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First time poster - Worried!!

PostPosted: September 24th, 2014, 12:53 pm
by bdavis14
Hi All,

I am a 40 year old male. In June of last year, i began having fascics in my calves. Noticed them while on my mower cutting grass. Just a weird feeling that caught me off guard. We had been out with friends the night before so i assumed it was from dehydration and didn't give it another thought.

Coincidentally, my mother had recently passed a few weeks before. She had suffered from 2 major strokes in 2010 which left her completely paralyzed on one side with speaking and swallowing difficulties. Sounds not related until Hospice was called in one week prior to her passing and us finding out that she had been diagnosed at some point after the strokes with A**. Take note that her husband was taking care of her until March of the same year until he passed away. Then my sister took over. Point being, we were all surprised to find out from the Hospice nurse that my mother had been diagnosed. The only logical conclusions are that it was a mistake in her file (would have to be a huge one) or that her husband was told and didn't tell the family. The diagnosis seems odd to me considering she was wheel chair and bed bound since the strokes and that her swallowing and speach were severly compromised from the strokes. She went through rehab many times and was clearly progressively deteriorating. Once i heard about the diagnosis, i began to research the disease. You can imagine what the did once fasciculations popped up on the screen. My calf fascics went into full-blown fascics over every sqaure inch of my body, much like i have read in the stickys.

Here it is 15 months later and i am still having fascics that wax and wane all over my body. My calves are pretty much 24/7 and the others come and go. In addition, i have stiffness in my legs (primarily hamstrings) that is made worse by minimal excercise and just plain won't go away some days. Neck is stiff all the time and have random pain / stiffness in my core (ribs front and back). I have pain in my hips and my legs feel rubbery some days. In addition, I am pretty fatigued most of the time. I can get through the day but it can be a challenge with a stressful job, 2 kids and all the other things we all deal with. And there is no doubt that i have bouts of anxiety from time to time wondering about all these symptoms.

In November of last year, I was diagnosed with BCFS by a respectable Neuro. EMG and NC tests were clean. She also did some fairly extensive blood work to rule out other things. My CPK levels were at the top of the acceptable range but was the only finding. Because my symptoms haven't improved and now I've had some difficulty swallowing (food goes down but feels restricted; may be from anxiety but happens when i don't feel anxious) she has scheduled me for more tests. I am repeating the EMG and Nerve Conduction tests, more blood work (to include familial A** testing) and now a muscle biopsy which i am not sure i want to go through with.

I have always been an athlete and worked out. I am still going to the gym and fairly strong for my age. I do see a quick decline and loss of tone if I miss much gym time. Therefore, I try not to miss. I have been able to increase strength on many of my excercises.

So why all this? Looking for feedback from folks who have been through a similar situation minus my mom's alleged condition. Has anyone encounterd swallowing problems associated with BFS or BCFS? How about the pain and stiffness in the legs / hips? Common? The fascics themsleves don't concern me that much as i know that happens to lots of healty people. It's the other stuff that concerns me. Hoping for positive test results to ease my mind.

Sorry for being long-winded. Wanted to give the details first time around and I promise I won't do it again!!

Thanks
Brian

Re: First time poster - Worried!!

PostPosted: September 24th, 2014, 1:44 pm
by emmie.s
Hi Brian,
As a poster and lurker who has been on this board for about 7 years, I would say that none of the symptoms you have posted are uncommon. The fact that you've been twitching for so long and are you are still strong are in your favor. As is the fact that you have already been given a benign diagnosis after a clean EMG. The hyperexcitabily phase of ALS rarely lasts longer than several months.
You mention you have difficulty swallowing; if you are implying that you are worried about bulbar onset, keep in mind that is the most aggressive form of ALS and that you would KNOW (meaning you would know right away and there would be no second guessing) that something was wrong. I too have had swallowing issues, but thankfully they went away, when the anxiety decreased. Perhaps do a search here to see how many people complain of swallowing problems.
As for the stiffness, if you haven't already been tested for autoimmune diseases, maybe look into it. Also, know that it is a common complaint here, especially among BCFS members.
Take care and keep us updated on your testing!

Re: First time poster - Worried!!

PostPosted: September 24th, 2014, 1:45 pm
by misterjuanperalta
I have difficulty swallowing, but it's suspected to be from CPAP side effects. Anxiety can't be ruled out and is not always obvious. Fascics started in my legs and then spread, along with some dull pain that can be brief and temporary. I have polyneuropathy, as per my neurologist's impression. I'm not 100% certain it's related to the twitching. All EMG tests have been normal for me. If any or all of your symptoms come and go, then ALS could be ruled out. It's a waiting game. Good luck and please post updates and neurologist feedback. Regards.

Re: First time poster - Worried!!

PostPosted: September 24th, 2014, 2:12 pm
by Yuliasir
Hi
most probable case of swallow difficulties of the type you describe is GERD, which often follws significant stress. Stress affects your autonomous nerve system, causing vagal nerve hyperexcitiation among other effects. This nerve controls acid production in the stomach, guts and esophagus peristaltics, and also causes reflectory edema of throat and spasms in the esophagus causing feeling like food is stuck in the esophagus.
This usually goes away by itself, and only in more severe cases needs antacide treatment for a while.

Re: First time poster - Worried!!

PostPosted: September 24th, 2014, 4:37 pm
by Bibi
emmie.s wrote:Hi Brian,
As a poster and lurker who has been on this board for about 7 years, I would say that none of the symptoms you have posted are uncommon. The fact that you've been twitching for so long and are you are still strong are in your favor. As is the fact that you have already been given a benign diagnosis after a clean EMG. The hyperexcitabily phase of ALS rarely lasts longer than several months.
You mention you have difficulty swallowing; if you are implying that you are worried about bulbar onset, keep in mind that is the most aggressive form of ALS and that you would KNOW (meaning you would know right away and there would be no second guessing) that something was wrong. I too have had swallowing issues, but thankfully they went away, when the anxiety decreased. Perhaps do a search here to see how many people complain of swallowing problems.
As for the stiffness, if you haven't already been tested for autoimmune diseases, maybe look into it. Also, know that it is a common complaint here, especially among BCFS members.
Take care and keep us updated on your testing!


What is hyperexitabily phase of ALS ? If you do an EMG in this phase , Would it Pick up something bad ?

Re: First time poster - Worried!!

PostPosted: September 24th, 2014, 4:40 pm
by RGB
I'll be brief... :) ...


bdavis14 wrote: In addition, i have stiffness in my legs (primarily hamstrings) that is made worse by minimal excercise and just plain won't go away some days.


Yes, exactly same here.

bdavis14 wrote:I've had some difficulty swallowing (food goes down but feels restricted; may be from anxiety but happens when i don't feel anxious)


Ditto

Some (wonderful!) people here will attribute a whole bunch of symptoms to BFS but in reality it is probably very difficult to tell what is BFS and what is caused by anxiety etc. The important fact though is that your neuro has failed to find ANYTHING of concern and the time-line further suggests that the chance of this being anything sinister is vanishingly small.

RGB

Re: First time poster - Worried!!

PostPosted: September 24th, 2014, 11:34 pm
by Yuliasir
Bibi,
scientists consider that before neurons in the brain wiil die from whatever factor causing ALS, there is a short period of hyperactivity. Of course this would be seen on EMG. Anyway, people with BFS live years with this hyperactivy, they just have overactive nerve system. Pathologivcal hyperactivity lasts just a few weeks and results in paralysis or paresis finally.
Definitely not your case as you may see.


RGB, looks like anxiety is quite a part of BFS, do not know if it is due to the fact that overactive CNS of anxious people finally causes them to twitch or unknown agent causing BFS results in overactive CNS... but people report anxiety and related changes in criticality etc. almost in every case I had seen here.
That is why 'pure' BFS is so 'rare' :)))

Re: First time poster - Worried!!

PostPosted: September 25th, 2014, 12:27 pm
by emmie.s
Yuliasir wrote:Bibi,
scientists consider that before neurons in the brain wiil die from whatever factor causing ALS, there is a short period of hyperactivity. Of course this would be seen on EMG. Anyway, people with BFS live years with this hyperactivy, they just have overactive nerve system. Pathologivcal hyperactivity lasts just a few weeks and results in paralysis or paresis finally.
Definitely not your case as you may see.

Yuliasir is a saint, thank you for explaining that so well. So sorry if I alarmed you Bibi, I should've explained better.

Re: First time poster - Worried!!

PostPosted: September 25th, 2014, 3:00 pm
by Bibi
Yuliasir wrote:Bibi,
scientists consider that before neurons in the brain wiil die from whatever factor causing ALS, there is a short period of hyperactivity. Of course this would be seen on EMG. Anyway, people with BFS live years with this hyperactivy, they just have overactive nerve system. Pathologivcal hyperactivity lasts just a few weeks and results in paralysis or paresis finally.
Definitely not your case as you may see.
Thank You ! You are always so Quick responding and explaining things :) i really try to Calm Down after my EMG but as so Many others here , i have The fear that it is still hidden . I have A lot Twitches in my back now and have some trouble with speech , have to clear my throath and Think it is hard to sing loud. Would an EMG in my left leg and arm have picked up if ALS was anywhere in my body ? Sorry to hijack this post !
Bibi


RGB, looks like anxiety is quite a part of BFS, do not know if it is due to the fact that overactive CNS of anxious people finally causes them to twitch or unknown agent causing BFS results in overactive CNS... but people report anxiety and related changes in criticality etc. almost in every case I had seen here.
That is why 'pure' BFS is so 'rare' :)))