Hello everyone - my name is Sean

[seand777]

hello and Thank you for taking the time to read my email and allow me in your very informative community. My name is Sean and I am a 39 year old male.

I don't want to ask a bunch of questions to try to scare myself or convince myself that I have ALS. I do not have a diagnosis at this point but have some serious concerns in case someone else has experienced something similar.

From an exam from several different Neurologists the following have been noted.
Hyperreflexia, unilateral muscle weakness which started in my leg and is slowly working upwards to my arm along with some noticeable atrophy. Fasciculations, Positive Babinski sign, unilateral ankle clonus. All blood work and imaging is unremarkable.

Just recently I notice that might tongue has mild atrophy on the left and it deviates towards the left side with fasciculations. I get extremely fatigued sometimes where it feels like I was drugged that lasts for about a week. Of course, lightheadedness is no surprise for me either. I did have an EMG 1 year ago before any of the atrophy or fasciculations started which showed a myopathic process. EMG was repeated 7 months ago and was normal. But after seeing the neurologist at the Cleveland Clinic, I go back soon for a special EMG now that there is noticeable atrophy and Upper Motor Neuron Signs.

If you have anything to share about the information I provided, please let me know.

Thanks again for taking the time to read my post and accept me in your wonderful Community. I wish EVERYONE well

Sean

 

[Twinsmom]

Dear Sean,
I'm sorry you've had need to find the forum, but glad you landed here. I'm sure some of our senior PALS will have input for you. As the wife of one with MND all I can say is that it's been a tedious, slow process with not alot of clear answers.

Peace,

 

[halfin]

Hi Sean, welcome to the forum. The form of MND where only upper motor neurons are affected is called PLS, Primary Lateral Sclerosis. Often it eventually progresses to involve the lower motor neurons as well and gets reclassified as ALS, but sometimes it stays as PLS. PLS generally has a slower progression than ALS, and is usually not fatal as the muscles do not deteriorate as with ALS. I think it is harder to diagnose since there are few specific signs other than the ones associated with reflexes. They often have to just wait and see if there is a pattern of progression as expected with the disease. Also they would watch for lower motor neuron signs to develop.

Your new EMG should hopefully shed some light on where you stand. If it is negative that would be a good sign and indicate slow progression or possibly some other disease process. Good luck and feel free to ask more questions here, there are many members with PLS and upper motor neuron dominant ALS.

 

[seand777]

Thank you both for replying to my post. I greatly appreciate it! I do leave tomorrow for the Cleveland Clinic for 2 different Neuro appointments and a special EMG whatever special means.

Is it true that UMN diseases frequently cause a EMG to be normal if LMN's are not involved?

I have had so many tests done already (blood and imaging) and nothing can explain the atrophy, positive Babinski, Unilateral ankle clonus and weakness, brisk reflexes and fasciculations. I was starting to think I was crazy or this was all in my head which is what 2 doctors told me 8 months ago (before the signs of atrophy and fasciculations occurred) and that was VERY frustrating. I know my body and know if something is not right and it isn't! Thankfully, it is a very slow progression but it sucks because it does limit my ability to do stairs easily or get out of a chair without using my hands to pull myself up. Work is harrassing me big time for being on light duty and they don't want to accommodate my light duty anymore.

Did any of you experience issues with Balance?

Best Wishes,

Sean

 

[Twinsmom]

Hi again,
I hope you get some answers this week at the Cleveland Clinic. We definitely understand the frustration and stress that comes with all the tests-but hang in there. As long as there are tests to do to "rule out" then other diagnoses aside from ALS are possible. My husband hasn't really had balance issues, other than how it relates to being weaker...(as you said...getting out of the car, walking stairs etc)

Does your work require you to be physically active, or can you manage your duties deskside? I hope they will work with you.

Let us know how it goes this week.
Peace,
Melody

 

[Moonmark]

Hi Sean--

I wonder if the special EMG they are planning is actually a single fiber EMG, which is typically used to identify myasthenia gravis. Do you know if this diagnosis is being considered?

I, too, have had an almost year long history of slowly progressing muscle weakness, brisk reflexes, twitching and other stuff, but normal EMG in June and no diagnosis yet. just going back every 3-6 months for further assessment.

anyway, good luck with the visit to the Cleveland Clinic. Hopefully you will get some answers and not a diagnosis of ALS.

Sandra

 

[seand777]

Hi again,
I hope you get some answers this week at the Cleveland Clinic. We definitely understand the frustration and stress that comes with all the tests-but hang in there. As long as there are tests to do to "rule out" then other diagnoses aside from ALS are possible. My husband hasn't really had balance issues, other than how it relates to being weaker...(as you said...getting out of the car, walking stairs etc)

Does your work require you to be physically active, or can you manage your duties deskside? I hope they will work with you.

Let us know how it goes this week.
Peace,
Melody

Yes, unfortunately my work does require that I am able to respond to Emergencies since I am in Law Enforcement. They have been accommodating in the past with allowing me to do desk jobs, but they don't want to allow it anymore and recently threatened me with a fit for duty test!

Thank you for the nice reply Melody!

 

[seand777]

Hi Sean--

I wonder if the special EMG they are planning is actually a single fiber EMG, which is typically used to identify myasthenia gravis. Do you know if this diagnosis is being considered?

I, too, have had an almost year long history of slowly progressing muscle weakness, brisk reflexes, twitching and other stuff, but normal EMG in June and no diagnosis yet. just going back every 3-6 months for further assessment.

anyway, good luck with the visit to the Cleveland Clinic. Hopefully you will get some answers and not a diagnosis of ALS.

Sandra

Hi Sandra,

No, Myasthenia Gravis is not being considered because of the SLOW progression of left side muscle atrophy, fasciculations and Babinski. Normally, blood work including a Paraneoplastic panel was done and completely normal. Doctors said that MG is usually a fast progression that doesn't affect motor neuron symptoms and usually indicate a thymoma or thymus gland abnormailty and would show increased CK and or Aldolase levels. I even had a Lumbar puncture with a paraneoplastic panel. Only abnormality was elevated Albumin and Total CSF Protein.

I hope they find out what's going on with your symptoms soon Thank you for the Good Luck Sandra

Sean

 

[hopingforcure]

Hi Sean,
Well the good news are the clean emg.'s and such. I agree with Hal, maybe a UMN dominant problem, or another diagnosed altogether. Remember the UMN symptoms are only diagnosed. through exam. The emg is looking for LMN problems. 2 clean emg.s clearly point in a good direction. Good luck at your appt. we are here for you.

 

[ktmj]

Sean, let me give you something else to think about (as if you need it, right?). I don't know if a Fitness for Duty test is grounds for termination, but research your rights. If you have documented abnormal issues with your doc you should not have any job issues. Most employers have to make reasonable accomodations for health issues.

Without throwing up a lot of red flags, find out what your HR policies are, state laws, etc.

I certainly hope that this is something treatable and not PLS or ALS, but your health should not cost you employment and the benefits.

 

[seand777]

Thank you for the uplifting reply. You are right! Last thing anyone needs is to be harassed by your job and we all know that added stress only worsens the condition.

They wanna fight, I will give them one. I am supposed to be protected under the Reasonable accommodation and rehabilitation act. Especially being a Federal Law Enforcement Officer. The DOJ policy says I am protected under this act and will have to excercise my rights if I have to!

Thanks again for the nice response. I just arrived at my hotel for my Cleveland Clinic appointments tomorrow and I hope I get some answers!

Best Wishes and please keep in touch!


Sean

 

[Just J]

Sean good luck with everything today. Please keep us posted.

First sign of trouble for my husband was a numb foot 2 yrs later he started with balance issues and since he was no longer able to be physically active he did lose muscle. He started using a cane in summer of '08. Oct '09 he began using a walker.