Old 02-06-2019, 08:24 PM #1
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Default Haven't been here since 2011 and now I am scared. Triggered again.

So I am back after a brief hospital stay which caused whatever I have to flair up again.

It all began in 2011

*******-------Feb 4-5th 2019-----------*********
So went back to same neuro with exasperated symptoms after a brief stay in the hospital for severe constipation.

After the hospital where they gave me 4 enemas in 12 hours, I had an electrolyte imbalance (low potassium) caused something called bradycardia or slow heartbeat.
Now every time i urinate my heart rate spikes to 140 and when i am done it goes back down. Something called a vasovagal response according to a cardiologist.

within 7 days of checking out of the hospital
all my old symptoms came back but this time with a vengeance.

Left sided weakness, left arm, left leg, neck weakness, swallowing weakness, tongue weakness.
scariest part is swallowing weakness. feels like my entire left side of my swallowing is non-existent. My voice is labored and raspy.
I have fasciculations all over my body (back, legs, arms) with muscles cramping in my left leg and arm.

Had MRI's with contrast of head and c-spine the same day as well as blood tests to rule out a lot of things. MRI's all came back normal.
Had EMG the very next day as neurologist seemed worried. Had mild p

I don't know what my emg results actually mean, if someone can help me understand that would be amazing.

I do not know what would stir this all up again and the doctor keeps saying its not MS but keeps referring to a possible auto-immune response. I am pretty scared right now again.

Can someone help me with EMG as the neuro was aloof, I asked him what he thought and he danced around the answer a bit.

Any help with what the doctor put in here would be amazingly helpful.

Thank You in advance.

Doc notes (EMG and Nerve Conduction Study attached):
Addendum February 5, 2018:
The patient's EMG and nerve conduction study showed a mild ulnar neuropathy at the left elbow. There were equivocal findings suggestive but not diagnostic of myasthenia. There were minimal changes on needle exam that were nondiagnostic and may fall within the broad range of normal. Mild prior C8 radiculopathy in the left cannot be ruled out

mild left ptosis on 60 second eyebrow raise.

Brain and cervical spine MRI are normal

As the patient has had persistent bulbar symptoms for a number of years, had an upper limit of normal ACHR antibody, and a borderline EMG and nerve conduction study/repetitive stimulation given that his symptoms are quite bothersome is reasonable to try an empiric trial of pyridostigmine. I've discussed this with his UCLA cardiologist who is comfortable with this as it may also help any orthostatic symptoms that he has.

We are still awaiting a thoracic and lumbar MRI. Other potential should be considered as well a lumbar puncture if he does not improve appreciably. Many of the symptoms would not be explained by myasthenia so he may have a more widespread autoimmune diathesis. Referral to rheumatology will be revisited after imaging.

I'll also check to see if he's had a formal swallowing evaluation to get a more objective sense as to the cause of his symptoms of dysphagia

Summary of EMG Testing

Routine nerve conduction studies were performed on the left side, using a wrapped warm pack if needed to maintain skin warmth. The median motor, sensory, and F-wave, the radial, ulnar, and sural sensory, and the tibial and peroneal motor and F-wave responses were normal. The ulnar motor response was mildly to moderately delayed across the elbow. Comparison testing, a sensitive indicator of median neuropathy at the wrist, was normal.

3 Hz repetitive stimulation of the left spinal accessory nerve, recording at the trapezius before, immediately after 30 seconds of volitional activation, and at five 1-minute intervals afterward, revealed borderline decrements between 2 and 4 minutes post exercise.

EMG examination using a sterile, disposable, monopolar needle electrode was performed on the left upper and lower extremities, lower lumbar paraspinal muscles, and two cranial-nerve innervated muscles. There were mild prior neurogenic changes in distal muscles.

Conclusion: This study shows no definite abnormalities other than a mild ulnar neuropathy at the left elbow without convincing axonal loss. In the appropriate clinical context, the repetitive stimulation findings might support a mild post-synatptic neuromuscular junction disorder (such as myasthenia). The mild EMG changes in distal muscles fall within the broad range of normal but may indicate prior C8/T1 radiculopathies. Please see my addended office note from tomorrow for clinical correlation.

Review of UCLA records from 2011-12 revealed mention of an outside EMG showing prior denervation in the left SCM. Dr. Pleninger raised the possibility of recurrent herpetic infection.

Also in 2011 binding and blocking were well within normal limits. Modulating was high normal 18 with 20 being the highest threshold.
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Old 02-06-2019, 08:37 PM #2
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

Mod note, prev threads:

http://www.alsforums.com/forum/do-i-...o-answers.html
http://www.alsforums.com/forum/do-i-...ling-news.html
http://www.alsforums.com/forum/do-i-...d-welcome.html
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Old 02-06-2019, 08:38 PM #3
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

They want to try a drug that is used in myasthenia to see if it helps. They are also thinking they might refer you to a rheumatologist after doing the MRIs, if it still looks like you might have some combination of autoimmune problems.

There is no suggestion that you have ALS. At all.

So you're in the wrong place -- which is great news.
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Old 02-06-2019, 08:53 PM #4
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

In ALS, there are no remissions which is what you describe with symptoms before 2011 and now retuning. Also, if you had ALS since 2011 you’d likely either be dead or profoundly disabled.

A relapsing and remitting course can be seen with autoimmune conditions. Your report mentions some ptosis (eyelid droop) on 60 second eyelid raise. That is suspicious for myasthenia gravis , an autoimmune condition.

Your EMG indicated some evidence for a radiculopathy and with repetitive stimulation suggesting a “post synaptic neuromuscular junction disorder (such as myesthenia)”.

You also had an upper limit of normal level of acetylcholine receptor antibodies (ACHR). These are often seen with myasthenia gravis.

So it sounds like myasthenia gravis is is the working diagnosis, and your doctors have a plan for you — a trial of a drug called Pyridostigmine.

Hey, that’s good news! No ALS, and there’s something you can try for your symptoms. Wahoo!
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Old 02-06-2019, 11:48 PM #5
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

So the EMG's and Nerve Conduction Studies look OK to you? There were a few outlier results plus my symptoms. Thanks so much for your input.
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Old 02-25-2019, 08:45 PM #6
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

43 year old male here. Grandmother on my mothers side died of ALS in late 60ís. No other person in the family has ever had it.

Still sick and getting sicker. Spent a week in the hospital on ivig now more then a week out havenít seen any improvements. Myasthenia treatment has not helped me at all. I am now having a hard time showering or using my arms at all.
In the hospital the tests they ran were:
- MRIís w/contrast (head, neck, thoracic, lumbar) all normal
- Lumbar puncture (elevated protein in csf of 69, highest it should be is 45)
otherwise normal
- MRAís neck and head normal
- every blood test under the sun

Infectious disease
tests positive igg for HSV 1,2,6, West Nile,
Influenza A, Influenza B
Only Igm thatís come back positive is HSV6

According to infectious disease doc he said ivig can do this to me as it has immunities from thousands of other people that could make me test positive for antibodies.

Endocrinology (I have 4 generations of thyroid disease in my family)
low total testosterone at 158 (lowest range is 25
TESTOSTERONE FREE at 33 (lowest range is 42)
Insulin-like Growth Factor 1 high at 270 (highest range:230)
LH - LUTEINIZING HORMONE - Low at 0.22 (lowest range 1.22)
FSH - FOLLICLE STIMULATING HORMONE - Low .20 (lowest range is .70)

Rheumatoid:
RF: Negative
ANA: Negative
Sedimentation rate, Erythrocyte: High at 14 (highest range 12)

ACCORDING TO DOCTORS:
MS ruled out
Infection ruled out
Vascular ruled out
Auto-immune ruled out


My current symptoms:
Left sided weakness (left leg, arm, torso)
Very weak neck
Tongue twitching that neurologist noted
Difficulty swallowing
Zero energy
Loss of dexterity in left hand
Currently bed ridden
Zero appetite (forcing my self to eat)
Twitching all over my body (some so strong in my shoulders feels like someone tapping me on the shoulder hard)
Muscle spasms (mostly large muscles)
Cramping in both forearms and left leg (calf muscle, left quad and between left foot and ankle flexor).

Seeing a new neurologist Monday from Seider Sinai to get second opinion. Iím hoping for the best.

Wish me luck.
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Old 02-25-2019, 09:04 PM #7
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

Best of luck with the 2nd opinion. Cedars has a great reputation.

You donít have ALS. The time course, history, and EMG all point away from ALS.

If the neurologist canít figure it out, you might also consider seeing an endocrinologist as some of your hormone levels are out of whack.

Donít worry about the sed rate (ESR) of 14. Thatís really not abnormal and means absolutely nothing at that level. Hormone levels, on the other hand, have a much more precise range of what constitutes normal vs abnormal.

On this forum, all we can really tell you is that thereís nothing in your story that points to ALS. We canít otherwise diagnose you, so keep working with your doctors, and let us know when you finally get answers.
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Old 02-26-2019, 04:09 AM #8
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

Good luck for your second opinion run.
What you describe could well be a mix of stress, self persuasion and a mild neuropathy.
Appetite loss, fatigue, and percieved limb weakness or swallowing issues could be mere anxiety (there's a condition called globus that mimics dysphagia when there's actually none).
Twitches are irrelevant as a sole presentation symptom.
Don't bang your head against the wall with the tongue twitch. I know you can read everywhere they these are more concerning than, say, calf fasics but with BFS the tongue (and every other motor unit) can be involved. I've read somewhere that in MND patients actually have tongue fibs rather than tongue fasics, but I'm not an expert on that field.

If your symptoms go back to 2011 I would suggest the odds are vastly in your favor, or it's an incredibly slow progression version of the disease.

Keep us posted and take things one day at the time.
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Old 03-06-2019, 10:37 PM #9
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

I saw the neurologist from cedar sinai this past Monday and he gave me a clinical exam and told me we were just going to have to wait and see while laughed saying, “best news you can get is no news from a neurologist.” I disagree.

I’m being put on a course of steroids to see if it makes a difference in my condition due to it possibly being a relapsing/remitting condition (basically their willing to try anything now). He also told me ALS can abesolutly progress slowly over this much time and finally go into over-drive at a certain age.

Next emg scheduled for a month from now. I’m having a hell of a time getting into a neuro muscular neurologist even though I live in LA. Any advice to get into a special for for Neuro muscular for a consult would be greatly appreciated.
At this point they now can’t rule ALS out and just 1.5 months ago my doctor said rule it out and forget about it as you don’t have it.

So anyone who is told to forget about it, it’s just for your piece of mind. Unless you die of something else, ALS is always on the table your whole life. Your lifelong chances of getting it are 1 in 300. Not so rare after all.

My symptoms started 13 years ago and now ALS is on the table.
6 EMG’s all clean (over 13 years)
20 clinical exams
Diagnosed with benign facilations.
8 years in between major symptoms.
Now at age 43 ALS possible.

I love and respect anyone who has to deal with this horrble disease.

Wish me luck, I am going to try and beat the odds.

Let hope for a cure and treatment even soon.
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Old 03-06-2019, 11:42 PM #10
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

Dude, ALS is not on the table for you nor has it ever been. The timeframe and symptoms do not align. Your hyperbolic statement about the disease is frustrating at best. It appears you've been chasing this disease for over a decade without symptoms that would indicate you having this horrid disease. It's best for your own mental health and your life ahead of you if you focused on getting some answers to whatever it is that's going on and let ALS go. I'll say it again let. It.go.

Believe me, your mind is a powerful weapon and if you continue to let it control you as it has been, you'll be back on this site year after year still questioning if your symptoms indicate a disease you so obviously do not have.

Please continue to work with your docs and if you get yet another "no, it's not ALS", I do hope you'll believe them. What a sad waste if you choose not to.

Good luck to you and take good care.
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Old 03-07-2019, 01:34 AM #11
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

Even a slow progressing case of ALS would not give you repeatedly clean EMGs and a clean clinical exam by a neurologist. Especially with symptoms for 8 years.

I donít know what you have, but it sure isnít ALS. Of that I am 100% certain .

No need for you to keep posting here except to follow up when you do eventually get a diagnosis. Sorry things have been so drawn out for you with no definite conclusions.
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Old 03-07-2019, 02:40 AM #12
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

No one has put ALS back on the table except you. Blaming neuros for retriggering your own obsession only needlessly scares others.

I don't know what the Cedars guy really said, but re-reading your latest EMG, I'm sure he wasn't asserting that he thinks you have ALS. Yes, most anything is possible if we look hard enough for that one snowstorm in August, and maybe he was just fey enough to say ALS can develop over 13 years and ramp up. That's a purely theoretical, yes it could happen. Did you ask him if he had a patient with that precise experience?

Just like, your car could be under a tree when you get up. Are you going to be up all night worrying about that or just deal if it happens?

How sad that you have lost so much of your life to shadowboxing a disease that no one in their right mind is interested in seeing on the discharge form.
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Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

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