ALS or BFS???

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ALS or BFS???

Postby Derek on September 7th, 2013, 3:00 pm

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
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Re: ALS or BFS???

Postby chrissi on September 7th, 2013, 3:18 pm

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 raindogs 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.
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Re: ALS or BFS???

Postby Derek on September 7th, 2013, 9:23 pm

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
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Re: ALS or BFS???

Postby StressLess on September 7th, 2013, 10:29 pm

chrissi wrote: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 raindogs 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.


Agree with this. Seems HIGHLY unlikely that this is ALS. Widespread facics alone pretty much rule that out - I also find it strange they're waiting 6 months for your next EMG. Seems like they can't be that worried it's ALS if they're willing to wait that long to retest you.
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Re: ALS or BFS???

Postby StressLess on September 7th, 2013, 10:32 pm

Do you get waxing and waning?
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Re: ALS or BFS???

Postby Yuliasir on September 8th, 2013, 12:07 am

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.
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Re: ALS or BFS???

Postby jpbw on September 8th, 2013, 8:37 am

StressLess wrote:
Agree with this. Seems HIGHLY unlikely that this is ALS. Widespread facics alone pretty much rule that out - I also find it strange they're waiting 6 months for your next EMG. Seems like they can't be that worried it's ALS if they're willing to wait that long to retest you.


Widespread fasics does not rule out ALS whatsoever. The fact that they are waiting 6 months also is no strange - A dx of ALS can take on average 12-18 months to confirm.

Your obvious lack of information is worrying, considering you are passing on this knowledge to someone who is obviously very scared right now.

Derek, while i hope that you are absolutely fine and this is nothing more than BFS, if you need someone to interpret your EMG, i believe "Wright" on the ALS forum is has somewhat of an expertise in reading these and routinely helps out people with unsure diagnoses (i am not affiliated with him in any way, and not able to verify his expertise or guarantee the accuracy of his reading).

Other than that, you are in the best possible hands at the Mayo Clinic and i wish you all the best.
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Re: ALS or BFS???

Postby mwagner on September 8th, 2013, 9:52 am

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
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Re: ALS or BFS???

Postby Yuliasir on September 8th, 2013, 11:32 am

i believe "Wright" on the ALS forum is has somewhat of an expertise in reading these and routinely helps out people with unsure diagnoses


Well, i thought it is a good rule of conduct here not to redicrect nobody to ALS forums just because we all know how they may affect even pretty healthy persons...



Derek, I would like to remind you that you definitely have no clinical progression as you say so please consider 6 month follow up as a normal routine procedure.

We all wish you a good resolution of your next followup visit.
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Re: ALS or BFS???

Postby jpbw on September 8th, 2013, 5:00 pm

Yuliasir wrote:
i believe "Wright" on the ALS forum is has somewhat of an expertise in reading these and routinely helps out people with unsure diagnoses


Well, i thought it is a good rule of conduct here not to redicrect nobody to ALS forums just because we all know how they may affect even pretty healthy persons...



Even if it was to help someone? It is not necessary to keep the bubble up around everyone.
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Re: ALS or BFS???

Postby MarioMangler on September 8th, 2013, 7:24 pm

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.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: ALS or BFS???

Postby TwitchyDoc on September 8th, 2013, 11:44 pm

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.
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Re: ALS or BFS???

Postby Yuliasir on September 9th, 2013, 12:07 am

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 TwitchyDoc 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 :)
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Re: ALS or BFS???

Postby jpbw on September 9th, 2013, 5:06 pm

without turning this into a pointless argument, the ALS forum has good information, as well as some scary, as does this site.
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Re: ALS or BFS???

Postby Derek on January 11th, 2014, 6:04 pm

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.
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Re: ALS or BFS???

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