Possible ALS: 5 Months On

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Tannerman12

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I am 30 years old and 5 months ago I recieved a diagnoses (first of 3 opinions) of possible ALS due to muscle fasciculations all over and spasms primarily in left hand. My symptoms have not changed much since then. Recent EMG at Mayo clinic indicated diffuse fasciculations and diffuse mild neurogenic changes in all tested upper and lower extremity muscles but no fibrillation potentials (nerve damage). EMG previously performed had shown minimal chronic neurogenic changes only in the left deltoid and biceps. I have not observed any weakness or atrophy. No abnormalities in lab work or MRI. I also have slightly brisker reflexes on left side. Is this ALS, BFS, or something else? Looking for some insight. Thanks
 
Derek, unfortunately noone here can interpret your data better than mayo clinic for sure. What did they say ? Your case is a bit different from the " standard" BFS case, but there are other cases like yours for sure. E.G. Check out RainCats posts, he has neurogenic changes allover with muscle spasms and intense fasciculations for many years now. And we have had weird EMG findings here a lot from people who have BFS at the same time as other neuronal findings. If someone shows up with unilateral increased reflexes and abnormal EMG findings it is not a case one can say this is 100% BFS. But regarding your age, the lack of pathological spontaneaus activity on your EMG, the widespreadedness of fasciculations and a time span of 5 months without weakness, ALS seems highly unlikely. I mean really really really unlikely.At mayo clinic, you are at one of the best places to go, so I would just rely on them.
 
Thanks Chrissi for the input. Mayo diagnosed me POSSIBLE ALS due to muscle twitching and asymetrical reflexes (brisker on left side). They also stated there was not enough findings for a solid diagnosis and an EMG in 6 months will assist them with a more definitive diagnosis. I am wondering why they did not mention a possibility of BFS. Would I have chronic nurogenic changes found in EMG if this was BFS? Thanks
 
Hi Derek,agree with Chrissi on all points: we really have Raindog user who has neurogenic changes on EMG and reflexes changes too with some relfexes lost and some increased, but not ALS, and 5 months is about a time at which neurodegenration, should it be ALS, would most probably be evident as clinical weakness, which is not your case as you say.
 
I just wanted to point out that there is a big difference between the word "possible" and the word "probable". Possible means there's a chance and of course, all of us would want to be 100% ruled out of anything bad. But, focus on what Chrissi said - putting all the facts together that she did (age, length of symptoms, no weakness, etc.) and the possibility is likely very small.Wishing you the best of luck that your next visit they will steer you closer to BFS.Mitra
 
It is definitely necessary to keep the bubble up around 99% of the people here. Most BFS people are in such a fragile mental state that they can't handle that. And they shouldn't handle that. At least not until they are ready for it.
 
As someone mentioned above, widespread fasciculation do not rule out ALS at all. Derek, by spasms you mean cramps? What is the nature of your fasciculations (frequency, shape)? 6-12 months is really a standard to see if there is a progression providing there is something abnormal - I find it worrisome that there was a progression of neurogenic changes from 1st to 2nd EMG. What about bulbar muscles, any findings? Pathological reflexes (plantar response aka Babinsky, Hoffman, clonus, jaw jerk)?I could easily interpret your EMG findings as well as Wright but there is no added value if you have an opinion from Mayo.
 
Jbpw, the point is that any online consultation would not give anything good to Derek right now becasue he is on followup. He really has to wait one month more, go to Mayo and see if there is no progression on his EMG. As TwitchyMD said, probably ALS possibility had appeared in his three diagnoses only becasue of some expansion of findings between 1st and 2nd tests. But we all know here many cases when one EMG is 'dirty', but next is more normal. Anyway I think that nobody nowhere on no site in the world can not figure out his third EMG by those two he has already (which would be a real help, becasue for now he knows description of his actual EMG and it still does not suggest damages common for ALS), but on ALS site he also could get a good bucket of you know what kind of info. Which easily can (or can not, I am not a prophet ad Derek seems to be quite rational guy, but many fellows here says that their anxiety part had started after visit on ALS sites) throw anyone into hell of medical anxiety.it is the proverb saying that the road to hell is paved with good intentions.Just would like to ask all of us to be careful with our good intentions. A bit more careful :)
 
without turning this into a pointless argument, the ALS forum has good information, as well as some scary, as does this site.
 
Update- Went to follow up appointment (6 month) at University of Chicago. My Neurologist changed Dx to probable ALS from possible ALS due to some slight weakness in left hand. He did not do another EMG. Other than the weakness, no change in symptoms. He put me on Baclophen and Clanazapam for muscle fasciculations. Went to a more local neurologist a month later and he doughts it's ALS. Dx based on examination of motor skills and reflexes. He believes it's more benign due to muscle twitching all throughout body with minor weakness in left hand and no atrophy. Just want a more consistant Dx. If anyone can recomend an ALS specialist or just a credibal neurologist, that would be helpful. Thank you.
 
Hi Derek,I think some people might have some answers for you however I notice your information is a little bit scarce which makes it quite hard to interpret?For example, how long have you actually had twitches for before you saw the first doctor. Are they everywhere? On one side of the body or primarily in one limb. Also what do you mean by 'spasm' exactly and how often do they occur? Are they painful?What was the gap between your visits to neurologist.I just want to point out that your symptoms are not the norm intro for ALS and you are 30 years old. This makes a big difference. For example, I recently was reading a scientific study conducted on 400 ALS patients and the youngest patient in that group was 33. Should give you an indication of the rarity of getting this under the 40 mark.All the best
 
I can't buy your story for two reasons You said you were diagnosed with possible ALS 5 month ago. You joined in August 2013 so your diagnosis was made around April 2013. So why you waited till August to post your finding ?Also you said a follow up in 6 month. So 6 month from April would be around September again why would you post in January ? You said they diagnosed you with probable ALS because of weakness but ALS is only diagnosed with weakness and finding in emg. Mayo doctors are not idiots to diagnose you without emg I don't mean to be rude but your information don't add up. This post will cause unnecessarily fear for those who are suffering with bfs Please elaborate on that more.
 
In addition , you sound very cool with it. I don't see fear in the way your post is written I hope you will be ok but it's hard to believe it. Possible to probate without emg That tells me two thing You either lying or this whole bfs site should be terminated for giving people misleading information
 
And since august you only have written 1 post ? Two month of my twitching i had 11 post. I ask all the vet to chime in and explain how could this be possible. But either way I wish you the best
 
Resilientgirl,I do not think that attacking Derek’s story, and doubting it is the right way of facing our own fears. I don’t see what’s wrong in his story and why someone would create a hoax over several months. This site is not a kind of closed cocoon where members refuse any contact with the real world, and rejects any story that is not in conformity with the norm here. Plus you said he is either lying or this site should be closed for misleading people. I don’t agree with these two radical options. This site is about people diagnosed with benign fasciculation, and Derek from the beginning was told he is a possible case of ALS. Derek, I wish you well, and since you seem to have two conflicting medical advices by two different neuro one saying probable ALS and the second doubting it’s ALS, you should seek more opinions and keep investigating all this, and please keep us updated. The only strange thing in your story is that in one of your early posts you said a second opinion would be made 6 months later based on a new EMG. Which sounds perfectly logic. So I find it weird for a doctor to jump directly from possible to probable ALS based only on a slight weakness in your hand without performing a new EMG and other tests.Jason.
 
Actually I have one other important question. You mentioned in the first post having had 3 opinions. And you said 1 of 3 opinions was possible ALS. Now you said that one neurologist moved you to probable ALS.Can I assume that it's the same neurologist that said possible to probable?If so I assumed that means the Mayo Clinic may NOT have said this?If that is the case it sounds as if the one neuro at uni of chicago may be fear mongering. Do you know his credentials?One thing in common with possible ALS posts and even the one or two they wound up saying they had ALS on this forum is that there was often a lack of important detail so it's very hard to give you some good feedback.If you get a chance to answer these questions and the few posted by others above I am sure many people can give you a clearer picture based on their experience.
 
I didn't mean to be rude but this post scared me and many other. I m just confused. How could he be given the probable diagnosis from mayo doctor without an emg. ???
 
Raindog is still here and still enjoying life. Still twitching like a trooper too. Getting good relief from neuropathic nerve pain in both legs by medicating on indica dominant cannabis using a vape. Derek i have evidence on on going (chronic) denervation in both lower legs and absent deep tendon reflexes at knee and ankle again in both legs....i have a lower motor neurone type syndrome but in all honesty i'm as good now as i was when it all started over 7 years ago . The only difference i see from what your story tells is that you seem to indicate both upper and lower motor neurone involvement. Now i also have tons of fasciculations in my torso, arms, neck, shoulders, face, eyes etc so it may not be all doom and gloom if my case is anything to go by. Keep your chin up it may not be as bad as you think it might be.
 
We'll I am definite know export but will give my 2 cents.Without REALL WEAKNESS With FASC you do not have ALS. Esp if it's all over. My point: a muscle starts to dies because it is not getting juice. It's not going. So it sends out a distress signal telling your nervousness system to send down nourishment. That's where the twitching comes in. There is real weakness before twitching. Not tired or slow hand or believed weakness but I can't move it tiredI have seen plenty of ALS twitches. Not at all like BFS. not enough juiceKeep in mind that doctors have to keep the door open for ANY diagnosis. Nobody wants to get sued. I need more info on the emg findings. Unless that has changed it can pretty much say. ALS or not. It doe not sound like ALS to me. It kinda sounds like you need to quit reading the notes. They could just be saying things. Y They know ALS when it walks through the door. HOWEVER there are a million motor issues that could be damaging.
 

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