Update

[help1127]

So first I want to thank everyone for your time and effort in trying to help with my issues over the last 4 years.

I have been back to USF and UF but still no answers other than they don't believe it's ALS but PLS is not ruled out based on my reflexes. Plus they have said that I have been hyperreflexic since I started seeing them and they don't see any progression.

I know there are others in my same boat here. But for me it's very concerning since my emg's have been normal than not normal and back to normal.

My question is if I had an emg of my left side and showed chronic denervation of my lleft lower leg. The to have a second eng of my right side which came back normal would ALS show on right side if it was on left?

I feel weakness in my left leg especially in my lower leg. My legs shake when coming down stairs or if standing in one place while bent over. The doctor at UF said it could possibly be
1. That's the way I am
2. It's a very slow moving MND
3. It's a spinal disease.

USF has ordered more blood tests as my lacid acid was really high and wants me to have me retake the lab work. Plus I get alot of pain in my right hip area now.

I know ALS has not been mentioned but there is something wrong and it's not obvious yet.

Any feed back from anyone going through the same issues could really help. I really don't know what else to do.

Thank you,

 

[help1127]

Don't seem to get much attention on this forum anymore as it all started as anxiety. Now obviously there is something wrong but they don't know yet. I really just wish I had some answer to what's going on. Ohh I forgot to mention I got the report from UF and the EMG showed isolated chronic reinnervation change in the tibalis anterior. Not denervation sorry for that mix up. Does anyone know what that means? I asked and the answers I got are as I listed above.

I have another appointment with another ALS specialist at USF.

Any insight would really help.

 

[help1127]

Pls

Doctor says they can't rule out PLS but that I don't have ALS. Still can't give me diagnosis..

 

[ShiftKicker]

Mod note: Merged threads. Please continue posting on previous open thread.

 

[help1127]

Do all PLS EMG'S come out clean or normal?

 

[ShiftKicker]

Jury's out on that. My own neurologist indicated UMN signs can be detected via certain EMG readings (but only in combo with other clinical signs) and used this to confirm my own diagnosis- couldn't tell you exactly what it was, but it was not chronic denervation that triggered their concern. That is a question you must ask your neurologist, not here.

There really is a normal range of reflexes, some could be considered "hyper", but which are not pathological. Many healthy people have reflexes on the hyper side. It's only when there is a pattern of abnormal and uneven reflex spread, strength and movement findings that a neurologist will become concerned.

PLS is only indicated when everything else is ruled out and only if there is a clear pattern of pathological upper motor findings. I was never told "normal" with my clinical exams, nor my EMG.

It's clear you are struggling with your health. You have been returning here for years to ask your questions. It should also be abundantly clear that the people here do not have the answers you want, no matter how many times you ask. The pattern of symptoms you have continually posted over the years here do not state ALS to the many people here who have responded to you. It's an exercise in frustration for all involved. The medical experts you need to be consulting will not be found on a message board for those who have ALS or who are caring for someone who does. It's not that the folk here are holding out on you- it's just that they have no answers for you any more. You have made 80 posts. You have been here for 4 years. Many many people have patiently answered your questions over and over. The specialists you have visited have assured you no ALS. You current specialists have not detected any degeneration or progression in the time you've been seeing them. It's unclear what you think the people here can do for you.

 

[help1127]

I truly hear what you are saying regarding people not having anything else to add. I do feel that my symtoms are getting worse. For one my left leg feels dead but I can still use it. It's not numb but feels numb. Plus I get alot of pain in my calf after walking a little. My left hand feels the same way and also shakes at times. The fatigue is to much at times and I just feel like sleeping.

I been working with my neurologist for quite some time now. He assures me it's not ALS but can't rule out PLS as he can't find anything else that could be causing my problems. And that's why I post here too see if there may be others that have similar issues and have received a diagnosis of something.

I believe we need to help our doctors try and figure things out at times because we live in our body's and know what we feel. Plus if there is anything anyone could suggest then I may be able to ask why we haven't tested for that.

It has taken alot of people years to get a diagnosis and I seen other posts where people that are on here chime in and give advice on what their story was and how they came about their diagnosis.

Everyone's path is different but sometimes talking to others going through the same struggles can help alot.

Thanks,
Steve

 

[lgelb]

Here is a list of PLS differentials. I think what some of us are saying is, lurk here if it helps you learn, but please don't repeat the same questions since most here find it difficult to read and type.

Why not walk through this list with your neuro, whom you hopefully trust?

Best,
Laurie

 

[help1127]

I asked him that and he said that he has gone thru all of the different potentials. I wouldn't pay no mind to it if I had a clean clinical and EMG but that's not the case. Plus my left leg is bothering me more and more each day and now my right leg. I don't know exactly what I have but it will soon come to light.

 

[help1127]

Thanks for your responses it means alot.

 

[gooseberry]

Help....did you see Dr. Vu at USF? If so.....he is really good and knows his stuff.

 

[lgelb]

Evidently I posted a broken link so here is a differentials list.

Cervical spondylosis
Progressive multiple sclerosis (MS).
Myelopathy, encephalopathy and other disorders associated with HIV

Hereditary spastic paraparesis (HSP)
Konzo
Neurolathyrism
Spinocerebellar ataxias
Tumors of the spinal cord
Low-grade astrocytoma
Meningioma
Multiple system atrophy
Neurosyphilis
Oligodendroglioma
Olivopontocerebellar atrophy
Parkinson-plus syndromes
ALS
Diffuse Sclerosis
Glioblastoma Multiforme
Low-Grade Astrocytoma
Lyme Disease
Prion-Related Diseases
Tropical Myeloneuropathies
Vitamin B-12 Associated Neurological Diseases

 

[help1127]

Thank you Laurie i had an appointment with him today but had to reschedule as Im getting another insurance plan.