably 90% problem free. The better I get the slower the improvement seems to come but nonetheless it does come.

Is it possible that everything I'm doing is of no value and that the disease will come and go as it pleases? Of course it is. I am fully aware of any risks that may be involved. I saw my neuro again yesterday. He is not happy at all that I am taking no meds yet he had to admit that I was improved from the last time I saw him. What it came down to was this- I asked him if in his experience had he seen anyone get better by doing nothing. He said no. I said well, by accident or design then I must be doing something right because as of now I have been doing nothing but slowly getting better.

Read. read, read, The info is on the internet for all to see and piece together. If you are interested I will post more at a later date. Gotta leave now.

Rob D.

Yes, Yes, Yes.... and boy is it frustrating! My poor husband doesn't know how to handle it.. LOL. The other day I had a book signing and my husband and son drove me and when we arrived my son said "Mom, why do you look mad?" I laughed and said, it's time for my medication, as my facial muscles just go lax. Yesterday was a really bad day but so far today I feel great!

Thank you to everyone for their responses. Im sorry its taken me a little while to respond properly but in the last few days Ive had to battle sciatica (thankfully resolved) and a stomach bug that has left me quite weak.

My ptosis for the first time in 3 years seems to be happening less, but a new symptom has appeared in its place. Its not entirely new I had it in June 2008 but this is the first time its happened since then. I have extremely weak legs. Those of you who have gotten to know me, know that I dont do a lot of walking anyway, using a wheel chair outside the house.

Today I was stood in the kitchen waiting for the kettle to boil and all of a sudden my legs started to shake violently and I started to sink. Like my thigh muscles couldn't keep me upright anymore. I made it to the sofa and took two mestinon as I was by myself. Hubs was visiting family an hour away. For around 45 mins I couldn't stand. Im now back on my feet but it was very scary. After any walking now my legs are shaking with fatigue. The mestinon has helped, but Im extremely limited in what I can actually do. What fun!

Lets wait and see what the rest of the day brings! Oh the joy of (undiagnosed and untreated) MG!

Love
Rach

Rob (Aries)

I agree with keeping a log of everything you eat, do and how you feel...

The only bad thing is that keeping a list is another thing to do that uses up energy...I keep telling myself to keep this list and I am not successful (yet!!!). Definitely a good tool for better health.

Rach,

My symptoms vary too and the unpredictable weaknesses drive me crazy. I am learning more and more about things to avoid, or at least to avoid in times when I need all my strength. Some of the unpredictable things are not so unpredictable when I start paying attention to all the details in my life.