HELP! I'm left trying to diagnose myself!

[twitchaholic]

Hello. 38 year old female new to this site. I fell like the luckiest person alive to have found this site and I am hoping some of you who have contributed for a long time can tell me if I am on the right track with what ends up being a self diagnosis. Sorry this might be lengthy. Here is my story followed by a few questions:
About 9 months ago my calf started twitching visibly. Maybe once or twice a week it would also cramp up in th middle of the night (ouch). Saw a Neuro who did an EMG and nerve conduction study which he claimed were normal. Fine. No mention of BFS or its existence. Nothing. He didn't even mention the term "fasciculation." I was pretty convinced at that point I did not have ALS, but I have an uncle who died of it two years ago (so you never really stop worrying).
8 months ago I found out I had a cystic thyroid and had darn near the whole thing removed. Now I am stuck taking Synthroid forever. Oh well. Thyroid is testing normal so I don't think this is related but thought I would mention it.
Enter tons of financial stress though I never thought I was the kind of person who had physical manifestations of stress. Don't know if it factors in.
Then about a month ago the twitching in my calf went off the twitch-map! I read "BFS in a nutshell" by Aaron and laughed when I read about "thumpers" because I have them. Literally my right calf thumps and twitches all day long and it is constant. Big twitches that are highly visible. I bet my calf twitches 2 or 3 times a SECOND. It isn't just one muscle. It looks like it is every muscle in my calf! It is far worse at night making it really difficult to get to sleep. Feels like my legs have electricity running through them. They even jolt sometimes (mostly the right leg). My calf sometimes cramps but mostly its the thumping that has me nervous. And my calves are really sore but not weak. I too have done the tipto and heal test on myself over and over. I also experienced a two day period of what I think is called buzzing. Felt like a bug was crawling on my ankle. Drove me crazy. Never had buzzing before so the ALS fears returned. Next thing you know I am getting sporadic twitches in my shoulder, my forearm, my thighs, and even my side. So, back to the GP. He won't do another EMG because he said it was too soon. He was nice enough to say he doesn't "think" I have ALS, but we'll know in a few months when I have the new EMG. I don't think he has ever heard of BFS as he never mentioned anything. Just peachy. I get to wait for about 4 more months to get the experts opinion.
Well that's where I am now. No real diagnosis but I know I have something. Found this site and thought maybe this is what I have. I know no one else can give me a certain medical diagnosis, but I would sure appreciate your thoughts on anything I have mentioned but especially:
1. Does anyone else have these constant "thumpers" that get way worse at night?
2. Any thoughts on the sore calves? Is this an indication of weakness?
3. Can the constant twitching cause muscle soreness?
4. Is anyone fairly certain that by now ALS would have progressed to real weakness?

I am sorry this was so long.
Thank you so much to anyone who responds. Everything I have read so far tells me you are all such nice people.

[sheilainsa]

Hi there

I know exactly what you mean about relief when you find that these very strange symptoms are shared by others who have been diagnosed as being 'benign'. My twitching patterns are a bit different - but then I think there's no real average here. I had a few really scary thumpers in my back 4/5 years ago - then nothing till October last year when I was in the middle of 2 exams. Like you I didn't think such physical signs could be anxiety (I wasn't consciously anxious but all my relatives believed that was the reason) - but the persistent twitching started then. Only a few thumpers and hot spots, mostly between 10-20 smaller twiches a day, anywhere, any time - and I also get tremors and the occasional jolts. I've had one EMG and the neuro said it was BFS, I'm sure in the absence of anything else diagnosable. I think its a bit of a default cop-out myself.

My GP's also didn''t seem aware of BFS, but they did say lots of people twitch and I shouldn't worry. It was the jolts -especially when my head jerked - that really scared me but I found out from this and Brain Talk that they're a common symptom so I worry less about these too.

I think you'll find either through responses to your post or from searching the site that you'll find some people with the exact same symptoms but I wouldn't worry about the pattern of them. The only time I had a thumper that wouldn't stop was when I had had an extra long island ice tea - or two..

And from what I've read (lots) I'd say you should not concern yourself with ALS. Also my sister's friend had this and she just went down so quick with very different symptoms, twitching was only a late thing with her. I subscribe to the 'a headache is not a brain tumour' theory.

Good luck
Sheila

[twitchaholic]

Thanks, Sheila. I have not been able to sleep and was desperately hoping someone would reply to my post. I have been looking at all the postings on the site for hours and it's almost 4 AM here. For some reason the fact that I cannot find anyone with EXACTLY the same twitches as I have makes me still nervous. I wish I was a text book case though I am learning there is no such thing.
I think that thing that bothers me the most is the CONSTANT calf movement. It's literally all over my calf and makes it hard to sleep. I don't drink but I am thinking that might help (just kidding). I can't imagine one can twitch this much without doing muscle damage. What do you think?
You are right about ALS. My uncle had it and it went very quickly. I seem to be able to move just as I always have. It breaks my heart to see so many people worrying themselves sick about ALS and I do understand that.
Maybe I will get lucky and someone whose calf twitches consantly just like mine will reply. In the meantime, I am so glad you responded. Thanks very much! Guess you are up late too...

[jcavan4125]

Hi,
Your symptoms sound very typical of BFS and no weakness after nine months with an initially normal EMG only supports that! It really doesn't matter if you find someone with exactly the same symptoms as you, the overall pattern fits BFS. The second EMG (if normal) will rule out ALS completely, however, by the time you get it the time lapse alone will have ruled it out for you. According to a study at the Neuromuscular Diseases Unit in Vancover British Columbia (physicians that see both ALS and BFS all the time) the longest they ever saw a patient with fasciculations only go before progressing to weakness was 13.6 months. You are already at nine months, you are way past the odds. This was the famous 6.7% study that people often refer to as the "Mayo Clinic" study which is not correct, but that doesn't matter. The point is these patients presented with fasciculations only and eventually progressed to ALS. None of them had an initial EMG, if they had, it would undoubtedly been abnormal unless it was done very early on. This does not mean that 6.7% of people with fasciculations only will eventually develop ALS, it means that in this study, they found that 6.7% of people with ALS presented initially with fasciculations only! I hope this relieves you mind; nine months of twitching only, no weakness and normal initial EMG.
I know that four months is a long time to wait for an EMG, but you can be glad knowing that by the time you actually get, you won't need it. Good Luck!

[twitchaholic]

Hey there! Thanks so much for the reply. I had read a little about the "Mayo Clinic" study but I didn't recall the length of time before those patients progressed to ALS. I guess the fact that my calf twitching just gets worse and worse has me on pins and needles (pun intended) while I wait for the new EMG. It's a real freak show. After months of twitching and only just discovering BFS is a real condition (by accident I might add-no help from doctors), it would sure be nice to find a twitching clone. It would make me feel better. I am anxious to read the poll results. Maybe I will find a twin. Will do that now.
Thanks again for responding. Gosh you all are nice!
Counting the days until the EMG...

[KERRI]

Hey there! Thanks so much for the reply. I had read a little about the "Mayo Clinic" study but I didn't recall the length of time before those patients progressed to ALS. I guess the fact that my calf twitching just gets worse and worse has me on pins and needles (pun intended) while I wait for the new EMG. It's a real freak show. After months of twitching and only just discovering BFS is a real condition (by accident I might add-no help from doctors), it would sure be nice to find a twitching clone. It would make me feel better. I am anxious to read the poll results. Maybe I will find a twin. Will do that now.
Thanks again for responding. Gosh you all are nice!
Counting the days until the EMG...

In the mayo clinic study no one progressed to als.

Kerri

[Renae]

I have gone through stages of different "hot spots", but i definitely twitch an awful lot in my left calf...to the point that it has made me a complete wreck. Not only do I twitch a lot there, but I have a lot of pain in that calf and even feel like I have lumps there. I've been to the Neurologist several times, clean MRI, clean EMG, etc. He said nothing about BFS, but also said he couldn't find anything to be concerned about...come back in 4 months (that kind of thing). I've been to a Rheumatologist who thinks I have a Fibromyalgia type syndrome because I've had a lot of other strange symptoms and a lot of aches and pains all over. But, it seems that most of the pain has been concentrated in my left leg...mostly the calf, but lately up into the back of my thigh as well. It's off and on pain, though. I did go to a surgeon about what I thought were lumps in my calf muscle and he said it was fine...just that calf muscle is more pronounced than the other. The rheumatologist and my PCP said the same thing, basically. It just makes me crazy because I feel like that leg bothers me so much. And lately, I've been getting a weird sensation that I can't even describe. It kind of feels like chills or goosebumps or tingling. I don't even really know. But, its very disturbing. All of my doctors just seem to think I'm an major anxiety case, which may be true! I just need to learn to accept that, I guess. So, I don't have the exact symptoms that you describe, but definitely similar and I can certainly sympathize with your anxieties. Its frustrating to just feel like you have no answers.

Best of luck to you....hang in there!