PLS Without UMN Signs

[bluedog]

Is it possible to have PLS with a totally normal clinical exam after 12 years? I had an exam Monday at an ALS clinic and I had no UMN signs or weakness (even my knees were 2+, though sometimes they were 3+ in the past).

 

[Tokahfang]

I'm confused - do you mean 2+ and 3+ for reflexes?

 

[bluedog]

Yes, sorry. My knees reflexes test either 2+ or 3+ bilaterally depending on the neuro doing the exam.

 

[olly]

Hi bluedog.
If you have symptoms of umn disease but no clinical evidence you should get checked by a rheumatologist.
Fibromyalgia can have many symptoms similar to pls such as stiffness,spasms ect.
A friend with fibromyalgia has taken baclofen in the past which is usually prescribed for pls,ms and other umn deseases.

 

[Tokahfang]

Normally hyper reflexes are counted as a minor "UMN Sign", but if you have no others - no spasticity, no weakness after 12 years I certainly wouldn't be worried about it. Many people naturally have or develop brisker reflexes as they age. As UMN signs go, they are kind of like flashing yellow traffic lights - slow down, look around, are things good? If things are good, keep going and don't worry about that intersection.

I guess what has me confused is why PLS would be on your radar at all if your UMN's are by all accounts doing fine. It is a purely UMN disease, that is all there is to it. It is like asking if you have Sneezeitis if your nose is itchy but after many months you still haven't sneezed. It just sounds odd.

 

[bluedog]

Hi Tokahfang,

I'm thinking PLS because despite a long list of symptoms (see below), the neurologists keep saying that I don't have ALS or any other neurological disease. But i do have EMG findings similar to those found in the 20 PLS patients in that white paper that was discussed on this forum recently.

So I'm thinking that I may have PLS or PLS that has recently morphed into ALS. I just can't understand why with some EMG abnormalities and the list of symptoms below that the neurologists think that I am being absurd for thinking that I have a neurological disease.

-Arms and legs stiff and heavy and feel weak (don't test weak clinically)
-Body wide twitching with some focal twitching in right eyelid and left elbow/triceps.
-Atrophy of right masseter and right side of face
-Atrophy of left triceps, small muscles around left elbow, and butt.
-Swallowing problem with solids in esophageal stage.
-Weak voice, with pitch loss and loss of modulation.
-Trouble articulating words.
-Increased saliva.
-Aching/painful tongue.
-Air wasting so run out of breath when talking.
-Hands feel weak but don't test weak clinically.
-Shortness of breath on stairs.
-Insomnia
-Poor lip seal
-Thumbs feel sprained for days after carrying a water bottle while walking (thumb and index finger holding neck of bottle).
-When sitting, butt hurts from weight loss even on soft surfaces.
-Feet hurt for days after I walk barefoot. Seems to be loss of footpad.
-Positional vertigo
-Clumsy, incoordination.
-Off-balance feeling and walking into walls, doors, and other things.

 

[Clearwater AL]

Just a question. As long as you have pursued this, the tremendous amount of money (either you or your insurance company) has spent, if someday in the far future, your are diagnosed with a neurological disorder... what difference will it make to your life the next day?

 

[bluedog]

Hi Al,

If I was independently wealthy, I wouldn't pursue this and would just sit on a beach in Tahiti until I stopped breathing. But I'm not.

I'm trying to hold down a job of 23 years in order to maintain health insurance for my family and me. I have no idea why I haven't been fired yet. I can't get anything done due to the constant vertigo/off-balance feeling. And I had to stop speaking with my staff recently because of the slurring, breathing, and saliva issues, not to mention the horrified looks they have when staring at a guy who, out of the blue eight months ago, showed up to work with half a face. They kind of don't get what's going on. I've got the whole company on edge.

That's just at work. At home, my wife now carries a taser and says she'll use it on me if I try to talk to her.

Also, each weekend, I have the added pleasure of driving 8 hours to LA to continue looking for my heroin addict son who relapsed and is living on the streets.

So the next day after being diagnosed I can quit my job, cash out early on my life insurance in order to pay off bills for the family, and then go sit on a beach somewhere, in a less-romantic, homeless sort of way.

 

[Tokahfang]

Bluedog, that sounds like a very tough situation you are in. I'm very sorry.

PLS, though, can't cause the vast majority of your symptoms. If you were diagnosed with PLS today, then tomorrow they came up and brought to your house an instant total cure, there is very little you'd be able to take off that list. Your reflexes would settle down, possibly you would speak better and have better balance. Everything else on that list would still be there, I think.

 

[AKmom]

I agree with Beki on this. Your list doesn't quite fit PLS. Especially the vertigo. Feeling weak and being weak are two different things. With PLS, when you loose a function due to weakness, its because the muscle can no longer sustain the strength to do it. Thus is shows up in clinical exam.

I am so sorry you have so much on your plate to deal with. Did you know that severe stress can cause a lot of the symptoms you describe? Stress can cause you to feel dizzy. It can cause your muscles to contract into painful spasms. It can cause you to feel weak and tired. Stress is so nasty, it can play tricks on your body and mind. Because it can give you "symptoms" of more serious illness, it can feed itself by making you worry even more about finding a diagnosis. I am not a doctor, and I do not know if your problem is stress or another underlying condition. But your symptoms do not sound like PLS either. I do hope you find what you are looking for. Maybe talk to a doc about helping to reduce some of the stress you are under? All the best to you.

 

[help1127]

You would think that in this day in age there would be some sort of a way to give a specific diagnose. I mean with all the money being poured into this disease we are still at the same place we where 50 years ago. Sad there no hope. "anyone correct me if im wrong"

If you read my post you can see what Im dealing with HELL. No disrespect for those that are living with it but that means you got to the point where it was so obvious it hit the doctor in the face. The reason for this simply is because it only affects 5K people annually.

Bluedog I pray you find health as im trying to do the same.. God bless

 

[help1127]

Sorry for jumping on this thread but I need a little support.
I have beem having body wide twotching for 4 months. Had a clean emg in Nov. Still twitching and feeling weakness on left hand now. Could have the emg on right side miss my left? Please help I dont know how to start a new thread.

 

[affected]

help, your thread (yes you started a new thread there back in December) in DIHALS was closed and yet you have skipped down to here to start asking the same questions again?

Do you think the people using this forum will have forgotten and will just start answering it all yet again?

With respect I will say clearly you need to be going back to your doctor with your concerns.

 

[Clearwater AL]

help1127, On January 30th you got excellent/descriptive advice somewhere else besides here. The guy pegged your situation. You will not take/accept/comprehend any advice you've been given by anyone... so why type another post? You don't have ALS... it's OCD,
out of control, and apparently your Meds aren't working or you're not taking them. Find an OCD Forum. There's where you will find help.

 

[help1127]

Sorry for jomping in. I hate to say but with this all happening yes I have become paranoid. I will be going for a second emg after 4 months with a different Nero. Because the other specialist wont see me until I see a psychiatrist. I feel as im not beeing taken seriously because I mentioned I have anxiety issues. But all I wanted to know from non doctors but pill be alseople who actuall this is if I have my next emg and is clean can it still be als bulbar or umn. The second Nero told me bfs without sn emg and I had to ask him for one.

No umn findings up this point
3 years of abdominal twitching
1 clean emg of right side
Twitching everywhere face, shoulders, neck, face, legsand arms

What do you think without the sarcastic comments please. Im in a dark hole right now.