Question on fasciculations

tag0620 · 05-07-2009, 06:04 PM

So we're working on our timeline and I have a question on fasciculations associated with als.

Jim's fasciculations in his legs would be expected given the atrophy from walking around with a broken back for a year and a half.

My qustion is...in Dr. notes from late Oct...he noted no fasciclations in Jim's upper body.

He was put on a cycle of methylprednisone to check for autoimmune dissorders...it made him very weak and very ill

We then went in within 2 weeks and he was diagnosed with limb onset als.

Almost immediately...he had diffuse widespread fasciculations (BAM as Emiril would say) all over his body but very strong in his upper arms (biceps/triceps/shoulders).

Is there any type of consistant way these things come on...or could this possibly be related to the methylprednisone or stress or both? OH...and he started on anabolic steroids at this point as well...(or BFS?)

I just wanted to see if this sounded consistant with als that one day he didn't have them....then one day THEY WERE THERE?!?!

Thanks,
Tracy

BethU · 05-07-2009, 06:46 PM

Tracy ... I don't know enough about medicine to make an informed reply, but I never let that stop me.

There's no reason why someone could not have two different things going on at the same time. So the fasics could be stress from the physical stuff he's going through plus the stress of a dx of ALS ... or it could be reaction to some of the meds ... or it could be related to his primary condition, whatever that turns out to be.

But ... if you're doing a timeline, I would include it. Your doctors may agree or disagree about whether it's connected, but I would list all symptoms, for your own record-keeping if nothing else. The timeline is a very smart thing to do.

tag0620 · 05-07-2009, 07:15 PM

Thanks Beth...but I was kind of trying to see how fascics usually present with als (and yes, I know that everyone is different)...but do they "normally" come on all at once...or would they "normally" progress as the disease progresses throughout the body?

I just didn't know if there is a "classic" way that fasciculations present if that makes sense....

The timeline has been written for a while...and has been repeated about...hmmm...I lost count haha. It's been the one thing that keeps them thinking as this all started with the ski accident and presented before his fusion surgery...all but these instantanious fasciculations.

tag0620 · 05-07-2009, 07:50 PM

also..would they present in an area that has absolutely no weakness or atrophy.

Do they "usually" present AFTER the muscle would start to die? Thus there would most likely be weakness or atrophy first?

Sorry...I'm just still trying to put the puzzle pieces together and this is just one of those "odd" things...

BethU · 05-07-2009, 08:28 PM

It's my understanding that fasics are an end stage of the muscle. They do not appear in a healthy muscle in ALS, only in BFS. First come weakness and atrophy, then come fasics as the muscle struggles to keep functioning.

Hopefully, someone with more authority on the subject will respond.

Speechless in L.A.

tag0620 · 05-07-2009, 08:40 PM

Thank you Beth!! Even though you always give the "disclaimer", please know how much I value how you (and others) share your personal experience with compassion and candor...just didn't want to let that go unsaid.

That at least makes me feel better as his extreme upper body fasciculations are there with neither weakness nor atrophy in that part of his body (It has all still remained below the waist) and that was my understanding as well.

If anyone else has any other insight on this...I'd appreciate it!

Thanks,
Tracy

joelc · 05-07-2009, 08:49 PM

This is a hard question. Fasics happen in healthy people and sick people and cannot be used as an indication of anything. I had fasics all my life but never paid any attention to them until I had ALS. They come and go and have nothing to do with atrophy. I have not noticed any connection. If I am more tired or stressed they are worse, but they can be anywhere on my body. Just my experience with them.

planningguy · 05-08-2009, 06:52 PM

If anyone has any good information about prednisone I would be interested to hear it.

The reason I ask is Tracy's question reminds me of something that has always bugged me. Sometime after my blood infection, I went out on a trip to see my brother with a really bad sinus cold I couldn't shake (bright phlegm, neck and body soreness, cough). I was already experiencing some of my other symptoms, but I had been wrestling with this for about a month.

My brother prescribed a couple of comfort meds, but he also prescribed prednisone. I don't remember the doseage, but I took it for about a week. I didn't think anything of it at the time, but my symptoms seemed to pick up the pace around that time. It wasn't until later when I learned that it was used to treat some autoimmune conditions, and can have complications. It could be just coincidence, but it bugs all the same.

Take care,

Robert

wheeler641 · 05-08-2009, 07:58 PM

robert, I have been taking prednisone for a while now, in doses of up to 30mg a day for what the rheumy tells me is polymyalgia rheumatica. I start at a 30 mg dose and work my way down to 10 mg a day(a maintainence dose) the when it flares up again(my sed rate increases to around 150} I start all over again. I have been doing this for about 6 months now and do not seem to be having any adverse reactions to it. I just have the usual nervousnes and heart pounding and difficult to sleep when I am on a high dose but it beats having every muscle in my body hurt and feeling like I have been hit by a Mack truck. I was getting the twitching and the muscle cramps in my legs long before I started on the prednisone, if anything it has helped me a lot. I have been told I might have to be on it for the rest of my life. Hope this helps, Margaret

Danijela · 05-09-2009, 01:59 AM

Hi,

my partner has fascis in different parts of his body, but atrophy only in his upper limb. He gets fascis in his legs and abdomen where there is no weakness or atrophy yet. They are most prominent and more constant in the atrophied limb. They don't seem to come and go, something is always twitching.

I have read that they mean very little on their own. I think the phrase used was that what matters is the "company they keep" (i.e. weakness and/or atrophy). The other often used phrase is "fasciculations in clinically unaffected limbs" (those without weakness and atrophy) which is used to support the diagnosis (they are looking for the signs of dennervation and reinnervation in 3 areas).

mare · 05-09-2009, 07:54 AM

My husband did not even realize he had fasiculations; they were noted by the neurologist in his arms, legs, and tongue.
At that time he had weakness and atrophy in his legs (although still doing his same weight-lifting workout); he had no atrophy or weakness in his arms, back or shoulders!

laurel · 05-09-2009, 01:47 PM

Robert,
I wouldn't worry in the least about the Prednisone that you took for one week being a culprit. It can be a real miracle drug for many conditions including some types of CIDP. Indeed there are some pretty bad side effects from long term use such as cataracts, elevated blood sugar, bone loss. But over a one week period, it would not harm you at all. With some of the CIDP variants and with MMN it can cause major weakness so often they can narrow down whether it is CIDP or MMN if a person gets sudden weakness after being prescribed a corticosteroid. But in the world of drugs for short term use it is very safe.
Laurel

brooksea · 05-09-2009, 03:25 PM

Tracy,

I can only relay to you what happened with my husband.

He had the fasciculations before weakness and atrophy in his hands and arms. They started in the left hand and over the course of months went up his left arm then to right hand and arm, then shoulders. This was over the course of months - even years, not all of a sudden!

Of course I'm no doc, but sounds like maybe a side effect of the medicine.

I really hope you can find the solution to your husband's plight! You go girl! I admire your strength!