confusing symptoms - is it ALS?

[nursevictoria]

I am 21 year old female. Was very active prior to symptom onset. Here is my story.

Week of March 14. Noticed electrical feeling in legs after exercising.
Few days later. Limb jerks and twitches all over body(Face, chest, abs, back, shoulders, legs, "down there", butt, lips, thighs, feet..everywhere) Buzzes, thumps, long twitches, pops, vibrations..
Burning pain in left thigh only while at rest. Went away 2 weeks later.
Symptoms persisted, went to neuro and had a clinical Apr 14. Clean clinical exam, except for clonus on left ankle and hyperreflexia. NO WEAKNESS. Tongue twitching, wave-like*
Symptoms persisted. had an EMG performed.(Fri may 4) on both legs and both arms. facsiculations on every muscle EMGed, along with a few peaked waves(sharp waves?) nerve conduction study revealed hyperactive muscle activity. My neuro saw it fit to send me to an ALS specialist in our area because of my symptoms. (no appointment yet)
The only odd thing I have had is an awkward feeling in my right arm. comes and goes. sometimes feels like 'jelly' and uncoordinated. Have had that since the beginning.

I have no voluntary muscle impairment, no clinical weakness.. I can walk and talk and breath normally. I can run. I can dance. I can do push ups.

Is this early ALS? I am very confused about what is going on here? ANY help would be appreciated.

 

[Ms. Pie]

It doesn't sound like ALS to me. Wish I could help you out but I cannot. Let us know what your next Neuro says. ALS comes and stays and progresses. Doesn't ever come and go. No tingling, no body wide twitching or jerking. No vibrations, no buzzing, no twitching down there. I hope that what ever is bothering you is easily treated and fixed. Good luck! Make that appointment and let's get you fixed.

 

[Alyoop]

Seems way too soon to be talking about ALS. Have you had an MRI to rule out MS?
In my limited experience, it does not sound anything like the onset of ALS and I am confused as to why you have a referral in that direction.
I am not a Doctor, but I would be asking a heap of questions of my neurologist right NOW.

 

[nursevictoria]

I have an appointment for an MRI on the 14th. Cervical and thoracic spine. with and w/o contrast. No MRI of the brain has been ordered yet. but I will request one.

 

[Alyoop]

The MRI is very important to rule out MS, especially as you has intense sensory symptoms that remitted after a time.
A brain MRI, probably not so important.

ALS does not usually cause sensory symptoms and the presenting symptom is almost always fairly dramatic weakness. This weakness usually is bad enough to affect ADL, such as buttoning buttons, opening jars, or foot drop.

The fact that you have no clinical weakness, is very encouraging.

Body wide twitching is also a factor against you having ALS. Most Pals do not present with fasciculations, but they are discovered during the clinical examination.

All good things

Sorry for my short post before, family suddenly called.

Aly

 

[nursevictoria]

Thank you so much for your response. My symptoms are very confused and point in lots of directions. I just want to get to the bottom of this, and begin treatment- if there is any!

 

[hopesprings]

Hi Victoria. Your symptoms sound super similar to mine, although I haven't had an EMG and I had that burning feeling my left arm instead of my leg and I've been dealing with this since early February. The sudden jerks are the oddest part for me. I was sitting down watching tv this week and my left shoulder just bounced straight up once. Nowhere have I seen this as a symptom of ALS but clearly my nervous system is firing like crazy as well!

Do you have an appointment scheduled with the specialist? I'm really keen to hear how it works out for you. Also, what did the doctor say anything about what causes hyperactive muscle activity? I've not heard about that before. About the hyperreflexia, it's my understanding that the younger you are, the more hyperreflexive you are and it's more common amongst younger people to have quick reflexes than if you were 40 or 50.

Have you visited an osteopath or a chiropractor at all to get relief? If this issue came on during exercise then perhaps you've pinched a nerve or messed up something in your back/spine? Just a thought.

Also, did your doctor or neuro mention Benign Fasciculations Syndrome (BFS)? Check out aboutbfs.com, might be helpful to you. My GP mentioned BFS and a lot of what I've experienced since to correlate closely with that - they (we?) get the jerks and the tingling and the numbness and all that. It's my understanding that a traumatic experience or injury can cause fasciculations as it sends your nervous system into overdrive. If it helps, my fasciculations significantly calmed down right around the time that my anxiety levels dropped, although I still do get them frequently - some that I can feel and some that my myotherapist has seen in my back which I haven't felt. She said that she pretty much sees them on all patients, it's very very common.

 

[nursevictoria]

Thank you for your response! I do not have an appointment with the ALS specialist yet. I will keep you posted.

I do know about BFS, and I am hoping to have that as a diagnosis.

Let me know how this turns out for you as well.

 

[monster]

I also have similar symptoms. Jerks, Fasci, electric shocks, vibrations, Hyper reflexia etc. I also had only 2 beats of clonus.
My neuro sent me to a als clinic. My EMG showed Fasci in three muscles only. Diagnosed with "most likely Benign Fasciculation syndrome".

My hometown Neuro sees me every 6 months.

Hoping the ALS specialist will put all your fears to rest. There are a lot of people on the BFS forum with similar symptoms.

 

[Bliz]

monster: That is great! I must have missed your post as I remember reading your other post saying that neurosurgeon diagnosed you with ALS.
nursevictoria: I have had benign fasciculations (tongue included) for more than 5 years.

 

[monster]

Neurosurgeon did say ALS, Hometown Neuro said ALS/PLS pending EMG.

ALS Clinic said Most likely BFS. Fasci found on EMG, done by the clinic.


nursevictoria- wait till you see the als specialist, they will probably put all your fears to rest. I'm glad I saw the specialist.

 

[nursevictoria]

Thank you for all of your replies. I cannot see an ALS specialist for quite some time. Hopefully my symptoms do not progress in this time. I am looking into other clinics that are a few hours away. I am in upstate new york.

 

[Toto's Dorothy]

Nurse,

I would imagine New York to be filled with neurologists competent in the field of ALS. I don't know how far away you are from the City but would believe they would have at least 1 clinic there.

Good luck on your journey.

 

[nursevictoria]

Hello everyone! Just an update. Got a second opinion. My emg was entirely NORMALand the new neuro says that its BFS! I am going to have EMG's with him every 3 months. Thank you for your support.

 

[TedH5]

Good news...congrats