Hello Arijana and Bunda,
first of all, sorry for the late reply (to Arijana particularly) – as soon as I have came back from my holidays I came down with the flu and I am only now getting back on my feet!
I have not started my leaky gut diet yet, I will do this in two weeks time when my visiting parents leave and there aren’t so many culinary temptations around anymore. I must admit that I am surprised, incidentally, how much better I am dealing with “naughty” food, in terms of symptoms such as bloatedness/unwellness, since I have come of the candida diet a few weeks ago. I have been drinking small amounts of alcohol almost daily for the last 4 weeks, including beer, and have had barely any bloatedness, which I used to get quite regularly before the diet. I have kept other sugars and wheat and dairy products to a minimum, but it is good to see at least some initial improvements and enjoy a small respite before the next phase of hard work!
Now to your questions, though. My MG symptoms are mainly arm and leg weakness and fatigue, which are quite distinct from each other and can, but do not necessarily, appear at the same time. From what I read, many people start off with ocular MG and then progress to a generalized version, but I seem to have started off straight away with the full-blown version, so I think that it is not necessary to have significant eye problems before the extremity muscles are affected by MG. I do occasionally get a slight eye lid fatigue, which I normally only notice because I am straining myself unconsciously by trying to keep my eyes open at normal levels instead of letting them drop! But this is, in my case, a minor symptom which has never yet developed into double vision or dizziness; once I realize what is happening, I just let my eye lids drop to half-way, and after a while (up to 1-2 hours) the problem generally disappears. Arm and leg weakness manifests itself mostly after sudden bursts of activity like in sports, or after I have been straining my muscles for a while. A typical example for that is climbing up stairs or mountains – by the time I climb down, my upper leg muscles are struggling to keep up and have a tendency to give in if I bend my legs too much. Fiddling with small objects seems to also provoke weakness in my hands/arms. Arm/leg fatigue, on the other hand, can appear anytime, and is more prominent during the days before my period and when I am infected with the flu etc. (weakness as well). My muscles then just feel tired, even if I am not! Other symptoms which have appeared, or got worse, since I had myasthenia, are sleep apnoea and muscle “burning”. The latter is not described as a typical symptom of MG, and I am hoping that it might be caused by the leaky gut, and fixed by the treatment I will soon undergo. Finally, the blocked sinuses/nose problem I have had for several years longer than my MG symptoms, so I am not sure to which extent they are related. Arijana, I would be really interested in hearing about the details of the diet you followed to rid yourself of your sinus problems. In my case, there has been no response whatsoever to changes in diet as yet – but I have never stayed on a diet for longer than 7-8 weeks, which was the candida diet from the web site.
So Arijana, I think from what you describe that there is a chance that some of your symptoms might be caused by MG if the polymiositis does not explain it. Perhaps you should get a neurologist to test for it? I reacted to Mestinon straight away, and was also lucky to have a positive result in my blood test, which is not always the case with all myasthenics. Let me know how you went.
Bunda, it took me also a while until the die-off symptoms appeared, and they lasted for a lot longer too than most people report, so I wouldn’t give up just yet. I know what you mean though, it is so hard to pinpoint what exactly is causing which symptoms, and easy to get demotivated! But we have no other choice than to try to remove, one by one, possible candidates and hang in while we assess the results… I was also hoping that Candida was the cause of all of my “hard to assign” symptoms, and it certainly was part of the cause. Now my hope is turned to the Leaky Gut issue – lets see what comes next ☺
I will get back to you as soon as I have any results from my leaky gut diet. Thanks for your feedback and detailed descriptions, it really helps to hear of other people with similar sets of ailments and see how they deal with them!