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rhythman

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Learn about ALS
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CA
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New Brunswick
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I've stayed off the computer, away from Dr. Google (thanks trfogey) and these boards, but I find this a good source of information and I can 'talk' here where people can relate, not just 'listen'. I need to 'talk' today.

I had an appointment yesterday with a highly respected ENT and he basically said that the tongue fasiculations, voice issues and swallowing likely mean als. He said that in his 30 years experience, this is what he's found to be the case.

Before the exam, he asked about any neurological history, both recent and more historical. Here's what I told him:


-(Historically) Several instances of left side clumsiness, stumbling, muscle spasms, muscle pain, 'chills', cramps, etc. over a 30 year period. The last 'bad' episode in 2001 also came with the added symtoms of tongue pulling to 1 side and enhanced gag reflex. Nothing ever found and diagnosed by 2 neuros as possible migraine or possible MS.

-(This time) Late August to end September: Chewing problems and handwriting issues...that's all I noticed. October to now (Dec.2nd): Same symptoms, plus twitching started and spread, tongue facics (he noticed this), clumsiness all limbs, rapid decline in strength in all limbs, nasal voice, excess saliva, excessive yawning, lots of tingling/numbness in limbs and face, wake up every night with all limbs tingling/asleep, and the palms of my hands and bottoms of my feet feel bruised. Previously, my left side was only involved, so I can not say that this is the same at all, but I've felt several of the same sensations in the past.

I asked if my history or anything else (rapid decline-8 weeks-of strength in all limbs, lots of pain, lots of tingling/numbness) might give me hope it's not als and he said something like:

"This doesn't seem like what you had previously and als patients can experience rapid decline in all limbs, as well as lots of pain, tingling and numbness. It's a myth that there are no sensory issues with als. I'm not a neurologist, but based on what I've seen today and what you told me about the past 3 months, I'm strongly leaning towards an als diagnosis. Sorry. Take care. Bye now."

I've always been a strong guy...mentally and physically...but I cried all the way home thinking about how to tell my wife and teenaged daughter. I just didn't expect an ENT to be so positive and to give a diagnosis...it really caught me off guard.

What do you 'guys' think?
 
rhythman,

Sorry for the awful experience you had with your ENT. In my case it was my ENT, a vocal cord specialist in the ENT field, who first talked to me about cranial nerves, etc. She did not attempt to diagnose me though, just to tell me that we were definitely dealing with weakness coming from a problem in this area of my brain.

ALS is diagnosed by ruling everything else out, so you still have much testing left to be done, which could point to another cause. In addition to EMG testing, you're going to need to have a regular brain MRI along with a MRI of just your brainstem, for a closer more specific look.

Infections from the tick borne diseases are treatable and could be a cause, along with a myriad of other scenarios.

I do not feel an ENT is qualified to make such a blanket statement to you, especially when you have other symptoms which do not fit in the classic sense. However, you do have to draw a line somewhere in your medical history, in that everything does not have to be connected. What you had problems with earlier in life are not necessarily part of the picture in what you have wrong now.

Last autumn there was a forum member who's husband was diagnosed with PBP without all of those tests being done. The (very respected) neurologist insisted they didn't need them, that she was "sure" it could be nothing else. As it turned out it WAS something else, He had oral cancer which had been overlooked, and he could have started treatment for it much sooner if the neuro had not been so self assured in her abilities to diagnose without them.

I know its a shock to hear something like this from any doctor, try to keep it together, and work on having more testing ordered and done.

Good luck to you, and please let us know what else you find out.
 
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i think an ent should not diagnose als...call your neuro and tell him/her what the ent said, then go from there. this is not a diagnosis to be given out lightly...and not without getting that emg done.....if that ent thinks it may be als, get that doc to get you in for your emg asap....let them pull some strings so you don't have to wait so long.
 
Let me give you some hope rythman...

There is a neuropathy called CIDP that mainly has motor disfunction, but usually has some sensory components like numbness, tingling, etc. AND, it usually comes on fairly quickly, within weeks or months. In fact, for diagnosis you have to have symptoms for longer than 8 weeks. There are several types that have steady worsening and some where the symptoms come and go in different periods of time. And many CIDP patients have bulbar and cranial symptoms. The BEST part about CIDP is that it is treatable.

I'm not diagnosing, but don't go on the ENT - only a neuromuscular specialist can diagnose.

Best wishes.
 
Thanks for your kind words. That was the worst medical appointment ever and I felt that because he's such a respected ENT that I should just accept his diagnosis and not bother with any more tests, etc. He made it sound like a slam dunk.

The worst part was his matter of fact responses when I wondered if it might possibly be something else. When I specifically inquired about it progressing so fast (8-12 weeks) in all limbs, he made me feel like very rapid progression is not unusual and there's no reason to expect it to slow down. When I asked if being male in early 40's should give me hope, he just stated that he's seen quite a few (relatively) young men with bulbar onset and those age stats you read online don't mean much. I guess his 'bedside' manner is to be honest, but I left with a diagnosis and little hope.
 
An ENT can state his opinion.

I obviously am not even as qualified as an ENT, much less a neuromuscular specialist. BUT, most regular neuros have not even heard of CIDP. I would assume even less ENT's have.

It is not ALS until everything alse has been ruled out. I know it is tough - I am undiagnosed too.

Again, just offering some hope and my opinions. I just prayed for you that it is NOT ALS.
 
Thanks for the that...I really appreciate that.
 
The ENT. or even A ALS doc. would still need an EMG and everything else ruled out. This doc sounds like a real Peach.. I do not think he handled you correctly. So sorry this Doc was so devastating. Please get a more informed opinion.
 
Dear Rhythman,

I completely understand your stress- Our neurologist first said "It looks like ALS" after our first EMG/NCT, only to have everyone else back pedal on the diagnosis, as we began the 2nd opinion/confirmation process. We've learned that there are LOTS of tests to take to rule everything else out. It's unfortunate that the diagnosis was thrown out, because, I know for us, once it's put out there, it's really hard to get out of your head. We now understand why-because virtually all the other diagnoses are at least treatable.

I would encourage you to go to your neurologist, and start the process, and not hang on to the ENT's comments (I know, easier said than done!)

Hang in there
 
Thanks for all your kind words. I guess I just wanted to hear that this guy might not be 100% correct and there was still a possibility it's something besides als.

I'm typically a very positive, upbeat person, but admittedly, I've been worried lately because of rapid changes like this: 8 weeks ago I could run 45 min. without any problem, but a 20 min. stroll with my wife Monday night had me in agony during and after. I had big time cramping in my calves and hamstrings and my heels felt so bruised, every step hurt. When I got home I twitched all over and kept having tightness and spasms all night. Those kinds of things are troubling and coupled with the lousy ENT visit yesterday, I was feeling kinda down.

There are wonderful, amazing people on these boards. :)
 
I´m not a neuro-expert but it doesn´t look like a typical MND-development in my opinion.
There are a lot of other causes that can create similar symptoms and the long period with musclepain/sensory issues
should point away from ALS. I fully understand if you are feeling a bit down after your experiences the last couple of months
I have a lot of the symptoms you described and also quit running 2 months ago because of muscle pain/tightness i my calves/thighs. I´m now twitching everywhere non stop and and also have the symptoms with limbs(arms) asleep at night. My weakness is generalized (like you I believe) and it is frustrating not being able to do the exercise I did a few month ago.

I went to 2 neuros with EMG 6 month ago and although they both said the fasciculations were "inside limits", I´m still not 100%
satisfied but I think that consulting a neuro is the best thing to do before conclusions are made.

Best wishes and please let us know about what you find out. Sharing experiences is a good way to learn more about
different kind of neuro-conditions. Maybe even the neuro-experts can learn something new :)
 
Rhythman,

I can tell you that a qualified nuro would definitely not make any such assumptions, and with your past history and current symptoms/development would probably not even suspect ALS. The ENT comments contradict everything I have seen in the dealings with my nuros (And the last one is a neuromuscular specialist). Also, I can't see how he can dismiss statistics which are based on hard real data.... based on his most likely limited experience?. Note that their are only 500people diagnosed with ALS in Canada per year, and of those, maybe 90 are bulbar onset. Of those, maybe just a few in all of New Brunswick... How many could he have seen?

When your tongue pulled to the side back in 2001, that is weakness caused by a neurological issue which is also bulbar symptoms. You recovered and thus it was definitely not ALS. The odds of what you have now being different from what you had before is pretty low. Like I said before, your symptoms may be different, but most likely the cause is the same, just affecting a different part of your body and with more severity.
 
Thanks for the continued feedback. Reading about others who have similar symptoms, but not als, is comforting.

Buddy77: I did try to 'protest' by stating that I've had neurological issues in the past, and specifically noted that my tongue started coming out crooked in 2001, my gag reflex went nuts and my tongue changed shaped some. He just shrugged and basically reiterated that tongue fasciculations aren't benign and it's most likely als now, despite what my past experiences were.
 
...When I asked if being male in early 40's should give me hope, he just stated that he's seen quite a few (relatively) young men with bulbar onset and those age stats you read online don't mean much.

Wow, that ENT must have some practice (amount of patients he sees)! ALS is a rare disease, and, like it (for him) or not, statistically bulbar onset about 20%, and, among that group it is most common in women older than age 75.

For him to say any of this to you shows poor judgment on his part, so, if his judgment is poor in this area, how qualified should you expect him to be in other areas? It could be a little more understandable if you'd come in with "classic" symptoms, but you don't even have that.

Please ask for a referral to a neuro-muscular specialist, and get started with the needed tests. (I hope by time you read this, you've already gotten an appointment!)

If you look at the top of this forum page, you will see a "sticky" about requirements for an ALS diagnosis. Read it carefully, and you will see how much information is needed for any sort of diagnosis.

About benign versus malignant tongue twitching, from what I've been told, when its the surface of the center of the tongue showing movement, it is more worrisome than if its the edges or front of the tongue.
 
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