fasciculations

marywest45 · 08-13-2009, 08:20 PM

I recently got diagnosed with ALS. No UMN signs, EMG finding in all limbs and along the spine.
I was so unprepared for this and didn't ask my doctor about the fasciculations; in my case they so widespread.
I read somewhere on Internet that widespread fascics is a sign of rapid progression.
Is that true?
Mary

hopingforcure · 08-13-2009, 08:27 PM

Hi, welcome to the forum. You must have some UMN symptoms, or you would not have received the ALS dx. Mayve you just were not aware of them. I do not agree that wide spread fasics are a sign of quicker progression. Do not worry, that is not necessarily the case at all.

BethU · 08-13-2009, 08:47 PM

Mary ... I'm so sorry for your diagnosis. Welcome to our group, but I hate that you had to seek us out.

I don't believe that widespread fascics indicate anything at all. Usually, limb onset has slower progression than bulbar, so that's something in your favor. Be careful of stuff you read on the Internet (including here; we are mostly a bunch of caregivers and patients giving each other support ... not medical professionals).

Have you contacted ALSA in your area? They are a great organization and can give you a lot of guidance in handling this.

Take care.

Zaphoon · 08-13-2009, 09:20 PM

Mary,

I am curious about you're not having any UMN signs/symptoms. I'm guessing you haven't had any spasticity, cramping or hyperreflexia.

As previously stated, without UMN involvement, you cannot have ALS as it is the only motor neuron disease to involve both upper and lower motor neurons.

Could you please elaborate on your diagnosis for us?

Zaphoon

marywest45 · 08-14-2009, 12:12 PM

Hi again,
I asked the same question, and was told that ALS diag

marywest45 · 08-14-2009, 12:14 PM

Sorry, my computer went dead and I couldn't finish the previous post.
So, I was told that by diagnosis was based on denervation in 3 limbs and paraspanal muscles of the trunk.

hopingforcure · 08-14-2009, 06:10 PM

Mary,
The Emg only shows lower motor neuron problems, but maybe the doc saw umn problems in the exam, but did not mention them.. Sometimes they place things in notes and not verbally. Where were you dx.? Welcome also

Al · 08-15-2009, 12:01 PM

Some docs will give a probable ALS DX if LMN are present and he see's other markers. Mine did. I had fasics all over at my 2,3,4,5 opinions. I still have some 6 years later.

AL.

marywest45 · 08-15-2009, 12:50 PM

Al, did you have all over fasciculations at the time of diagnosis?
I have them all over.... I read somewhere that is't a sign of rapid progression. Is that true?
I was diagnosed by my neuro at Sinai in Baltimore and confirmed by Dr. at Hopkins.
Doctor only mentioned finding weakness on exam, rest of the finding came from EMG.
Unless, they didn't mention the other important signs to me. Should I request my medical records or just wait until my next appointment.
I have a lot of exessive saliva that I forgot to mention to Dr.at Hopkins. Any suggestions?

BethU · 08-15-2009, 01:18 PM

Mary ... I have them send me copies of all their reports. Might as well request it now, as sometimes what we remember hearing is not what they have in their written report, and it's interesting to read.

Your doctor can help with the excess saliva, so if it's bothersome, you might want to ask about a prescription. If it's not too bad, mention it at your next visit.

Take care.

halfin · 08-15-2009, 01:51 PM

Hi Mary, welcome to the forum. I too was diagnosed recently. Like a lot of us, I have the all over fasciculations, several per second in each limb, but mine are generally very gentle and not bothersome. It has only been about 4 months since I first noticed symptoms, but I have not had much progression. So hopefully it will remain slow.

I also was unclear about the UMN situation. I asked my doctor about that specifically at the ALS clinic on Thursday. He looked me over again and said that I had mild UMN signs. My reflexes are a little strong, or as they say "brisk". Scraping the bottom of my foot was kind of ambiguous. I forget how it is, but normally the toes go one way, with UMN damage they go the other way; mine kind of wanted to go both ways. So he felt like he was seeing some possible issues. But I gathered that the diagnosis was largely based on EMG, and in particular about an apparent worsening of EMG readings over a few months.

Oddly my limb strength still seems good, even though the EMG shows nerve damage. Sometimes I think the nerves can die but be taken over by other nerves, up to a point; so you don't lose strength until the process is well established. It's scary to think of this happening but I am just trying to appreciate and treasure every time I go out and am able to move around freely.

With the saliva, they told me that you don't actually produce any more saliva than usual, rather you are not swallowing it normally. At the ALS clinic the speech therapist gave us a lot of good advice about eating and swallowing, so if you have problems in those areas, an ALS aware speech therapist may be able to help you.

Al · 08-15-2009, 02:16 PM

Hi Mary. I think I had fasics in both calves at primary dx. Over the next year and a half or so, they were pretty well everywhere. Just recently in face/neck though.

AL.

marywest45 · 08-15-2009, 09:37 PM

Hi Hal,
Where you diagnosed with Limb onset or bulbar?
I'm still confused with which one is my. I weakness/atrophy in my arm, but also a lot of saliva and throat clearing coughing after eating.
I was so overwhelmed at time of diagnosis, that I didn't ask all right questions.
Mary.

BarryG · 08-15-2009, 10:28 PM

Mary, I would say that you are limb onset if your weakness/atrophy is in your arm. Bulbar starts with slurred speech and then moves to swallowing, saliva and throat clearing issues later. It is a very overwhelming thing to hear sorry that you had to hear it.