Old 08-29-2017, 07:23 PM #1 (permalink)
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Question Concerned...

Hi Everybody,

I just don't want to have long threads or ask multiple questions, wanted to check if the following scenario would be a chance of ALS or not ... I me

Since 1 month and ~ 1 week I notice fasciculation in my calves and when I run or workout or randomly some very very mild cramps. Sometimes after working my calves. ( doin strength test each morning by pushing my body using my toes up to see If I get weak ).

I get also twitches all over in tights,biceps triceps , eye, temple but they are rare and go away.

Actions I took:

1st week : went to see 1st neurologist which dismissed ALS/MND from the beginning based on a quick clinical exam
2nd week: Saw a board neurologist with 50 years o experience is his field which he dismissed ALS as well and he didn't even considered necessary to have an EMG
3rd week: Finally found a neuro-muscular specialist with 10 years of experience which agreed to do an EMG in 3 limbs ( Legs, Right hand ) and a nerve conduction study.

What he told me ( still waiting for a final report yet ):
1. No evidence of MND , he clearly stated on a white paper for me to be re-assured
2. He suspects a lumbar radiculopathy ( I do have some pain around L4-L5 )
3. A pinched ulnar nerve ( light ) in the right elbow ( according ncs ) which doesn't bother me.
4. 3rd clinical exam without any clinical weakness or athrophy noticed by all doctors.

The reason I am experiencing this anxiety is that my DAD died of ALS in 2003.
Dad was sporadic and nobody from it's family had any neuro diseases in the past ( He has 2 sisters and 1 brother ). Grandparents were ok.

Last doctor said no EMG is required for follow up, but if I can do a spine MRI ( no contrast ) In 3 months would be good.

So based on this, nobody seemed concerned.

Also, the result of the clinical exam:

Neck:Supple. There is no cervical paraspinous muscle spasm or tenderness. The neck has full range of motion.

Cranial Nerves:
II: His visual fields are intact to confrontation
III, IV, & VI: Pupils are equal, round at 4mm. Both react to light. Extraocular movements are full. There is no nystagmus
V: His face is intact
VII: His face is symetrical with good strength billaterally
VIII: His hearing is grossly intact
IX & X: Uvula is midline, Palate elevates symmetrically
XI: His sternomastoid and trapezius are full billaterally
XII: His tongue is midline with good strength billaterally
Motor: There is no ahtrophy. There is no pronator drift
Coordination: Finger to nose, rapid alternating movements, finger tapping, heel-to-shin and foot tapping with normal limits.
Deep tendon reflexes: The biceps and trahicordials are 1+ bilaterally, the triceps is absent bilaterally. The knee jerks and ankle jerks are 2+ bilaterally. Toes are flexor bilaterally. There are no pathological reflexes.

Sensory: Intact to light touch and pinprick.

Gait and Station: Normal including heel, toe, tandem and arm swing. Romberg is negative.

I know I should trust the doctors, I know about the odds, and I know if it starts this way probably I would have a 0.00001% chance, but this fear is consuming my life because of my DAD (family history) and because I have a 10 months old baby.

Each time my twitches are going crazy I blame myself that I haven't made my genetic test before, I wouldn't have created my beautiful family and I would have stayed alone .. Because If something happens with me I don't care, but I just don't want to involve others...

I will avoid basic question like "EMG done to early" , etc. Just want to know if this might be a way of presentation? I have absolutely no weakness, no swallowing difficulties ( When I think I had bulbar after doing research I start to sing and I remove this bad tough).

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Old 08-29-2017, 07:36 PM #2 (permalink)
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Default Re: Concerned...

As stated no evidence of MND.

I am sorry about your dad but having one parent with ALS and no other relatives means your risk is just a smidge above someone with no relatives-in other words very very low. You don't have it now per 3 neurologists and the chances of ever having it are so low not worth worrying about.

There is no one genetic test to have so forget about that. Genetic testing is done in FALS families on an affected person. IF a genetic defect from the standard panel is found then other well family can choose to test for it. There are 30 percent or so of clear FALS cases ( multi family members with ALS) that do not have an identifiable genetic defect so those families just have to wait and see who gets ALS next. You, fortunately, do not have that same worry

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Old 08-29-2017, 08:14 PM #3 (permalink)
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Default Re: Concerned...

I saw a lot of anecdotal reports and maybe just 2/3 cases in some medical journal which presented patients that started this way. Regarding my dad I remember that all it's muscles started to twitch like crazy ( He had some fatigue before ) and at his first neuro visit they wrote "ALS suspicion". His family members were good and another brother died of a hearth attack at 83, seems that he was the single one chosen at the age of 53.

Of course a chance of FALS might be slow, but since twitching without any other presentation makes people more anxious, including myself , I admit I'm having a thinking like "Who was the first, chicked or the egg" mentality which doesn't make anything else just to amplify my fear.

However, I am aware that time is the single discriminator which will tell if I have something or not. aprox 2 months passed after I started to twitch, I will see in the next 6.
However, due to my Dad and after I explored this horrible disease, albeit it's rare, I started to make an obsession and use my Artificial Intelligence Software engineering experience and see how can I contribute to fight it, at least because my hearth stays with my dad and you, good people which spends a lot of time here and help everybody. I will want to change something anyway If this will be completely ruled out.

I will do the MRI and if that image confirms the herniated disc then I will get the peace of mind.

Thank you much Nikki J, thanks everybody here on this sub-section which helps us and gives positive energy to everybody.
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Old 08-29-2017, 08:48 PM #4 (permalink)
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Default Re: Concerned...

Another important question, In a super-rare case of ALS with LMN onset ( which is known as PMA ) as I don't have any UMN signs. I am still preparing for the worst , how long it takes from twitching to visible atrophy or objective weakness? If it's someone which started this way (In case).

I did some research and yep, my symptoms are more consistent with L5 S1 spine damage as only the innervated muscles supplied by these nerve roots are affected, calves ( gastrocnemius ) and some other group which are not twitching permanently.

I don't want to think for the worst but In case something might happen and I will end up with a wrong diagnosis I want to be prepared for the worst and hope for the best.

So, if someone who had a LMN onset (as I don't presend Bulbar nor UMN signs) I would want to learn more about the way symptoms progressed.
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Old 08-30-2017, 02:10 AM #5 (permalink)
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Default Re: Concerned...

Sorry about your dad. Essentially, it now appears that "PMA" is ALS with LMN onset, not its own disease. So everything you have been wisely told here still applies, and I will agree that in no way does your description accord with any MND presentation.

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Old 08-30-2017, 04:29 PM #6 (permalink)
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Default Re: Concerned...

The right leg it's thinner than the left one. Altough my mom told me that I had this for a long long time, since I was 15. It doesn't present as a really noticeable athropied muscle, but this is the most scary part. I'm not sure what it's the % from the general ALS/MND presentation based on these symptoms.

Today the fasciculations are not so hard and the twitches are not so crazy as yesterday.

This is the scenario which scares these people which most of the anxiety, electrolyte imbalance or pinched nerves in the spine mimic the LMN-onset ALS type.

Still don't know what to believe but guess I'll continue follow up with my doctors and will keep you updated.
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Old 08-30-2017, 07:02 PM #7 (permalink)
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Default Re: Concerned...

I don't mean to be callous, but you still don't know what to believe?? Three neuros, one of whom was a neuromuscular specialist, as well as two of our most knowledgeable members have told you that you do not have ALS symptoms. I understand you're anxious, but you need to treat the anxiety. I'm sorry about your dad, but your anxiety is getting the best of you. Please log off and follow up with your docs.
Best wishes,
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Old 08-30-2017, 07:52 PM #8 (permalink)
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Smile Re: Concerned...

Tracy, all my respect for you and you were not callous.

First I want to thank you for even took the time to reply to me as I'm pretty sure I needed this type of "cold shower" so I can get back on track.

In the meantime, after I will have the follow-up with my neuro I will see if I will need to get some professional psychiatric help to ensure this.

In the meantime, I want to study and learn about this disease as I started to search, research, learn and maybe contribute to something that can work to heal one day.

Given I was half of a caregiver in the past, history of my Dad, my confusion and the fact that this anxiety probably was an impulse which driven me to meet all of you good people here which really took time and probably did a lot of efforts to type and re-assure an anxious person which probably has nothing than worry.

Thank you so much, different opinions are welcome, that's all.
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Old 08-30-2017, 08:04 PM #9 (permalink)
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Default Re: Concerned...

I have lower motor neurone dominant als, I actually didn't have any umn signs at my probable diagnosis, so other Dx were being considered including PMA and MMN. At that time I had zero noticeable twitches. My twitching showed up at the same time as my few UMN symptoms which increased as time went on. You really need to trust your doctors.

With atrophy you need to have a base line to work from, as we all vary from limb to limb. Mine was clear on clinical exam and I lost several inches on my right thigh measurement in the space of 5 weeks. If you have no clinical weakness you won't have atrophy because in Als the atrophy is caused by the muscle not working.

I hope this helps to reassure you

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Old 08-30-2017, 08:10 PM #10 (permalink)
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Default Re: Concerned...

Thank you so much Wendy for your effort, this is really reassuring.
That's true, and even early signs of LMN would have been picked up by EMG. If EMG didn't picked something bad I guess it's reassuring. However, I know LMN dominant it's much much rare that typical one so your answer and the odds are super reassuring.

I don't know how should I thank you everybody for being so patient and answering me these questions. ..
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Old 08-31-2017, 04:57 PM #11 (permalink)
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Default Re: Concerned...

Another Quick question about the experience of some people who had dominant LMN ALS.

Clinical exam said :
- Absent triceps reflex bilaterally ( Most neurologists are not concerned as this reflex is usually hard to be obtained )
- Babinski is not positive ( no upper thumb dorsiflexion ) but it's not going down either. Absent means no concerns for the doctors.

But my research indicates that in some cases these 2 indicators migth have some relation with some LMN damage. This is what scares me actually.
Adding the twitches in both calves ( but gastrocnemius especially ) and very rare and occasional spread twitches, the EMG report (I'm still anxiously waiting for it so I can study the values ) might give me this concern.

I will post 3 pictures of my legs as my right calf seems thinner. Maybe someone can help me to check if it's a normal range (I know bodies are assymetrical) or something concerning. I don't know the exact difference between them but I estimate .90 inch or 1 inch.

I will attach the pictures.

Right Calf : https://ibb.co/jRyBgk
Left Calf: https://ibb.co/cCLeZ5
Both Legs Aligned ( 1 position ) : https://ibb.co/hmhRE5
Both Legs Aligned ( 2nd position ) : https://ibb.co/hLj6E5

So no UMN signs at all, not even brisk reflexes, etc. But these 2 may be equivocal or hard to obtain.
Compared with twitched, possible athrophy and 2 absent (equivocal reflexes) would lead me to suspect LMN Damage.

What are your opinions based on this ?
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Old 08-31-2017, 05:01 PM #12 (permalink)
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Default Re: Concerned...

I have to pictures of my both legs. As the right calf seems athropied.





https://ibb.co/hmhRE5
https://ibb.co/hLj6E5

Furthermore, I read some medical books which says that triceps reflex is absent it could possible be a damage to LMN
Babinski is absent as well, and I read that if the toe doesn't go down it Might be a damage to the LMN

This is still scary.

All of these added in the list with the twitches, it's something that still leads me to believe is something with my LMN.
What are your toughs about this?

Could an LMN als be misdiagnosed as radiculopathy?

MRI will clear this I think.
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Old 08-31-2017, 07:22 PM #13 (permalink)
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Default Re: Concerned...

You can't tell much from pictures but I see nothing alarming.

You can have atrophy for a variety of reasons.

The pattern for radiculopathy is usually distinct from ALS. Especially with LMN disease it should be obvious on EMG

The EMG is often more sensitive for radiculopathy than the MRI. We just went through this with someone else here

I am LMN my reflexes are pretty normal To be absent there would have to be pretty advanced disease if it were MND.

A mute babinski is not a problem always or even usually. It is a normal variation. Further if you knew what they were testing for according to one famous neurologist it is not even a valid test

You are reading some online books. The three neurologists who examined you have combined 20-25 plus years of training after University plus however many years of practice. They have seen pathological reflexes in all permutations. They know how to put a clinical picture together. You don't

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Old 08-31-2017, 07:44 PM #14 (permalink)
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Default Re: Concerned...

Yes it is true. I will wait for the EMG report, but if the neuro-muscular specialist (Which really seemed very very tough in examining me). For instance he did all known reflexes which he knew, and when he clearly stated after the EMG "No evidence of MND". I believe there was no denervation or something.

He said no follow up EMG needed and maximum an MRI , if I want, and on the MRI paper he wrote (Lumbar radiculopathy).
The single fear that I have it's that an LMN disease could be misdiagnosed as radiculopathy, although multiple online doctors which I consulted said that this is impossible as the patterns and they way the test is done is significantly different.

Sorry for bothering everybody with my "mental illness" now, I am reading the "Read before posting" day by day and will try to relieve myself.

My mother mentioned that I always had the right leg thinner and it's normal. She knows that but because I'm now mentally screwed I don't believe her...

I'll see the progress
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Old 08-31-2017, 08:40 PM #15 (permalink)
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Default Re: Concerned...

Seriously it is time to stop. You do not have ALS. Log off and speak to your doc about treating your anxiety.
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