A little help please

[Walton2823]

I know that pls is very rare from what I can read but I wanting to know that for those who were diagnosed (I know it take awhile for a definite diagnosis), did the neuro know something wrong during the clinical exam or did they tell you there was nothing wrong

 

[sjaza_granny]

My nero knew there was something wrong from the first. He came to the PLS diagnoses by doing tests to rule other things out. It only took him a couple of months to come up with the diagnoses. I was really lucky to have it found so fast.

 

[Walton2823]

Thank you very much sjaza, i really appreciate you taking the time to respond. That gives me hope because I have no umn symptoms they say. I'm just trying to keep my spirits up cause its very easy to get down when there so much goin on and they don't have a clue what it's.

 

[billbell52]

I have Bulbar PLS. Bulbar ALS progresses quickly. They ruled out MS and Kennedy's disease. They thought it might be MG so I was treated for that for a few months. They finally said Bulbar PLS because I would be near death if I had Bulbar ALS. I feel going to an MDA/ALS clinic definitely speeded up the diagnosis. The other neuros had no clue.

 

[Schmutz]

I saw a total of 12 neurologists - all along the East Coast. They all said something was very wrong but no one would hazard a guess. They ruled out just about everything: MS, Huntington's, you name it.

My current neuro finally said PLS last May. I've gotten a lot of help from this forum.

Anne

 

[Walton2823]

Thank you all for responding and I am truly sorry for your diagnosis. If you all could answer another question I'd appreciate it. If you have true spasticity and you have signs of clonus?

 

[old dog]

My first neuro didn't say the words, "You have nothing wrong." Instead, he said the tests (CT scan, nerve conduction study, blood tests, swallowing study, physical exam) didn't show anything wrong. He said, "Come back in three months." I got tired of waiting and went to another neuro. She ordered another CT scan and extensive (and expensive) blood work. The only thing she was able to determine was my reflexes were brisk on the right side. By this time, I was using a cane or walking sticks to get around and my speech was impaired all the time. She finally referred me to a Neuro-muscular specialist at an MDA-affiliated facility. I was diagnosed there fairly quickly.

Yes, I have spasticity. I'm still not sure what clonus is.

 

[affected]

Clonus (from the Greek for "violent, confused motion") is a series of involuntary, rhythmic, muscular contractions and relaxations. Clonus is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases is, accompanied by spasticity (another form of hyperexcitability).

That's from wiki pedia

My PALS has this in his jaw, and the last week or so it has started in his legs. In the jaw it is really rapid like teeth chattering, in his legs it is slower. Often if I just touch his leg it will just start shuddering up and down maybe 10 -20 times.

My PALS has bulbar onset ALS and the jaw clonus was a very early symptom.

 

[Walton2823]

I would like to know is there a difference between stiffness and spasticity? I can find straight answer on that. And also if you have clonus would you have spasticity.

 

[Tokahfang]

You can have clonus without spasticity, some folks have hyper reflexes to the point of clonus even completely naturally. They aren't unhealthy, they don't develop a disease, their spine just talks too fast.

Spasticity is pretty confusing to folks, I will try and send you a link to one of my more recent explanations. In short, though, spasticity is really something that is happening in your spine. It can produce stiffness, but it is not in itself stiffness. It is easy to find on a thorough clinical exam, though. It is one of those things that you definitionally can't self test, someone else has to do it for you.

My oldest clinical exams showed a small amount of clinical weakness and hyper reflexes. It didn't get better by exercise. I didn't get diagnosed with anything for many years, but the concept that something was wrong was there. I don't think that's a great metric, though - some neuros say "nothing is wrong" to mean you have symptoms, but they are benign. What they say off the cuff has more to do with their bedside manner than anything.

 

[Tokahfang]

Hah, I found a good one:

https://www.alsforums.com/forum/gen...56-q-spasticity-tightness-cpk.html#post167718

Ignore my typo about the microwave and we're good.

 

[Walton2823]

I would like a little input

Has anyone here every been told that they don't have als when in the end I turned out they did. I have heard that that has never happened but just curious if that's true.

 

[affected]

Re: I would like a little input

You keep asking similar questions without telling us much and now are starting new threads for the same kind of questions.

If you have seen a neuro, and he says NO ALS, then be happy and go work out with your doctors what is wrong. They don't say this to trick you, and you can get a second opinion, they don't all agree in the early stages of exactly what is wrong. But if they are telling you nothing is wrong you should dance about!

 

[Walton2823]

Re: I would like a little input

Thank you for you response

 

[Clearwater AL]

I think this is your root question as you posted...("Has anyone here every been told that they don't have als when in the end I turned out they did. I have heard that that has never happened but just curious if that's true.") Here's my answer, and I could be wrong, of all the neurologists and of all of those diagnosed with ALS, the sheer numbers would say that the possibility of that occurring is... yes. One reason is "at that time." As 'affected' wrote, that's why a 2nd opinion is often sought. But... (a "big BUT") it likely would be the rarest of rare circumstances. Probably more rare than ALS is itself. A diagnosis of PLS can take many years... mine was 4.5 years and so many on the PLS Forum have gone longer than that. Finally, there are many, many MNDs that are not ALS. Find patience and enjoy everything you can do and for now accept what you can't. What you can't do now... just may come back. Take a break and give the internet a break.