Do i have ALS or BFS? Please help

[anxious06]

First of all, Kudos to everybody on this website. I would like to share my symptoms and hopefully you guys could enlighten me on my condition. I'll try my best to be very detailed as possible

1.) Symptoms start on 07/19/2012. Visible twitching on left biceps area. Went on for a couple of days. Frequency is like 20-30x a day. Same site.
2.) 7/24/2012. Started to get irritated. Asked Dr Google for help. Result: ALS. Freaked me out
3.) 08/05/2012. Visible Twitching on my (L)quads.
4.) 08/08/2012. Twitching everywhere. Upper eyelid, butt, right biceps, left and right quads, abdomen, popliteal area, right/left foot....etc. By the way, twitchings vary. Some very fine, some strong
5.) Its been one month and still no clinical weakness( Im a Physical Therapist). But I guess you become irrational and cannot think right if it is you yourself that you are trying to diagnose.
6.) I still have twitches as of today.

other symptoms
1.) of course, I do mmt on specific muscles and after that my muscle feels sore. Also my left arm feels tired and "dead"
2.) the past few days, feel "buzzing" feelings in my arms and legs
3.) sometimes i wake up with twitching on a specific muscle group. Different each time
4.) I feel that my quads feel weak while im walking

Hope you could answer the following questions

1.) is it likely ALS or BFS?
2.) If twitching is the first sign of ALS, how long before you experience clinical weakness?
3.) How long before I can definitely say that this is BFS and not ALS if my symptoms dont change (wont have clinical weakness)? 2 months? 3 months? or longer?


thanks everybody,

very anxious06

 

[ottawa girl]

Have you been checked by a doctor?

 

[hjlindley]

Please for your own peace of mind see a physician. I suffered weakness and atrophy long before the twitches. Every case is different but Dr. Google is often wrong. A board-certified neurologist is the only person who can help you. Please also note that anxiety can cause benign twitches. Good luck to you and I hope you're not a member of our club.

 

[anxious06]

Nope. I try to hold it off until i see signs of clinical weakness. What do you guys think? Hope somebody can enlighten me on my symptoms. A short note be it advice/personal experience/... etc.. i would really appreciate. thanks a lot

 

[KrisS]

You really need to see your doctor and will probably have to go to a neurologist too. For my husband the weakness came on much slower than you would really notice in one month (it took many months before he could say for sure he was weaker.) Please don't wait. An early diagnosis, which may not be easy to get, could benefit you a lot. Bottom line...See a doc.

 

[panguinjen]

We are not doctors, go to one please. ALS muscles twitch long after weakness sets in. One month is not enough time...it took over a year for us to get a diagnosis only because I pushed the doctors... It's this disease only after everything else has been ruled out.... You have a lot more exploring to do before worrying about this.

Jen

 

[anxious06]

I appreciate everybody that responded. Yes. I would definitely go to a specialist. But for now, I just would like to have some insights/words of wisdom/ experiences from you guys. Before I registered, I have been browsing this wonderful website and was blown away on the support each and every person gives to one another. So It gave me an idea to ask you guys on a personal level about this disease. Thanks very much. Any comments good/bad/neutral would be much appreciated

 

[Bliz]

Generalized fasciculations rarely herald ALS, yet there are cases...
But much more likely its BFS - I have twitching for 5 years, all over and I do get hot spots like few days ago when my left tricepts went crazy. I am still affraid of MND of some sort but most likely its something not known yet..and benign.

 

[ottawa girl]

I appreciate everybody that responded. Yes. I would definitely go to a specialist. But for now, I just would like to have some insights/words of wisdom/ experiences from you guys. Before I registered, I have been browsing this wonderful website and was blown away on the support each and every person gives to one another. So It gave me an idea to ask you guys on a personal level about this disease. Thanks very much. Any comments good/bad/neutral would be much appreciated

We are a supportive bunch to be sure - while you may be blown away by that - I am blown away as to why a professional in the medical field, such as yourself, is more interested in hearing anecdotal accounts from us who are suffering from this hideous disease (be we PALS or CALS), then actually going to the Doctor.

Words of wisdom?: "Go to the Doctor" Do let us know the outcome. We'll be thrilled to hear good news and send you on you way! But what you're asking for will not serve you well and more significantly, many good folks here who are spending time writing to you, do so under extraordinarily difficult circumstances.

 

[anxious06]

I guess I get irrational if I'm the one involved.. Haha. No other reason

 

[ktmj]

From experience, let me advise you that seeking "twitch" help here will only feed your anxiety. Every question you ask, every "answer" you get, will never reduce your anxiety.

I can't tell you what it is but it sounds like BFS - my body-wide fascics started one night in 1989. And I am one of the ones where they have pretty much continued my whole life. Don't focus on the worst-case scenario - focus on what it most likely is - BFS.

 

[panguinjen]

As I have said before to another poster with the same question: I don't know you well enough to share my details. This is a painful process for us and many who answer you may be using their eyes to type, one finger, a stylus held in their mouth and you want our stories because you are curious? How are you going to help? Do you do the ALS walk?, volunteer with the ALSA, have you watched your spouse slowly die in front of you?

Jen

 

[kiwisally]

First of all, Kudos to you anxious06, you have managed to upset a lovely woman with just 4 posts (and I am not talking about myself!).
I would like to share my view on how you did so and hopefully you will be enlighten.
I'll try my best to be very detailed as possible and use the ( and the ) keys more times than I have ever dreamed (possible).

1.) Yesterday you posted a long description of your Symptoms which started on 07/19/2012.
2.) You actually put the days down for when your symptoms started. My guess is you could put the hours down as well. RED FLAG
3.) People started to get irritated but some took the time to reply.
4.) People pointed out that the logical thing to do was to go to the doctor. (You haven't!)
5.) Rather than (go to the doctor) you just reiterate what you want from us. Despite the fact that several people have told you that our best advice is to go to a doctor.
6.) Its been two days and still no advice other than see a doctor and a reference to anxiety which you clearly have in addition to whatever else is going on. ( I'm not a doctor). But I guess you have become irrational and cannot think right as you yourself are trying to diagnose. We have more sense than to try and do that so we tell you to (go see a doctor).
7. ) Clearly your first rational step would be to go see a doctor and not continue with this folly.

other suggestions
1.) Go see a doctor.
2.) Go see a doctor.
3.) Go see a doctor.
4.) Go see a doctor.

Hope you understand the answers to all of your (future) questions are and will be.

1.) Go see a doctor.
2.) Go see a doctor.
3.) Go see a doctor.
4.) Go see a doctor.


thanks very much you are indeed very.........(anxious)06

 

[anxious06]

jen,

it seem like I struck a wrong chord on you. Im sorry. Its not just because Im curious. As what I've said in my first post, Im terrified with the uncertainties right now. I came here and posted here because I was wishing people who had first hand knowledge and I could learn a little bit. I apologize if my posting here looks like im just wasting peoples time.. As a person working in the Home Health field, I know what patients and families of patients are undergoing. I see it everyday. so please give me the benefit of the doubt, at least. If anybody thinks Im wasting your time, its ok not to answer my post. Again, im sorry for the misunderstanding

 

[kiwisally]

anx, there is no misunderstanding on anyone's part here, it's perfectly clear.