Needing Advice

[findinghope]

Diagnosed 9/9; maybe not 9/11...Help Please

My husband started twitching in his right bicep in mid July. He sought advice from our physician who started him on Magnesium and told him to come back in a week. One week later, both biceps and trunk are twitching. They sent us to a neurologist who ran an mri and noticed both thighs are twitching (undulating visibly under skin). MRI was clean, so he ran an EMG and the shock test (can't remember the name)on 9/9. He told us that my husband has mild denervation in the proximal and distal muscles of the arms, lower legs, and thoracic para spinal and that he has ALS. I should add my husband also has "pins and needles" in his lower legs on occasion and can seem to create that sensation w/turning his head a certain way. Obviously, we were devastated. We were able to get into see an ALS specialist on 9/11 (I literally cried my way in not wanting to wait 3 weeks for treatment if it was in fact ALS) and he did a thorough exam and found no weakness or hyper-reflexivity and told us he needed to do his own EMG and CK enzyme test, but that the other dr.'s EMG looked to fall within the norm for a 52 year old man and that while it could turn into ALS, he didn't show any of the two classic symptoms (weakness and hyperreflexivity). Now we wait while our world is upside down. I don't know what to believe and where to turn. I'm praying for a miracle and kindly asking for advice. Does widespread twitching - symmetric widespread twitching ever serve as a precursor to clinical weakness and ALS?

 

[Nikki J]

Re: Diagnosed 9/9; maybe not 9/11...Help Please

I am sorry for what you are going through. Very smart to go to an ALS specialist. " mild denervation" on EMG does not seem enough for a diagnosis as your 2nd neuro said. Repeating tests sounds smart and even if the 2nd EMG looks worse there are many things to be ruled out. ALS does not usually start with twitching especially diffuse twitching. Obviously you can not help but worry now but I would listen to the ALS specialist. How soon will you get the follow up testing?

 

[Atsugi]

Re: Diagnosed 9/9; maybe not 9/11...Help Please

Dear FindingHope,

There is hope. If this is ALS, it is an unusual presentation. Twitching "all over" is not necessarily a sign of ALS. Typically, there's a muscle that is so weak it causes a foot to drop limply or a hand to be unable to grasp.

There are so many things it could be, that you really need to get that second opinion from an MND specialist. Good luck.

 

[skipper66]

Re: Diagnosed 9/9; maybe not 9/11...Help Please

I will say a prayer for you. Please keep us posted.

 

[Dusty7]

Re: Diagnosed 9/9; maybe not 9/11...Help Please

" I don't know what to believe and where to turn."
Believe that it's possible the first neuro jumped to a wrong conclusion. ALS is a diagnosis of exclusion and it doesn't seem the first neuro had the time to exlude everything else before saying ALS. Also, ALS is a motor neuron disease, so what is causing the "pins and needles". Possible it's a neuropathy the first neuro missed? Seems possible to me?

And don't say you don't know where to turn. You turned to an ALS specialist to verify or refute the non-ALS-specialist's opinion. And, of course, you came to our forum, where I'm sure you will find plenty of advice and support. So you're doing great.

"Does widespread twitching - symmetric widespread twitching ever serve as a precursor to clinical weakness and ALS?" EVER covers a lot of ground, but is not normal. We have a saying here, "When you hear hoofbeats, think horses, not zebras." So when someone tells us the saw a zebra with no stripes (weakness and hyperreflexia... and then adds in "pins and needles"), we may a little skeptical. It just doesn't sound like any "zebra" we've run across.

Good luck!

 

[Bliz]

Re: Diagnosed 9/9; maybe not 9/11...Help Please

I have been suffering from widespread fasciculations for more than 7 years. Paraphrasing DeJong's neurology:

"A diagnosis of motor neuron disease is a clinical one. The EMG is only a supportive tool to confirm the diagnosis".

Also the neurologists who gave your husband the ALS diagnosis with no clinical findings (except for twitches) is just stupid. Your husband twitches for a short period and there were rare, unfortunate cases where these patients progress to ALS but majority has something called benign fasciculations syndrome.
I found it very strange that one said the EMG was enough for ALS while the other considered it normal.

 

[findinghope]

My husband began twitching in his right bicep early July. His GP put him on magnesium and ran a CBC and Lyme test. 1 week later, he began having numbness and tingling in his legs (which he could sometimes cause to happen by turning his head) and he began twitching also in his left bicep. The GP sent us to a neurologist who ran an MRI, which came back clean. On 9/9 he ran an EMG and some shock test (don't know the name) in office and told us he has ALS! We were floored! He referred us to a specialist at Froedtert (we live in WI) and I was able to cry my way into an appt. on 9/11. At that appt. Dr. Barkhaus, the ALS Specialist, ran my husband through a gamut of exercises the 1st neuro did not do. Walking on tip-toes, heels, tongue exercises, strength tests, reviewed all of our history, asked many, many questions and reviewed the first EMG. We were prepared for the worst. He then told us, after 2 hours, he didn't want to put us on a roller coaster or give us false hope, but that without clinical weakness or hyper-reflexivity he could not diagnose him with ALS. We have his EMG scheduled for 10/3 and he also ordered a CK enzyme blood test. I should add my husband is now twitching symmetrically all over his body....both biceps, chest muscles, trunk, thighs, calves. We are frantic as to who to believe. All my husband seems to have heard is "I don't want to give you false hope" and all I'm holding onto is "I can't clinically diagnose you without these 2 other symptoms" Now my husband feels weak and drained, but I think that's the stress. I'm desperate for advice. Especially as to what in an EMG could tip this diagnosis in the direction of ALS. And does twitching precede clinical weakness...especially all over?

 

[findinghope]

Re: Diagnosed 9/9; maybe not 9/11...Help Please

Our follow up test is 10/3. I reposted this thread accidentally. sorry!

 

[findinghope]

Re: Diagnosed 9/9; maybe not 9/11...Help Please

I'm trying to find out WHAT on an EMG significantly points to ALS. None of my research can seem to pinpoint it. Is it a feeling by the neuro, or is it a measurement. My husband was told he had mild denervation of proximal and distal arms and para thoracic, but the ALS specialist, although stating he had to do his own EMG, thought the findings by the first Neuro were within the normal range for a man his age (52), height that rides a Harley, shoots trap and works on a computer all day. He is a wreck and I'm afraid that will affect his health even more (or the EMG).

 

[MaxEidswick]

Re: Diagnosed 9/9; maybe not 9/11...Help Please

>the ALS specialist, although stating he had to do his own EMG, thought the findings by the first Neuro were within the normal range for a man his age (52), height that rides a Harley, shoots trap and works on a computer all day. He is a wreck and I'm afraid that will affect his health even more (or the EMG).

get the ALS neuro to do a full eval. there are great WI ALS resources , too. contact them and ask for advise ....

 

[Dusty7]

ALS is a motor neuron disease, not a disease of the myelin, so if the EMG/NCS shows large demyelination, it points to a demyelinating disease, not ALS.

The EMG will also show the pattern of denervation. ALS is typically distal, meaning it starts at the farthest point of a limb--hands or feet--and then moves proximally (toward the body). It also generally starts in one limb, say a leg, then moves to the next leg before moving to the arms. Any other pattern casts some doubt on ALS.

ALS is also a disease of widespread acute and chronic denervation and that is one thing the EMG must show, not just mild denervation but widespread acute and chronic.

Remember ALS is a diagnosis of exclusion. There is nothing on the EMG that says, "Aha, this is ALS." The purpose of the EMG is to try to find what is causing the symptoms--a radiculopathy, nerve entrapment, peripheral neuropathy, something... and hopefully it will be something treatable. If every other possible cause of his symptoms is ruled out, then (and only then) should the diagnosis of ALS be announced. I understand this is hard on your husband, but really the die is already cast. It's either ALS or it's not. And if it is, it is. And there is nothing anyone can do about it. But until your neuros have ruled out everything else, it's not ALS and there is room to hope. For example, pins and needles are sensory and not a symptom of ALS, more likely a peripheral neuropathy. So how are they explained by ALS? They aren't...

And you're right, worrying about it will only increase psychological symptoms (like twitching, fatigue, etc.) If you read the Sticky, you know the 3 common presenting symptoms of ALS are CLINICAL weakness, atrophy and hyperreflexia. Does your husband have any of these? Then why give up hope. Remember, it is a very, very, very rare disease.

Good luck. Let us know how the EMG goes.

 

[findinghope]

I did read the sticky, but was very confused as to what an EMG can show, especially since one neuro was so certain ALS and the other (an ALS Specialist) reading his report said it seemed (operative word being "seemed") to fall within a norm. I was hoping many of you could shed more light. I know ALS has many different presentations - and that the symmetric twitching is not typical - I find that to be hopeful, but am so worried for my husband, I sought out all of you. I appreciate your wisdom, knowledge and kind support. I have no other word but grateful. His follow-up is 10/3. In the meantime, he seems to be losing a great deal of weight, but no muscle strength, although he is the incredible shrinking man right now. I wish I knew what that means, but I have to wait and let time tell I guess. What I'd give for an answer. We have two small children and people say to tell them, but I don't want to say anything until it is something definitive as we all know it will change their lives (and ours) forever.

 

[findinghope]

Re: Diagnosed 9/9; maybe not 9/11...Help Please

Our follow up is 10/3. So many of you state that ALS diagnosis takes a great deal of time. Both of our Dr.'s (one a general neuro, the other an ALS Specialist) seemed to think they could make a definitive claim based on the EMG, even though he shows no clinical weakness or hyper-reflexivity. This is so worrisome and confusing.

 

[findinghope]

Re: Diagnosed 9/9; maybe not 9/11...Help Please

Thank you! Follow-up 10/3. I am praying the first diagnosis was inaccurate and it is BFS or something else. Will BFS cause denervation as well, does anyone know?

 

[lgelb]

The key would be significant acute and chronic denervation as Dusty points out. As others have said, twitching w/o clinical weakness or atrophy is not typical in ALS. So keep hoping that something else (myelopathy?) comes out of the EMG and other tests. I would ask for spinal imaging in concert w/ the EMG.