Scared to death.....

[Jaded-1]

i have been developing some balance and weight loss over the last 5 mos. I was referred to a top notch neurologist by my endocrinologist (I was referred to endocrinologist due to I was exhibiting signs of autonomic dysfunction)

anyway... after our office visit he said he suspected ALS. I was shocked and had been under the impression the fasciculations caused fatigue and the weight loss. (Muscle is at work and the takes calories and the muscle must be fatiguing).

Well.. I went for the emg last Thursday and he said the emg is in line with his initial diagnosis. He told me I had ALS and I need to get to a clinic for treatment and a second opinion as well.

My emg report..
f wave - normal
sensory ncv - normal
h reflex - normal
emg - abnormal

13 places had.. (everything tested but my L upper/middel cervical psp and upper/lower middle lumbar psp)
fibs/psw 1+
fasc 2+
h.f none
other none
MUAP Amp 1+
MUAP Dur increased
Recruitment pattern Reduced

My Tongue (L and R)
Fib/PSW 2+
Fasc 2+
other none
MUAP Amp Normal
MUAP Dur increased
Recruitment pattern Reduced

I am concerned as this looks like it could be bulbar-onset ALS. He did not specify which ALS onset and wanted me to get to an ALS clinic.



Can this be caused by anything else? Caffeine? Marijuana? Exercise?


Anyone every have a false positive emg? This neurologist has over 38 years of experience and is a 5 star and has one top doctor honors 2x in the past 10 years. (saw awards on his wall).

 

[Zaphoon]

A second and even a third opinion are always in order when it comes to an ALS diagnosis. The clinic you are being referred to will repeat a lot of the testing that has already been done (most likely). You will just have to wait and see what the doctors at the clinic have to say.

Keep in mind that neurologist are highly skilled in what they do but it often takes several months for a true ALS diagnosis to be given (due to the "rule out" process).

The EMG is a useful tool in the diagnosis of many neurological disorders. It can always be something else until it can't be anything else!

Zaphoon

 

[BethU]

Jaded-1 ... I can't believe your neuro brought up ALS on the basis of a single office visit. As Zaphoon said, ALS cannot be diagnosed through an EMG alone ... there are many "mimic" diseases that have to be ruled out before you can seriously consider ALS.

Hopefully, our forum's medical experts will be able to comment on those EMG findings. You definitely need a second opinion, and hopefully from a clinic or neurologist that specializes in motor neuron diseases.

In the meantime, I'd recommend you not worry about bulbar or limb onset. If it ever becomes time to think about ALS, don't believe what people say about bulbar. It is NOT necessarily a faster progression ... both bulbar or limb onset can be fast, slow, or moderate progression. And there are a ton of devices to assist in speech, etc. We have at least one member of this forum with over 10 years living with a bulbar onset.

But that's getting way ahead of ourselves here ... As I said, your neuros will have to evaluate you for a number of diseases that mimic ALS. Hopefully, your second opinion will shed some light. I know saying "don't worry" is a crock, but keep hope alive for a different diagnosed.

Hang in there.

Speechless in L.A.

 

[Jaded-1]

Sorry, I should point out I had been going through mris and cat scans (full spine and brain mris/ct scan from brain to hips), blood work, etc since December. We did not head this route until I was determined to get to the bottom of the weight loss and measured 4 inches on my thighs and 2 inches on my calve...

I have had full thyroid, immune, endorcrine system, heavy metals, rheumatological, cardiologist, and gastro due to I was being investigated for autonomic neuropathies. At my last visit (I would go every 2-4 weeks and spend a whole day having tests). My endocrinologist referred me to the neurologist after my last visit. She was inspecting my back muscle and sent me to see the neuro.

He told my wife after the office visit from the neuro exam he suspected an anterior horn cell disease, probably als. I had significant tongue fasciculations and she read that was unique when in the middle of the tongue to als. I also have wasting on the right side of my tongue. I had thought I had a jaw tremor due to the fasciculations.


The neuro sees Northwestern's difficult to diagnosed suspected Anterior Horn Cell Diseases and has significant experience with Anterior Horn Cell Diseases. That is why I am so nervous. The more I think about it, why would he say something horrific as ALS and not be pretty sure.

 

[Zaphoon]

Jaded,

Your profile doesn't let us know how old you are. ALS median age of onset is about 50. The bad news is you've had a lot of testing and rule-outs done by someone that has an idea of what he is doing.

The good news is you have not had a second opinion yet. Why not focus on that? It can still be something else until the doctors have run out of all of the other possibilities.

Zaphoon

 

[Jaded-1]

yah, still sinking in for me. Has been 4 days. I feel some weakness, but wasnt even thinking anything this severe. I just want the twitching, cramps and weight loss to stop. I have lost over 50 lbs since thanksgiving and i have had multiple years of weight lifting tossed out the window. Luckily I was documenting my progress and have pictures to show the dramatic loss on my shoulders, back and legs.



Hopefully some md will come on and have a better theory. hehe

 

[Jaded-1]

oops, sorry. I am young which makes this scary. I am 36 (will be 37 in 15 days).


cople of oddities that I am praying throw a curveball into my neuros diagnosed and offers another explanation. I was an "agent orange" (dad was in vietnam and exposed. Burnt his hair off) baby. I also am a survivor of leukemia as a child (ALL).

I also had a precautionary emg/ncv last august that was normal that was ordered due to a minor back issue. The ncv and emg were normal.

 

[Jaded-1]

The Univ of Chicago fit me in next week with Dr Roos. I just hope they missed something. Say a prayer for me.

 

[BethU]

So glad you got a quick appointment. Am praying for you.

 

[Zaphoon]

Jaded,

Glad to see you're getting in quickly to your next appointment. I'm hoping for the best!

 

[worriedsick]

hey jaded, quick question for you. You said that you had measured 4 inches on your thighs and 2 on your calf, is that inches lost or total inches remaining? I only ask because I also had been a weight-lifter for a while and I stopped back 3 months ago and i have noticed decreases in my biceps and forearms (areas where im having some fatigue issues). I'm not sure whether this is because i stopped the weight lifting and havnt been eating well or if it is the other way around .

 

[Jaded-1]

This has occured over the last 3-4 weeks. I am active and fit and not inactive. The neurologist said he noted atrophy as well. I have went from running 40 minutes with 5 lb weights in each hand and then lifting right after to having difficulty standing, walking steps, lifting my arms up above shoulders, and keeping my head up when I sit at a chair.. This all happened over the matter of 6-8 months. The cramps suck too. I dont care about the fasciculations, I thought they were normal and argued with my wife for months. My neurologist didnt seem to concerned about the inches and noted atrophy by tapping and manipulating my muscles. A trained neuro will not miss atrophy, so see a doctor. If a doctor tells you that you have ALS, then worry... if not.. go live your life. You also cant fool an EMG.. My emg matched my doctors clinical impression and thats why I am afraid of als.


I am praying for a reprieve at the als clinic and my specialty neuro's diagnosed was wrong.

 

[worriedsick]

This has occured over the last 3-4 weeks. I am active and fit and not inactive. The neurologist said he noted atrophy as well. I have went from running 40 minutes with 5 lb weights in each hand and then lifting right after to having difficulty standing, walking steps, lifting my arms up above shoulders, and keeping my head up when I sit at a chair.. This all happened over the matter of 6-8 months. The cramps suck too. I dont care about the fasciculations, I thought they were normal and argued with my wife for months. My neurologist didnt seem to concerned about the inches and noted atrophy by tapping and manipulating my muscles. A trained neuro will not miss atrophy, so see a doctor. If a doctor tells you that you have ALS, then worry... if not.. go live your life. You also cant fool an EMG.. My emg matched my doctors clinical impression and thats why I am afraid of als.


I am praying for a reprieve at the als clinic and my specialty neuro's diagnosed was wrong.

I am a bit scared at the moment because i have pretty bad cramping feelings in my extremeties, fasciculations, and generally muscle jumpiness. I went from being in the gym 3x/week lifting pretty substantial amounts of weight (i was benching 250ish for reps, squatting 225 and deadlifting 225). I havn't been to the gym since early feb. Now after just doing basic things like walking around, going up stairs, using the mouse/keyboards, my forearms just KILL me as if i had been in the gym all day. I carried a bunch of boxes out to my car and my forearms burned like hell and hurt the next day.

I have been to a neuro - he did a clinical exam and said "what you're feeling isn't neurological, i see no fascic" he did all sorts of stuff, manipulated my muscles, made me walk on tip-toes, hit me with all sorts of hammers, everything. (no emg tho).

I guess the things running through my mind now are... too soon? (i only started feeling like crap in the end of feb) why no EMG? why are my biceps so much smaller than they were? why have i lost 20lbs? why do my forearms and biceps burn after simple activities? why do i feel like im always vibrating inside?

anyway im sorry to jack your thread like that. good luck and i hope you get a different opinion.

 

[Jaded-1]

Get a second opinion. If you are feeling weakness the doctor can tell if you have lesions prior to weakness. I am pretty sure alot of my weakness is due to poor nutrition as I have had issues swallowing, nausea, and food impaction. I had eosinophilic esophagitis and my gastro thought it was that causing the food getting stuck. It is so weird remembering telling her it feels like two bumps when I swallow.. One at the back of my throat as I swallow, the second in my esophagus.


The other thing that is weird too is that any shirt touching my neck makes me feel uncomfortable.

 

[AndyDJX]

Jaded--

I'm a survivor of childhood cancer as well. Did you have radiation? I have read of people who have post radiation muscle wasting and fasciculations.