Just a couple of weeks to go to see the neuro now, and no I don't sleep well. I tend to wake up worse than I go to bed sometimes.
Waiting to see the results of blood tests at the moment, maybe they will show up something metabolic who knows.
Hi~~
I hope you are doing well. You should feel really good that they said that it most likely is not ALS. It's amazing remember, what your mind can do, once you are worried about something.
I had my second visit with my neuro today. It went pretty well, I think I should feel pretty good about it. Since my last visit to him, I've done lab work, and a sleep study. The sleep study didn't work out too well, since I didn't sleep much. The labs were ok I think, other than my glucose being too high, and some other minor things. He seems to think that the cause of my twitching is the combination of these two things, the sleep issue that I have, and the blood sugar problem. He explained this in depth, but to try and quickly explain it here, because I think it could help you, he said that twitching can be caused by so many things. The thing he explained to me was called Metabolic syndrome, and he said that is a state that your body is in, in which you are sort of pre-diabetic, but it's more all about your blood sugars being too high, maybe high cholesterol, and triglycerides, and some other things. He sort of linked this also with my sleep issue, and said that when your muscles twitch, that just means they are not happy for some reason, and that could be a million different things. But, he said that I need to get on a regimin, and start to sleep better, and loose weight, and that should help. He said that with ALS, there would be some other problems with my lab work, but I wasn't sure what he meant by that. Anyway, he was very interesting, and talked in length about health issues, and how the smallest upset in your body can cause alot of symptoms, and then they work on each other. But, I need to address the obvious stuff, like loosing weight, and getting some sleep, and try to stop worrying about the rare things. He said that he wants me to do the sleep study over again. Do you have any trouble sleeping? You seem anxious, so I bet you don't sleep well. Well, good luck, and when is your neuro appt? I'll talk to you soon~~Val
Hi~~
Thanks for the post! I hope you are feeling ok~~I know how anxious all these symptoms can make someone!
It helps to know you are not alone. I read somewhere that even if you actually did have all the symptoms of ALS, even then you probably wouldn't have it, given that it is so rare. There are just so many other things that cause all of your symptoms, not the least of them being anxiety over all of it.
If you haven't done so yet, you need to get over to the forum called www.aboutbfs.com (I hope I spelled that right)...let me know if you successfully get over there! It is a great forum for those with twitching and other things, and there are so many people over there that are so reassuring and helpful! This forum is great also, but you have to check this one out also. Once in a while, I have trouble getting over there, something else comes up, but just if that happens to you, try again.
The twitching is just such an anxiety provoking thing. I am so sick of worrying about it, and there seems no answer in sight. I talked with the people who did my sleep study today, and they said that I was negative for sleep apnea. Which surprised me that they could say that since I was only asleep less than an hour, I think. I know that I have had some sleep/breathing issues, because I will wake up gasping for air for a few seconds sometimes. It occurs off and on, not every night, so I just think it wasn't caught there. The neuro originally said that either a sleep disorder or maybe blood sugar problems can cause twitching, but now that we are eliminating these more benign things that can cause the twitching, I am getting more worried that he will now start considering the more rare, scary things. It's a scary situation for an anxious person to be caught up in, because even if a doctor normally would scare you about something, you could take a test, and find out you are ok, but with ALS, it's not that easy. He might make me more nervous that I already am, and then just tell me to wait and see again. My husband says that they may never find the answer to it. I guess I have to look at it like that~~that just because possibly the sleeping thing and the blood sugar thing have been eliminated, that dosen't mean ALS, it could also mean that nothing will be found. I think that happens sometimes, which is how they actually diagose BFS. Anyway, get on that site, it will help you.
Good luck, and have a great weekend! Talk to you soon~~Val
I have just subscribed to that Forum.
I got so panicy yesterday that I went to emergency again, I was told this time that it most likely is not ALS and that I had no signs of weakness in my face muscles or the foot that is giving me trouble.
Nonetheless I don't feel much easier today. I probably have a number of things going on, some of them common enough, but because I have this twitchiness as well, I am trying to add things up which maybe don't add up.
The tongue thing does not seem like my other twitches although it is accompanied by them.
Well I shall see the neurologist soon enough but I will have so many symptoms to relate he will be overwhelmed.
It seems as far as emergency goes round here, if you can walk into the building, and can talk, you won't get an MRI or anything sophisticated.
As one twitcher to another, I have had that where a whole thumb will twitch, in fact it has happened on either hand and that has been one of my older and less worrying twitches.
Lately my twitching seems to have worked up to fever pitch and I can't recall ever having had so many and so frequent. The ones in my jaw are the most worrying to me. However I am getting them just about everywhere else, and everything from a feeling of vibration under the skin, to ones violent enough to move a whole arm, though those type are just a one off, rather than a continuos thing, thank goodness. It probably depends on what muscle they have decided to attack, if it is a small one then it is a ripple, if a big one like biceps a jerk
I guess Parkinsons can start in many ways. I read one account of where it started by the patient noting that he did not swing one of his arms when walking, well I noticed on video that I did not either, however I have been told more than once I do not have Parkinsons, although I wonder again with my twitching working out so much lately.
I go through cycles of anxiety and really start seeing weakness, atrophy, all the things I don't want to see one moment, and then thinking again, that my body is not perfectly symetrical and there is actually no way of my knowing what has been there all along and what would be a clinical sign.
I don't know whether Parkinsons tremors have to be there all the time, or whether they come and go. I was talking with someone earlier today about my tremors but my thumb and forefinger tremor had gone completely at that time only to return later on.
None of it makes much sence to me at all, which is why I am so desperate to have it all properly looked at by someone who can tell the difference between what is annoying but not dangerous and what is a definate sign of something more serious.