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Myscootch

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Learn about ALS
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Flanders
It has been awhile since I have posted! I started my journey a little over 2 years ago and it has been verified that I do have Upper Motor Neuron issues, however, my question at this point is I realize there is a "time frame" for ALS (about 15 to 18 months from the start of symptoms) but I have had intermittent fasciculations for the last two months now. I only know of one disease that has both Upper & Lower Neuron issues which is ALS but even though I have very visible fasciculations throughout my body intermittently I have no muscle wasting or severe weakness at this time.

1. Are there any other Motor Neuron Diseases that have both? (I have not found any as of yet)
2. Are there people who have had fasciculations without atrophy & weakness?
3. Is there really a time frame for ALS that is outside the "standard" or "typical" version?
4. The doctors tell me it is not ALS but also state it cannot be ruled out! How can this be?

Are there any folks who took longer than the "standard" time frame for ALS to be the diagnosis? I only ask as I have had so many tests, have been a person of the disease of the month club which in my case changes as my symptoms do and the tests themselves have been quite wacky to say the least. I do show symptoms in at least 3 regions, but again no significant atrophy or weakness. Things have changed within the last 2 months which is different than it has been throughout the entire process.

It doesn't matter to me if it is or isn't at this point as I have already been told what I have is "neurodegenerative", there is no treatment or cure and go home and enjoy the days for which I do, I just am curious at this point as I am really confused. I have video at least to prove I have the fasciculations but am hoping someone else has a clue regarding them at this point and the progress of MND.

Thanks - :)
 
Welcome back, Betty.

You have good questions. Why not ask your neurologist?

I'm not aware of a predictable standard "time frame" from symptoms to diagnosis. My wife had her first symptom, dropfoot, in November and was diagnosed in December, with significant weakness (requiring a cane to walk) by January.

It's puzzling that you said you have symptoms in three regions, but no significant weakness. What are those symptoms?

Sorry to hear you're getting confusing results from multiple doctors. It is said that a man with two clocks is never sure what time it is. Seems to me you need to find a single specialist and let her be the sole investigator until ALS is ruled out/in.

Fasciculations are common to a lot of conditions. I wouldn't call them an indicator of ALS.

--Mike
 
Hello and thank you for your reply! I have asked the neurologist and all he said was "MND". The symptoms I have are spasticity in arms & legs, trouble with my fingers, my strength is just starting to go, etc. I have not rec'd an "official diagnosis", however, there has been speculation due to DNA testing for Hereditary Spastic Ataxia (AD), Cerebellum Ataxia Unknown, Mitochondrial Myopathy and more recently MND. I have hyperreflexia on all 4 limbs now, however the last neuro visit it seems they are starting to lessen after 2 years at +3. The legs have gone from +3 down and this is after 1 1/2 years of being at 3+. I have had an EMG in late 2013 which showed slow motor responses, rare paraspinal spike and no response from the rural nerve. CPK - slightly elevated, LDH slightly elevated. 2nd EMG on the same side showed the same but they added carpal tunnel syndrome due to the median nerve response. Each section of the EMG/NCV test have been noted as Carpal Tunnel Syndrome, radiculopathy and they legs, well just slow responses. Had a muscle biopsy which had red ragged fibers (only a few), a few atrophy fibers and obviously mitochondrial myopathy (but not enough for a full diagnosis). I have had no tests for over a year now and get bounced around still. A top neurologist in ALS did note he saw the fasciculations in the calf but no one has followed up.

I asked about the fasciculation's as I have seen them more frequently now though still intermittent in my calf, forearm, upper shoulder, the muscle just above the knee and even the side of my stomach. All are on the right side (visual) but I can feel them starting on the other side now (no visuals). They do happen while I am fully at rest. Also they have been visible in my jaw (other people see them) and I have started having issues with my mouth (drooling, biting myself, tire easily when chewing). It has only been the last 2 months things have been changing faster and things are becoming much more challenging overall. I have lost a lot of strength in my right arm and hand (more than 50%).

I have pretty much given up with neurologists and went back to my primary who is sending back to one who, well, shipped me out real quick and than at one point called to tell me (no diagnosis name though) that I had a neurodegenerative disease for which there are no treatments or cure for. This was on the phone, 9AM in the morning and the following week my insurance ran out. Oh, the last top guy did state I am starting to show weakness and he is the one who generalized I have MND and left it at that with the wait for more months and come back.

I am just trying to understand what is going on with my body and so far no one really has taken the time to explain anything about this to me. They throw out these words like MND, neuro degenerative, tell me there is no treatment or cure, yet have not decided what they can't treat or cure. I understand there is a process I guess for them, but my life is not a process! Also, if this ends up being ALS after all this, to me it is truly a sad thing as I could be participating in research before things do get really bad and it is too late. Just a note - I have overheard ALS in conversations from a couple of my doctors, yet when I ask I get probably not as there is an 15 to 18 month time frame for this diagnosis. Well, I am beyond that and I wait for any discussion regarding my condition. Everything suspected has been now taken off the table (guess diagnosis) so I am no further ahead than when I started this journey other than I will not get better and there is no treatment or cure and let's wait and see.

I saw my primary a few weeks ago & he recommend I contact the ASL Association and explain that I am within the time frame and should register, yet at the same time they will not accept me as I do not have a "bonified diagnosis". So I guess I will ask, what would you or anyone else think or feel? Not saying this angrily but just asking so please do not feel I am being n the attack. :)
 
No offense taken at all. It's very interesting. Wish I were a doctor. Perhaps someone more knowledgeable will come along and decipher it all.

There are three points on the positive (nonfatal) side, I didn't read "denervation" in your EMG, your fasciculations are not diagnostic of ALS, and you've gone a very long time without paralysis. In other words, maybe all is not lost.

Someone more knowledgeable than me will come along and give you a better answer.
 
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Thank you Atsugi and I guess only time will tell with the issue with the fasciculations as they are new for me! Thanks again!
 
I have been diagnosed at this point with definite Upper Motor Neuron symptoms (spastic, increased reflexes & increased tone) which in my case started a little over 2 years ago. About 1 year in I started with Intermittent Fasciculations which now are more frequent and at this time mainly on the right side of my body.

I am wondering if anyone here has had a "slow progression ALS" as after much reading there is only one known disease that has both Upper and Lower Neuron involvement which of course is ALS.

Just to mention, about the same time the fasciculations started I have had issues getting certain foods that seem to get stuck somewhere going down such as meats, peanut butter, etc. and have moved over to a mainly partial pureed diet.

I still do not have the atrophy or shriveling of the muscles but I am expecting this to eventually occur as things are changing.

Has anyone had Intermittent Fasciculations?

I would like to note, 1 neurologists did state in his report he "indeed viewed a "Fasciculation" in my calf which occurred in August of 2013.

Since no one thus far has given me a concrete diagnoses and they seem to be guessing and waiting, I thought I would throw this info out there for some feedback.

I have filmed 2 incidents which I will be taking to my neruo appointment but would like to hear from anyone who has experienced these issues and ended up truly having ALS.

Thank you for taking the time to read this as I greatly appreciate it!
 
It sounds to me like you are counting your fasciculations as proof of lower motor neuron disease. They are not!

So when we toss out your non-diagnostic fasciculations (twitches) you are left with a diagnosis of an unspecified upper motor neuron disease. This is possibly PLS, which takes years to diagnose and which could possibly develop into ALS somewhere down the road.

Regarding the swallowing issues, most PALS with swallowing issues start with difficulty swallowing liquids, not peanut butter, etc.

Regarding your initial questions--
"2. Are there people who have had fasciculations without atrophy & weakness?"
Yes, millions. Fasciculation is just a fancy term for a twitch. Twitches are extremely common and not diagnostic of any disease. Most people who twitch never develop atrophy or weakness.

"4. The doctors tell me it is not ALS but also state it cannot be ruled out! How can this be?"
If what you have is PLS, it is on the ALS spectrum with PLS (UMN only) off at one end of the spectrum and PMA (LMN only) at the opposite end. In the middle is ALS. Many people with PLS or PMA eventually develop the other type of symptoms and fall into the middle (ALS). I believe the rule of thumb is a wait of five years to see if LMN signs develop before a neuro will call it PLS.

It does not appear that any of your EMGs showed acute and chronic denervation which would have shown if you had LMN disease.
 
First of all I would like to apologize Nikki J as I didn't realize there was a difference between threads & posts which means I have tried several times to start a new thread which have been deleted. Again, my apologies!

Second, I was wondering if anyone is aware or has experienced hyperreflexia and spasticity that at some point goes to hyporeflexia? Thank You!
 
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