33-Year-Old Experiencing BFS Symptoms

[Fr78z2zFR]

Hello!I'm a 33 year old woman from Emilyomousey.I noticed my first BFS (if it really is BFS) symptoms in october when my eyelid began twitching. The twitching got worse and my other eyelid began twitching too, about 10-20 times/hour. I got worried because this just wouldn't stop so I asked dr. google (WORST mistake of my life) and I read about ALS and got scared to death! I thought I was gonna die. Suddenly I noticed twitches ALL over my body. My fingers, arms, feet etc. began twitching quite frequently - not as persistent as the eyelid twitch but those twitches really scared the *beep* out of me. I went to a general physician who sent me to the neurologist the same day. The neuro did the clinical exam, told me that she can rule out ALS (no EMG at this point though) and told me to get an MRI to rule out MS. I then worried about MS until the MRI came back normal.A couple of weeks later my arm began twitching NONSTOP for about 6 hours. I had a panic attack and went to a different neurologist. I told him about my fear (he said that he has had quite a few ALS patients) and he also did a clinical exam and an EMG just to calm me down. He only stuck the needle in my arm though. He said that I have healthy muscles and that he would prescribe me antidepressants if I can't shake this fear.I actually managed to focus on other things and "forget" about ALS for a couple of weeks after that (this was in february). A couple of weeks ago my fingers (thumb, pinkie) began twitching too. My hand (the muscle underneath my thumb) twitched for an entire day. Now this was a different kind of twitch. It was kind of slow and wouldn't go away til the next day.I now begin to notice some weakness in my arms. I'm not sure if this is perceived weakness as I can still lift wooden tables and such. Sometimes my arms do feel "weak" though. I also notice current cramping in my toes.A couple of day ago I read some stuff on the ALS forums and a lot of ALSlers did say that the twitching started before weakness/atrophy. Needless to say, I am now again scared to death.I think I could cope with the twitching (actually the eyelid twitches are almost gone) but this weakness/cramping is driving me crazy.I'm just hoping to find people on here who have gone through the same thing and can calm me down a little. I am twitching as we speak, I'm always tired and I feel depressed.This BFS sh** sucks. But ALS would me much worse, I actually think there is nothing worse than ALS.What do you people think?

 

[christinasgirl123]

Hi, what I think? Sounds like a mild case of BFS. Sit down here and take a cup of coffee or tea and wait for the surprise package that BFS might offer to you..perceived weakness in my arms I had for months, I culd not lift my arms without a burning pain, and toe cramps I had hundrets.

 

[Gracer]

Hi dear, up to now your picture fits BFS very well, unlike the ALS. I also started in October last year also with ocular twitch, then widespread twitches, including thenar (that muscle beneath the thumb), then perceived weakness in the arms and legs, then throat issues due to GERD, all that pretty clear BFS picture.I do not read a lot of ALS forums, but all Russian (I am from Ukraine) forums I tried in my own ALS fears period and people who report here their ALS relatives stories mention that typical onset of ALS is still severe and sudden weakness. Like "My dad could not pick up a fishing hook", 'he was playing golf and just can not move a hand", or "my husband was digging a lawn and can not take a hand off the shovel", or even "I took the scissors and foumd I can not move them". Those who had lower limbs onset report sudden fallings, etc. I mean WE ALL TWITCH, so ALS people also could twitch before onset just because the twitching is generally nothing specific and nothing special, but differentiating onset symptom is anyway weakness.perceived weakness happens to us due to a) the fact that twitching is a movement, and our muscels are really tired b) because our muscles are hyperexcited and can tolerate much less load than in healthy person. Your feeleings might be so prominent that you could not hold a phone or a fork, but it still comes and wanes, and that is a difference.by the way for me antidepressants were very useful but they increaesd twitches a lot. I start to feel better in terms of twitching only after discontinuing my rexetin, and only in two month after it I can feel more or less 'normal' (however still twitching daily everywhere).Cramps are very, very common for BFS. And I had cramps for years even before BFS, and still have no significant damage in my legs or othre muscles.I can tell that for me the most valuable cure was my speaking therapist - in the period of severe fears, antidepressants, despite on the side effects, and regular hours. The last was very, very important. I lost that item few weeks ago, when my daughter started to work late hours... and boom! in few weeks I got a flareup again...try to consider the following inportant things:you are too young for ALS in 33your EMG was cleanFor 8 month you have typical BFS picture, and it is developing like BFS 100%, while MNDs are usually known for their 'strong grip' - symptoms start suddenly, never release and get only worseresulting in complete disability in a short time.try also to drink more water, as in hot summer cramps might be caused just by dehydration... I usually manage them in that way pretty well.Do not worry, try to get deep peace of mind using waterver method you prefer, and in a few month you would be much, much better.best wishesYulia

 

[Fr78z2zFR]

Hallo!Thanks for your replies!I know you are right yulia. It's just that every time I notice a new "symptom", I freak out. I guess I'll just have to learn how to deal with this ... a big part of it is to NOT browse ALS sites on the net and not obsess about this disease so much. It's very hard though.Just hoping this is not a very early stage of ALS. The other day I read that there might be a link between ALS and stress. Now this completely freaked me out b/c I am stressed out most of the time (being a working mom is not always easy). Does anyone actually believe this? Anxiety causes ALS?

 

[Gracer]

you know, there is stress adn, well, stress...I mean I knew a girl who got MS (not ALS, by the way) after her mother died suddenly. But that girl also had a scary teenage period, was on heavy drugs for a while and was generally very hystrionic by nature etc. So amount of stress - physical and mental - should be quite big to be a trigger even to MS, and as for ALS, which grasps people usually in their 50-s - 60-s... I am not sure that it is a real trigger. Stress might cause widespread twitches, and then some people develope ALS independently of that fact, so it might be a realtion like that, but the very nature of ALS (which is unknow, but involving both brain and lower motor neurons) seems not to be of inflammatory origin (othervise interferone would be as helpful as in MS), so probably ALS is NOT physically stress related. I say that because all what we know for stress related diseases involves inflammation (gastric diseases, autoimmune inflammatory diseases etc.), because stress released hormones are also part of natural inflammatory mechanism.For sure, relatively mild and constant (in my case for over 30 years) daily stress (I mean something which is plus to normal stress level a human being might expect - e.g., stress caused by phobia, OCD, GAD etc.) could cause BFS. That is for sure. But not ALS. And look, BFS strikes maybe every 1000-th in population or so, while ALS has 100 times less occurence (AFAIK).

 

[Gracer]

and I can tell being a working mom is stressful enough to cause BFS. I can advise you only to quit ALS sites as soon as possible and read this one forum, espeecially 'BFS in a nutshell' and stories of members like Chrissy and SuzyQ (two persons who barely could walk and eat due to BFS and idea they are deadly ill - and recovered soon after understanding that this is not so). ALS sites would not give you any hope and would be just a source of new fears, while on this site you could see that all your symptomes are completely benign. yes we have members who developed autoimmune diseases on the BFS background, like Isaaak syndrome etc., but this is still not ALS and not MS or PD.By the way, I have seen many people like we BFSers on the ALS-related forums in Russian net, and the neurologists moderating those forums were sometimes very straight in getting them out of the forum because their symptomes do not match the picture and need psychiatric (anitnaxiety) treatment.