Timeframe of the disease

[esjcollege08]

Tried to reply to my last thread to keep all in one place, but it has been closed.

I have done a good job staying off this site for the past few weeks. But these damn symptoms won't go away!

Have had 2 EMGs both were "normal" although the second one picked up rare MAUPs.

I haven't been able to clear my throat since late February. Mucous is stuck. Constantly coughing/clearing throat. Voice is still good although do have a little slurring sometimes. Still no problem swallowing liquids. Feels like I can clear right side of the throat better than the left. Clinical exams normal. No babinski or hyper reflexes.

Over the past few weeks, I wake up every morning feeling like I ran 5 miles the night before. Sore in feet, hands, back etc. I get random cramping when sitting down, especially in my lower back. Fasciculations still random and all over, lately the abdomen and perineum which has been really weird. Muscle on pinky side of right hand visibly cramps at all times. Breathing feels really shallow when trying to go to sleep. I do have confirmed sleep apnea in REM sleep only and use CPAP. (I'm not overweight and only 22)....

If this were bulbar als, would the throat clearing issues that began nearly 4 months ago, have become considerably worse by now? I know that bulbar progresses pretty rapidly. I can't find ANY relief. That + fascics + cramping + labored breathing = :?: If it were just trouble clearing throat on its own, I wouldn't be concerned.

I'm still pretty much the same as when I posted in feb, and still hopeful this is something else.

 

[ottawa girl]

Oh college boy - you're still obsessing?

As I told you then - we can explain it to you, but we can't understand it for you -

You came back here today after your rude & smug remarks to the good people here? Do you even remember what you said? Here's a snippet.

..." see, you just gotta stir the fire a little bit and the answers start flowing"


Do you recall ( or appreciate) the time Wright and so many others devoted to trying to help you? Here's what Wright posted. Maybe you never read it the first time.

Re: The longest week of my life

I've copied and pasted every single one of your questions below, so I'm going to answer them for you . . . not that they haven't already been answered . . . but I'll humor you:

*Can you go from difficulty swallowing to the beginning of difficulty with speech in a few weeks?

Answer: NO . . . and, the "swallowing difficulties" you are having are not the swallowing difficulties someone will have with ALS. Liquids is what will initially be hard to swallow and you make no mention of that

*Were the issues with balance and muscle twitching in my extremities the beginning of limb onset ALS, but then it decided effect my swallowing simultaneously without having fully diminished my ability to use my limbs? In other words, how common is bulbar and limb onset simultaneously?

Answer: NO . . . having limb-onset symptoms and bulbar-onset symptoms occur simultaneously in the beginning stages of ALS is almost unheard of. That is not at all how ALS works.

Can balance problems in ALS come before muscle atrophy? Does the disease attack your balance center? Or is the reason for loss of balance due to muscle atrophy?

Answer: YES . . . there is no set way ALS presents itself or progresses. That point is moot, however, because you don't have ALS.
Answer: NO . . . ALS does not affect your balance center, although there are multiple areas of the brain (and the inner ear is also involved) that are responsible for balance, so there is no "balance center." You could certainly have balance issues with leg weakness and spasticity but you have don't have leg weakness or spasticity.
Answer: NO . . . and not sure why you're asking about muscle atrophy because you don't have any in your legs or your neuro would have indicated it.

He chopped it up to anxiety. Which is what I kind of lived with until this balance and swallowing stuff started happening. Does this sound like ALs to you?

Answer: NO.

*Do tongue fasciculations present prior to advanced bulbar function degeneration? In other words, can you have tongue fasciculations before you lose your ability to speak, chew etc? All I have is slight swallowing inability....

Answer: YES . . . but another moot point, given your "swallowing inability" is not the type of swallowing issues that someone with ALS would have in its early stages.

*Is it normal for someone to have body wide fascics for almost a year, then have problems with gait, then swallowing, then right hand weakness without one of those body parts becoming considerably atrophied first? In other words, why am I getting symptoms all over? This is not ALS's typical presentation.

Answer: I have no idea what you have, so I have no idea why you're having body-wide symptms. Actually, your swallowing issue is from anxiety, as are your fasics. Your balance issues can be from a gazillion different things, but ALS isn't one of them, given your story.

*The tongue Fasciculations and the right pinky/ring finger weakness with the muscles contracting in my hand are what have me the most worried. I am now going to have an EMG NCS on my right hand...but meantime, does this sound like bad news? I know you can't diagnose me here, but you can help with the agony of waiting.

Answer: NO . . . and how strange it is that after you got your EMG that you all of sudden have weakness in the limb that didn't get needled. I'm 100% sure that your neuro evaluated your right limb and found no weakness, by the way.

*I am a 22yr old male...so I know it's rare, but not unheard of....I am really starting to lean towards yes...I just don't know what else it could be. I tested negative for myasthenia. Thank you

Statement: You don't know what else it could be? Maybe that's because you're not a neuro. Maybe that's because you didn't go to college for 4 years and got unbelievable grades and earned a spot in a medical school. Maybe that's because you then didn't go through 4 years of medical school. Maybe that's because you then didn't go through residency. Maybe that's because you didn't go through at least one fellowship. Maybe that's because you then didn't have years of experience evaluating patients after all of those grueling years. Maybe that's why.

I close with this: stop trying to diagnose yourself with a condition you clearly do not have and let trained physicians determine what it is you do have. In the meantime, try to be a bit more polite to perfect strangers who actually had the heart and compassion to help you when they clearly were not obliged . . . it's not very endearing . . . and try doing a little more listening than talking, not only here but everywhere in life.
Last edited by wright : 02-28-2013 at 04:45 PM

 

[Nighthawk]

Hey,

The title of your thread is kind of disturbing.
Were you already diagnosed with ALS by an expert on Neuromuscular diseases? No, you weren't, were you? Then, why this title?

Your 2 EMGs came up NORMAL, which means CLEAN which means NO sign of denervation whatsoever that could point to MND.

For an ALS/MND diagnosis you've got to have damage on BOTH (again BOTH) the Upper Motor Neurons (UMN) as well as the Lower Motor Neurons (LMN).

You obviously do NOT have UMN damage because you are NOT showing Hyperreflexia, Ankle Clonus, Babinski Sign, etc. Your Clinical exam came up NORMAL.

Throat mucus is DEFINITIVELY NOT a sign of Bulbar-ALS.
It DOESN'T start that way.
How do I know? Well, because I have Bulbar onset-ALS and that's NOT the way it started.

Bulbar starts most of the time in your tongue.
It starts atrophying, shrinks in size and you no longer can make words. You can't protrude it out of your mouth, you can't even touch your last upper molars with the tip of the tongue.
It looks shrunk, very small. You can't also swallow without choking every time. It becomes increasingly difficult to move food in your mouth with your tongue. It also twitches constantly.

Muscle cramping that you describe could be due to the lack of minerals in your body such as Magnesium.
Have you had blood works showing you if your vitamin/mineral levels are low?
Have you been checked for Thyroid deficiency?

Why on your mind it has to be ALS and not something else?

The INTERNET and the SEARCH ENGINES can NEVER EVER be a replacement for a Doctor or a Neurologist. And...a patient, like many of us, on this board are NO Doctors either.


My advice to you is to quit self diagnosing yourself and leave that in the hands of the experts who spent many years in a Medical School getting the knowledge to deal with diseases.


NH

 

[sadiemae]

Two VERY good posts in response to his questions. Answered and done, wish this thread could be closed too. For thos if you who feel obliged to try and help this person, reply in his visitor page. Any comments here will be ignored by him, just like last time.

 

[ottawa girl]

The last time... And the time before that !

Good idea Sadiemae!

 

[esjcollege08]

The only rude and smug remarks here are coming from you. I tried to reply to my last thread and keep everything in one place, because you would have griped at me if I didn't, I stayed off this site for nearly a month, because you would have griped at me if I didn't. I just had a simple follow up question about characteristics of ALS progression because I have had absolutely no relief from my symptoms, and I still get griped at. I'm not freely posting here anymore like a jerk. I've learned peoples grievances and have taken extra steps to ensure that I am posting in a respectful manner and follow the forum "rules" to make it easy for PALS to reply.

Again, it's called Do I Have ALS? This section is for people who are in limbo land and are seeking personal advice from the people suffering with this disease. The real experts. I'm looking for the one person on this huge forum that might have a similar experience and might be willing and able to share their story with me. there are PALS here who had clean EMgs before being diagnosed. There are PALS here whose first symptoms was throat clearing problems and Fasciculations. By your own admission, everyones experience is unique, So there is genuine concern in my heart, and rightfully so. I completely understand that people have a tough time replying to all these posts. So if that's you, please don't waste your time on me. I understand that regardless of answer here or not, it won't change the outcome, it won't make the disease go away, and no amount of reassurance will make my worry stop. Time is the only thing that will convince me...the more time that goes by without further degeneration the better. That is why i directed this thread to that. how much time went by from first sx to further development.

Again, to anyone who has a hard time writing and is in an advanced stage of the disease, please don't waste your time replying to me. I understand that point very well, and it's an extremely valid one. If you happen to have any insight to the 1 question I originally posted on this thread, and aren't insistent on beating a dead horse, all of which I've already apologized for, then I'd love to hear from you.

Ps NH, thank you for your info. I titled it "timeframe of the disease" because that's what I'm asking about. I'm not inferring that I have the disease, I'm asking what your experience with the timeframe was/is.

Evan

 

[AtTheCircleK]

There really shouldn't be a "Do I have ALS section" because 98% of individuals posting don't have ALS, but without it, people will be flooding the other forums on this site asking if they have ALS.

If you don't have at least one of the cardinal initial symptoms of ALS which accounts for about 85% of individuals (drop foot, profound weakness in hands, or slurred speech) then you will probably be told by members that you don't have ALS, unfortunately that leaves the remaining 15% of cases where initial symptoms were different.

It's a numbers game - do you have a rare onset of an extremely rare disease, which is even rarer for your age group, or do you have something else. You could have it, but you'd be in the 1 in 100 million bracket.