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judy.king

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About 3-4 years ago I came to this forum and asked the dreaded question "Do I have ALS". I had some fasciculations and cramping in my feet, balance issues, spasticity in both legs and slight speech changes. I was assured by members that my symptoms were NOT symptoms of ALS and I went merrily on my way. 1-2 years later I was just diagnosed with ALS by Mayo Clinic after my 3rd EMG in 4 years was dirty...the first one was clean and second non-diagnostic. I do not say this to scare anyone but it's very important to understand that the onset of ALS can be different for everyone. Not everyone has sudden foot drop or a hand that doesn't work. Not everyone has speech issues, but ANY speech changes should be evaluated and that workup should include ALS. I have had slowly progressive decline over the last 3 years until last summer when I began to decline more rapidly. Thankfully, I had already seen a neurologist at Mayo who had suspicions of MND and was able to get in quickly to see her. Now I'm being followed at the ALS clinic at Mayo. I've gone from walking with a rollator to full time in a power wheel chair. I can stand and walk some with something to hold on to on each side of me. My arms are much weaker although I still have use of both hands. My speech is worsened somewhat over the last year but I am still able to be understood and on "good days" it is just a slight slurring. My tongue still works, so it's not true that your tongue just lies useless in your mouth. It is that way for some...and not that way for many.

I just want to remind members that we are not physicians and there is no typical presentation of ALS. That's per my neurologist AND neuromuscular specialist. My ALS doc said that in the neuromuscular medical community the prevailing thought is that PLS and ALS are probably the same disease and why some people progress quickly and others don't is not fully understood.

I pray that no one that comes here asking questions ends up positive for ALS but everyone showing NMD symptoms of any kind should be seen and evaluated.
 

Nikki J

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I am extremely sorry for your diagnosis

I am linking your original thread https://www.alsforums.com/forum/do-i-have-als-als/29764-i-can-t-believe-i-m-even-asking.html

I note you in fact had detectable clinical weakness at that time. You received 2 opinions. One indeed reassured you no ALS but said see your doctor. The other said we can’t say. ALS is the less likely outcome see the neuro for a diagnosis.

You then reported a non ALS EMg and improvement of symptoms and were wished luck.

If you had clinical weakness that was ALS then you had some degree of failure. It was obviously very slight then.

Indeed many believe there is an ALS PLS continuum. It is important to remember that the PLS people may have normal EMGs but show abnormalities on clinical exam

If someone has a normal clinical exam or only symmetrical hyperreflexia which is a normal variant they are presenting differently than you did with weakness documented by your physician.

It is important that the MANY anxious people who come here to read see that you had an abnormal exam
 

judy.king

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My point was that presenting symptoms of ALS differ widely between individuals. You can have just some mild clinical weakness in the lower extremities and a normal EMG and still have early ALS. Rather than tell someone their symptoms are NOTHING like ALS, they should be encouraged to see a neurologist for an early exam. Most likely the neurologist will follow them at intervals, even if their symptoms are considered mild. Anytime speech is altered is a red flag. That alone had the Mayo neurologist convinced that it was a PLS/ALS contiuum. When all other imaging is normal, the diagnosis of the ALS continuum must be considered.

I spent tons of time and $$ for 3 years in PT, 1 1/2 years in accupuncture and massage therapy (which made it worse), surgery for cervical stenosis C3-C6 with subsequent fall and C7 fracture. If I had an inkling that this might be ALS I would have made an appointment with an ALS doc for evaluation.

I'm not blaming anyone, just mentioning that we can never say never.
 

Nikki J

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I am sorry for all you went through.

However the vast majority of people posting in this section are young with no real symptoms beyond twitching which is non specific. Anyone who is worried should go to a doctor and get a proper exam and then follow their advice. A 25 yo with twitching and completely normal clinical exam is very different from your situation- a 60 something yo with clinical weakness in 2 areas and a unilateral pathological reflex.

Sometimes diagnoses take a long time as yours did but in every case we have heard here the initial exam showed something. Even in your case the Mayo doctor was not able to make the diagnosis originally.

I don’t want our young anxious people to have an expectation that neuros are going to follow them at intervals as you suggested when everything is normal on exam. Most won’t and that isn’t bad practice.

I think we agree that people should see a doctor rather than seek advice of internet people. They should follow their doctors advice and not ask us to second guess
 

lgelb

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I'm sorry to hear about your diagnosis, Judy.

Speaking as the person in your original thread who said get an EMG, etc., I agree that speech changes that are noted by others without prompting would be a red flag that something is amiss. However, as Nikki notes, most who come here do not report any objective abnormalities (that is, detected by someone other than themselves).

When such abnormalities are noted, as in your case, we do advise seeking appropriate expertise.

In the ALS literature, it is noted that since spine issues as one ages are common, ALS may initially be diagnosed as such, as in your case, and that it can be difficult to parse whether ALS was actually present when the initial EMG(s) that were clean or not alarming were done.

So we can't presume that your initial EMGs were falsely negative. The reality is that we will never know. But even if they were, it wasn't because anyone here steered you wrong.

Anyway, a sad welcome back and we will support you however we can.

Best,
Laurie
 
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Atsugi

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Judy, I'm saddened to see you got a positive diagnosis. In the nine years I've been reading DIHALS posts, it's rare for someone to come back positive after having so many tests and exams that are clean for ALS.

Based on all that you posted:

It is possible that you had ALS and it was different enough that it didn't get spotted for a couple of years, even after two EMGs.

But it's also possible that you didn't have ALS at all when you first came here. Your doctors didn’t see ALS in you during that time. The EMG was clean, too.

You proposed two things I’d like to address. 1.) First, you said that "we can never say never” and 2.) second, you said we should always encourage people to see a neurologist.

My thoughts on #2:

Everyone here who responded to you advised you to “follow up with your doctors.”

But for many (maybe most) people, going back specifically to their neurologist would be an expensive waste of time and money and worry and very possibly miss the true, non-neurological diagnosis.

That’s why I (we?) suggest seeing a PCP MD such as an FP or IM.

My thoughts on #1:

I think probably every doctor in practice has an imaginary lawyer sitting on their shoulder whispering into their brain, “If I get a chance, I’ll destroy everything you ever worked for.” I’m sure you know how many “weasel words” are used in documentation.

Maybe that’s one reason why many people come here—because their doctor didn’t give them the answer they need. They get, “well, I’m 99 percent sure, but you never know!” That’s defensive medicine, meant to keep lawyers away.

But there are many non-ALS people who latch on to the possibility of a positive ALS diagnosis like an obsession. To say to them, “Well, we’re 99 percent sure, but you never know!” would drive them into serious emotional distress.

There are usually clues that a person might have a problem letting go. Some may mention that their own self-diagnosis is more credible than a doctor’s conclusion.

Some will reject a doctor’s findings because they found something on the Internet that they think is more credible than what their doctor said. Often, these folks will have some medical training.

In my opinion (I’m not a doctor), if a visitor to our forum has a problem letting go, and I see no reason to pursue ALS, then a definitive negative declaration will help them improve their mental health.

I’m truly saddened about your diagnosis. To have so many indications saying “not ALS” and then get positive indications a year or two later seems quite rare. I expect you would now be angry. Your words seem angry. You have every right to be angry. It sounds like you’re angry at us/me. I really, really understand that. But I thought I should let you know the reasons why I don’t agree with your two suggestions.
 
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