No diagnosis

[Maggiemoomoo]

Hi I'm new to the forum. Have had my symtoms appearing gradually over the last 2-3 years but only noticed 18 months ago that I had a problem. I have spasticity in legs and lumbar region. Spastic voice. Can walk but balance not good. Have cramps and spasms in the mornings. Fatigue. Seen a neurologist and the only test that came back positive was my EMG and I have acute denervation in my calves and paraspinal muscles. The neuro said that he cannot give me a diagnosis and to return in 6 months. I am in limbo and would like to know what is happening. Oh he also said it's some form of motor neuro but not sure what .

Thanks for reading x

 

[Clearwater AL]

You've had symptoms for 2 or 3 years but the diagnosis process started with your first visit to the Neurologist. As you were told by him... return in 6 months. I'm not saying your Neurologist didn't believe you but, really, telling him/her you've had these symptoms for 2 or 3 years went right in his left ear and out his right (depending what side you were sitting of him). He may have made a note of it but in the 'wonderful world of diagnosis limbo' it began with your first visit and the next 6 months may just be one of several more 6 months or 4 months or 2 months. PLS, on average takes 3 to 5 years for a neurologist to diagnose. I am very surprised that your Neuro told you on just the first visit you have a Motor Neuron
Disorder but then put you off for 6 months. Can understand your frustration.
Do your best to find patience, go on with what 'still works' and be aware of yourself not to develop anxiety. Anxiety will amplify and create symptoms. If things do get significantly worse call and ask for a sooner appointment. Until then... it's your turn to ride the slow boat "Limbo". Many members here have and still are. Hang in there. ;-)

 

[Maggiemoomoo]

Thankyou for your reply. Made me laugh :lol: about in one ear and out the other. I have the emotional lability too which doesn't worry me as I have a good giggle about things. I originally went to see the neuro in January and he told me it was either MS or PLS. I'm a nurse so don't know if he was being a bit more frank with me. Then I had the tests and returned and had a repeat EMG. Luckily the EMG has not changed since January. Thankyou

 

[Vincent]

Welcome to my world. I've been 2 years of being poked,professional and MRIed to death by several neuroscience and still nothing definite. I have been told I have possible ALS, I'm on riluzole, but they want to try IVIG infusions. It is a long,slow, frustrating process but I'm still hoping they find something else. It can be scary, but you're still not done. Keep hope alive.

 

[Dusty7]

Which paraspinal muscles? Lumbar, thoracic, cervical? You say you have spasticity, but the neuro didn’t say that? So your clinical exam showed no upper motor neuron signs? ALS is a diagnosis of exclusion. Have you had a lumbar MRI to rule out a lumbar radiculopathy as the cause of calf and paraspinal radiculopathy?

 

[Maggiemoomoo]

Hi, yes the neuro says I have spasticity in legs. He didn't say where the denervation was in the paraspinal muscles although my lumbar region is very stiff so I'm guessing there. They say I have clonus in ankles and positive babinski sign. My MRI of which I have had 2 (one with contrast and without) was negative. Lumbar puncture was negative. I have no twitching and faciculations once when having acupuncture. I can walk and have been working up till now on a busy ward but am having some time off because of the fatigue. My balance is not good but haven't fallen over since last year. I needed to ask him more questions really but at the time was shocked that I hadn't got a diagnosis as I was convinced he would tell me.. The 1st time I saw him he was very frank and said that it was MS or PLS. :?:

 

[Maggiemoomoo]

Yes Vincent it appears to be quite common within neurology not to get a diagnosis as most of it is done by elimination. X

 

[Maggiemoomoo]

Dusty the MRI included spine so not sure if that included lumbar but doesn't explain the spasticity in voice and slurred speech.

 

[Bad Balance]

Why would you assume that you have PLS?
You may get a broader range of responses in some of the forums above

 

[MaxEidswick]

The 1st neuro I saw in Houston quickly assured my that, no worries, I did not have ALS. 3 months later I was sent to an ALS clinic and got the sentence. Find an ALS clinic or a neuro that specializes. It is a tricky diagnosis.

 

[Maggiemoomoo]

thankyou for your replies. Bad balance I only thought it might be PLS as my neuro said that. I have posted on another forum as you suggested. Thanks again

 

[bigmark1954]

The 1st neuro I saw in Houston quickly assured my that, no worries, I did not have ALS. 3 months later I was sent to an ALS clinic and got the sentence. Find an ALS clinic or a neuro that specializes. It is a tricky diagnosis.

Max.....that is exactly what I had happen. My first neuro even did an emg on me and said it was normal.

 

[MaxEidswick]

>My first neuro even did an emg on me and said it was normal.

I told Appel's EMG guy we should send him to the CIA for enhanced interrogations :-(

 

[IhavePLS]

Hi Maggie,

I initiated a post elsewhere that requested to better understand what is meant by "axial involvement" in PLS -- and whether involvement of axial muscles is a progression of the disease itself, or whether involvement of the axial (spinal and trunk) muscles is somewhat secondary to overuse of the trunk muscles (because the axial muscles are overcompensating for what the legs can no longer do). To make this point, after I had my last lower back surgery, I began to have hip and SI joint pain -- according to my neurosurgeon, both likely caused by overuse (because the hip and SI joint overcompensated for the reduced flexibility in my low back -- which was now immobile because of all the hardware and nuts and bolts installed during 8+ hours of surgery).

I don't know the answer to the above question (axial involvement with PLS), but I see that you may be experiencing this phenomenon.

Me? I've entered a new phase of PLS, in which my lower lumbar, thoracic, neck, and shoulder muscles are in a near-continuous state of spasm. The spasm moves all around (at least THIS makes it "interesting" -- because I never know what to expect day-to-day).

In my case, I had two low back surgeries, the most recent surgery being very significant (hmmm.....as if some back surgeries are NOT significant!?!?!).

For now, the axial involvement -- which is, in fact, different from anything I've experienced prior -- is as bad as the spasticity and pain in my legs. In fact, I've noted that spasm in my shoulders and neck ignites restlessness in my arms and legs (yep, I have this in BOTH my legs and arms --- this is yet another curse).

Mike