Muscle twitching and weak knee

[KarenNWendyn]

That too can be a normal variant.

At this point, people on the forum have done all we can to reassure you. I’d suggest you do not post here again until after you see your neurologist. I’m sure s/he can answer any questions you may have in the meantime. Thanks.

 

[John2]

I know people have done what they can to help me and I really appreciate it, especially considering what so many people here have to deal with at a personal level. The news about my jaw reflex came as a serious blow as I was trying to think positively but I will have to hope that is something that I have always had. I don't know if I will see that neurologist again as I will hopefully now get a referral through the public health system but I will contact as many private clinics as possible in different countries to see if I can get an EMG any earlier. I guess you are right that all I can do now is wait: see if anything shows up on the MRI later this week, see if there is any change in my symptoms, and try to get the EMG as soon as possible as that seems to be the main thing that could potentially rule out ALS/MND. I now have twitching and a feeling of tightness in the back of my left knee as well, which is the one where I also have weakness, but I guess stress and anxiety can't be completely ruled out as the cause of my worsening twitches these last few weeks since I have seriously been worrying about the possibility of ALS. The weakness in that knee doesn't seem to have got any worse over the last 6 months or so but maybe that it is just because I have done the exercises from my physiopherapist - it hasn't really got any better either.

 

[lgelb]

I agree with Karen that the "possibilities" list is still very long and MND still far down on that list. The spine issues we talked about earlier, for example, can certainly cause all the UMN issues described, and tingling as well. And mild weakness on one side might not even be part of the main issue. Try not to worry --

 

[John2]

Thanks for your reply Laurie, I know there are a number of possibilities but it does seem like many things are now lining up to suggest ALS. I don't understand everything in the neurologist's letter but it certainly sounds very alarming. Any of these things in isolation is obviously not concerning but when you put them all together it is hard not to feel sick with fear and worry. I know ALS is very rare but it must also be rare to have all these symptoms simultaneously without having some of kind of neurological illness.

 

[John2]

Well I have now had a spinal MRI and it is apparently "normal", which gives me more cause for concern. But I guess that doesn't necessarily rule out peripheral neuropathy or benign fasciculations. The weakness in my knee doesn't seem to have got worse over the last 6 months at least and it even feels a little easier to go up stairs now after doing the exercises from my physiopherapist but I know that ALS can develop slowly in the beginning. I am in addition having some sensory sensations from time to time, like a hot feeling in the feet, cold or slightly numb toes, or an electrical feeling in my toes and the top of my feet, which makes me think it may be some kind of peripheral neuropathy, but I have read that these sensations are sometimes possible with ALS too and it is not something that I feel most of the time. The twitching is constant now in my feet, particularly the right one where I have had a tingling feeling since last September (which may or may not have been caused mainly by constant fasciculations) and also the back of my weaker knee but I get twitches from time to time anywhere in my legs, in my hands, abdomen and even temple. I will have an EMG next week and am absolutely terrified.

 

[KarenNWendyn]

The fact your knee is showing some improvement following physiotherapy is very reassuring. The sensory symptoms also point away from ALS.

Your EMG is next week. I’m confident it will give you good news.

I urge you not to post further until after your EMG.

 

[John2]

I had the EMG today. The full report won't be available till next week but the woman who did the test said she saw no indication of ALS. She just tested both legs and an arm but I assume that there would have been some abnormalities visible if I had ALS anywhere. I am really happy and relieved and determined now to stop thinking about ALS. She said I may have some less serious non-nerve related muscle issues due to the weakness in one leg but I now have a referral to a neurologist through the public health system so they can do further tests but I am no longer that scared about the twitching. There was no obvious sign of peripheral neuropathy either and she didn't see many fasciculations even though I can still feel them. But hopefully now that I am not as worried and stressed about the twitching it will start to diminish over time.

I am really grateful for all the help and advice I have received over the last few weeks. It has been a big help and over the last week or so I was able to think more positively and convince myself that ALS was unlikely. It can't be easy having to address the huge number of people who come here paranoid about ALS, especially for those who have far greater concerns of their own (either with regards to themselves or a loved one), but you all do an admirable job showing empathy and understanding to those of us who come here looking for support and reassurance. Thank you and best wishes to all of you.