help please.

[phoenix.ar]

hi! m 30 out here ....have been twitching constantly for the past 2 years now , without any clinical weakness,atrophy or any other issues....what bothers me is my EMG report..... it came out abnormal without any possitive sharp waves or fasciculations or denervation.....it rather showed re-innervation( wider amplitudes and increased action potential )....what i know is twitching occurs in reiinervation when nerves grow axons to take over the dead ones....which is denervation....now i am perplexed out here ...that how is it possible that EMG is showing just reinnervation without any signs of denervation....my neuro tells me to move on and just forget bout it as he says its BFS ....icant understand how can one have BFS with abnormal report....any answers ?

 

[Moonmark]

Hi Phoenix,

I do not have any answers for you about the abnormal findings on your EMG. There is a fellow here named Wright who is an expert in the EMG; perhaps he will read this and chime in.

Are you seeing a specialist in neuromuscular diseases? was the EMG conducted by a general neurologist or a neuro specializing in ALS and other neuromuscular diseases? if you just saw a general neuro, you may want to seek a second opinion. are you in Phoenix-- I think there is a Mayo clinic there-- maybe you can get an appointment to see a neurologist there as they are tops in the field of neuromuscular disease.

Good luck--

Sandra

 

[phoenix.ar]

hi! Sandra......thanks for the reply.....yes i have been seeing a specialist neuro....and EMG too was carried out by a specialist on all the limbs.......he's been my neuro for the past 1 yr....had this EMG 6 months back along with loads of blood work......nothing else came up...now when i went to see him again 2 days back , he told me that i should lay my fears to rest as there is no clinical sign of anything else and my emg has not showin anything thats alarming....he said "infact its quite normal"! ....and when i asked him bout having another one he outrightly rejected the idea .......he says 2 years is a long time for als to come forward ......and told me just as ALS is bout ruling out other possibilities test after so that the condition cant be attributed to anything else......the same is the case with BFS!.... and told me although beningn there is still no answer as to what causes it.......dont know what to think now....i hope the guy you talked about gives me some input on this.

thanks again.

 

[trfogey]

Why would you trust the opinion of an unknown stranger on the Internet, whose expertise with EMGs you do not know and cannot investigate, over the professional opinion of your neurologist, who probably has all of his credentials hanging on his office wall for your inspection, not to mention a reputation in the medical community in your area?

Is there a reason that you don't trust your neuro's ten or more years of training and multiple years of practice in the field of neurology over your own slipshod, half-understood, and woefully misinterpreted "research" from the Internet?

Finally, in this day and time when patients sue doctors for malpractice over diagnostic mistakes as casually as you sip your Starbuck's latte, do you really think that he would tell that your EMG was "quite normal" if it wasn't normal?

If you have questions about your neuro's handling of your case, open your wallet and shell out the bucks to see another neurologist. The second opinion you seek will not be found here. Good luck.

 

[phoenix.ar]

well trfogey... i am in no way contradicting or doubting the credentials or the ability of my neurologist,who i know is very learned and apt.....all that i have learned about my condition and the "woefully misinterpreted" information that i have provided here is through him.....i am here not for a second opinion ....which i know, is of no use coz things would turn out to be exactly as they are ,and not any different.....what i am here for is information regarding the readings of my EMG and being diagnosed with BFS.....as my neuro rests his case by telling me that..... he puts ALS & BFS in the same parallel of the unkown....i dont have any anxiety or fear of ALS which i know i dont have.....just trying to find the answers and learn a bit more from people who can put some light on what this is all about.

 

[wright]

Reinnervation of a muscle (in the absence of active denervation) simply means that there was some type of damage to a nerve at some point in your life (it could have happened 6 months ago or 6 years ago or whenever) with subsequent healing of that nerve. If you EMG'd most adults, their EMG would look exactly like your EMG. I'm sure your neuro shared that information with you.

As far as your theory about what causes fasiculations . . . that is, reinnervation . . . that is not entirely correct and you undoubtedly got that off of Google. Fasiculations occur because of nerve irritation and nerve irritation can be caused by a gazillion different things.

Take the advice of your neuro who has actually evaluated you (along with I'm sure hundreds if not thousands of other patients) and be done with this. You got your diagnosis and your clean bill of health, so go enjoy your life. The internet is not where you should go to get your questions answered but I hope my two cents has helped.

 

[ktmj]

phoenix, it takes about 2 years to get used to twitching. I have had BFS since March 1989 - 21 years ago. How do I know? It was during finals week in college and I woke up with chills and twitches all over one night and they have not stopped since. They come and go, some days they pound all day long, and some days hardly there.

So go out and throw down and party for the next 60 years 'cause us benign twitchers are special and it highly impresses the other sex - woohoo.

 

[trfogey]

phoenix.ar,

If you are not concerned about having ALS and you have questions about the diagnostic procedures which resulted in your diagnosis of BFS and you trust your very learned and very experienced neurologist, then why are you here?

Seems to me that you would be far better served to discuss your concerns with people who have the same disease you have and who have undergone the diagnostic process that you have. Sort of comparing apples to apples, if you know what I mean.

And "woefully misinterpreted" is a generous characterization of the reasoning process that would lead someone with a normal EMG and a diagnosis of BFS to start asking questions on an ALS-focused message board. Funny coincidence that, or is it?

 

[phoenix.ar]

hi! all thanks a lot for ur replies.....Wright thanks a lot for ur input.....as far as that reinnervation thi ng goes what he told me is that when the nerve are trying to rebuild sometimes u do get a firing in the muscles which causes fasciculations ...may be i dint put it rite ....sorry bout that

KTMJ ...wow! 21 years ....i am no way even near to that....and frankly speaking havent come to terms with it as yet...

trfogey... i guess u didnt get what i wrote in my post....he rests his case by putting ALS/BFS in the same parallel of the unkown....thats why i am here to seek any valuable information that i can about my report.....as far as my "disease" (dont know to call it that or not) and having apples comparing to apples there are loads out here who can help.

as far as that "woefully misinterpreted" thing goes u clearly meant to quote "over your own slipshod, half-understood, and woefully misinterpreted "research" from the Internet?" un-quote....so it has nothing to do with my knowledge of my EMG report....so dont know if ts a funny coincidence...what say?

 

[trfogey]

Actually, phoenix.ar, there probably aren't many people here that can help you from an objective standpoint (Wright having given his opinion), but I'm sure you'll be able to elicit some sympathy from our contingent of undiagnosed folks. I'm sure you'll also be warmly welcomed by our resident hypochondriacs, who will be happy to compare notes with you on how to search the archives of this site to find the oddball symptoms and cases to fill out the circumstances of a truly exceptional presentation of early ALS.

And, by the way, I'm willing to bet that your "research" about ALS was mostly completed before your neurologist gave you any of his findings. Why else would you be concerned that your neuro appeared to be dismissing some inconsequential abnormalities in your EMG unless you believed that a "clean" EMG meant no abnormalities at all? And why would you be concerned that your EMG wasn't clean anyway, since your doctor had assured you that it was, in your words, quite normal?

Even though BFS and ALS are both diagnosed by eliminating all other causes for the symptoms presented, the fact that your neuro has diagnosed you with BFS means that he has eliminated ALS as a cause for your symptoms. That most likely happened when your EMG results were normal and, between the EMG and his clinical examination, there was insufficient evidence of motor neuron disorders. This would appear, at least to me, to be an occasion for celebration rather than second-guessing the doctor, but I could be a bit old-fashioned that way.

So, are there other symptoms that you feel that your neurologist has not properly accounted for with his BFS diagnosis?

 

[sadiemae]

We went to the Doc today, and man, I wish he would have given us the news you got. Subject of people thinking they have ALS came up, and he said he sees it all the time. What he doesnt see is people who do have it refusing to believe they have it. Telling someone they have ALS is devastating to the patient and doctor, and you would think that telling someone they did not have it would be joyous, however, a lot of people refuse to believe it, and choose to be devastated. If your doctors are short with you, maybe its because they just finished up with a patient who can barely walk, talk, eat, or breathe, and that person was so much more together than you were. Learn to accept your DX of NO ALS, believe me, its a whole lot better than dealing with a REAL DX of ALS. Until our Doc told us it was ALS, we were hanging on to every hope that it was NOT ALS. When it is, IT IS, and when it is not IT IS NOT! We would give anything to be told" YOU DO NOT HAVE ALS," Instead when we go to the doctor, they tell us our next step will be a Trach and Vent. We talk about getting our affairs in order, you talk about when you can get a EMG that will tell you you are dying. Celebrate every day you have without a death sentence hanging over your head, because once you get it, it is hard to celebrate anything.

 

[BarryG]

Well said Lori, my sentiments exactly!

 

[Twinsmom]

Lori, I think you are spot on. My husband is one of those "still undiagnosed- MND/Unspecified" and while frustrating to NOT know what is going on, we are thankful for each appt that we DON'T get a confirmed ALS diagnosis.

Pheonix.ar, you will learn, as you adjust to your BFS diagnosis and become more familiar with neurological conditions, that there is SO MUCH that is still not understood about neurological symptoms/illnesses. This journey continues to remind my husband and I to be thankful for what we do have, and to not "borrow trouble" as my grandmother used to say!
Peace,

 

[phoenix.ar]

hi! all thanks again for all your replies....Lori....i can imagine how you feel and what you are going through.....its not that i dont accept my diagnosis....I ABSOLUTELY DO.....will go by your advice and would try and enjoy each moment as it comes...thanks a ton.

hi! Melody....i totally accede to what you have stated about the unknown out there ...and specially when it comes to something as complex as human brain....guess your grandma was spot on with " borrow trouble"...havent done it so far and i hope to carry on like that for the rest of my life....thanks again.

trfogey....you are simply amazing...what on this whole wide world with the sanity provided would make you think.....i am here to "e - DIAGNOSE" myself with ALS....(WHICH I KNOW I DONT HAVE)...and would be willing to exchange notes with troubled people on this forum whom you label as "hypochondriacs"...thats nothing but a derogatory remark on your part and nothing else.

now as far as that report of myne goes....yes it reads abnormal....and yes my doctor says its "quite normal"....thats why i was here to learn more about it.....and wasn't dissapointed....it was quite nicely explained by WRIGHT( THANKS AGAIN)....so highly appreciate and greatly obliged to all the helpful members on this forum.

now coming on to you....202 posts.....and going by what i have read on other threads so far more than 50% are straight on confrontations,derogations,insolence & humiliations..... when you can't write something helpful ( which this forum- do i have ALS- is all about) ...why dont you abstain from writing anything....coz frankly speaking no body cares two hoots as to what you say.

 

[trfogey]

phoenix.az,

Took you this long to read all my posts, eh? Well, I hope you got some educational or entertainment value for the time you spent, though I doubt you did.

Your actions belie your words, bellicose one. As far as ALS sites on the Internet go, this is a prominent site, but compared to other sites with neurological information, we're small potatoes. Some of those sites have forums devoted to BFS, where you would be far more likely to find people in situations similar to yours and perhaps even doctors who could explain the nuances of EMG interpretation to you (no disrespect intended to Wright). In the time you spent looking through my posting history, you could have found several sites like that, so if you haven't yet done that search, I'd highly recommend it to you.

Some folks who answer posts in this forum are the soothing, sympathetic type. Not me. I'm the dash of cold water in the face type. If you have an honest question, I'll happily answer it for you. The answer will be short and to the point, with no spoonful of sugar to help the medicine go down. No apologies for that -- if you want handholding, pay your doctor or your minister to do it.

If, on the other hand, there's something that doesn't ring true about your story, then, yes, I'm likely to confront you with the inconsistencies in your tales. There are two reasons for that. First, to give you are chance to correct yourself if what you said wasn't really what you meant. Second, if you are spinning a yarn, other people might also see the inconsistencies you're shoveling and not spend the trouble to give a serious answer to a bogus question.

Some folks, when they are shown the inconsistency in their thinking, see that bad information or bad reasoning is causing all their worries and are able to move on. Others get all puffed up at being challenged and double down on foolish. Which category do you fall into, phoenix.az?