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elleforte

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Learn about ALS
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Detroit
This is my first time posting here. I have lurked around and could not find any threads talking about this so I thought I will post. If it is clear that I am not in an ALS / PLS or related category, I will be on my way.

Is anyone aware of a diagnosis that started out this way? Yours or that of someone you know?

The closest I have to a diagnosis is "Motor Neuron Syndrome" or called “Upper Motor Neuron Lesion” characterized by hyperreflexia, clonus, babinsky sign and hoffman sign, as well as spasticity that comes and goes based on my activity level. I have a left-sided foot drop where I am now unable to move my toes at all. I also have a right-side foot drop that is less severe and seems to come and go. Increase of my activity level increases my spasticity and overall disability. It has been 5 years since the labelling of this motor neuron problem (I was age 35) and my symptoms are getting increasingly worse. Even with small activity, I have spasticity that is so severe it impacts my ability to walk and move my arms. I manage my symptoms with a pain management doctor. Pain management helps with the muscle spasms and overall tightness. I do understand that pain is not often associated with PLS/ALS/MND. I use a cane when traveling or concerned about falls.

My CT, MR, and xRays show no lesions on brain or spinal cord - the "Upper Motor Neuron Lesion" diagnosis was made on clinical presentation with doctors saying that imaging machines must not be strong enough to show the lesion. My last brain MRI was in 2012 and it's probably time for another. I dread it - the first go 'round of doctors ended with lots of tears and lots of doctors who were baffled so they accused me - how does one fake a foot drop?!?

As I am getting worse, I am not sure who to go to - what medical specialist? I have been tested for so many things and the EMG findings along with the hyperreflexia, spasticity, foot drop and pathological babinsky and hoffman are the only clear symptoms.

Findings from my EMG:
:arrow:"Electromyographic findings are consistent with left upper motor neuron type weakness in left perineal muscle groups. I do not see any electromyographic evidence of the left perineal nerve palsy or left L5 radiculopathy at this time.

Nerve conduction study shows normal distal latency and conduction velocity of the left perineal nerve."

One of my doctors said, perhaps someday it will become clear that I have "PLS or ALS, or Multiple Sclerosis - that we can only wait and see."

If any of this sounds like anything you are familiar with, I would greatly appreciate your insights and recommendations or recommendations for specialists. I am in the US.

I am negative for Myasthenia Gravis and Charcot-Marie-Tooth.

Best wishes to all and I am so grateful to you for reading this,
Elle
 
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That's a tough one. It could all be down to an issue with terminology (UMN "lesion") and an unwillingness to diagnose an atypical presentation, or the doctor (and I don't know how many you saw during your search for diagnosis) actually detected a lesion via MRI, CT or XRay.

The doctor's mention of ALS/PLS or MS makes me think they're taking a wait and see approach. Have you been back to a neuromuscular specialist since your initial (lack of) diagnosis? With the progression that you've mentioned, there may be more to work with now. I would seek another appointment with a neuro who specializes in MND and/or MS to rule one or the other out. If there is hardship with regards to lack of diagnosis and insurance or resources, they may be more inclined to give you a clearer indication of what it is.

Best wishes
 
Dear ShiftKicker,

Thank you! :cool:

I am so grateful for your reply. Coincidentally, I am traveling to Vancouver for the first time this week. (my anxiety over this business trip affects my symptoms as well)

I have seen 4 neurologists - 2 with specialties in neuromuscular. Upper Motor Neuron Lesion dx was made based on symptoms and EMG only. My CT, MRI, and Xrays are clear. One neuromuscular doc believes the imaging machines cannot detect the lesion - that they are not "strong enough" Another doc believes I have MS but there are no lesions yet. Docs mostly joke "you're not dying so you don't have ALS" - I think that is rude.

It has been wait and see. My Primary Care Doc thinks I should give up on a diagnosis - mainly because of how badly some of my past appointments went. I do agree with the primary doc but I also feel conflicted because I am struggling with working and struggling to hide my symptoms - something needs to change.

I don't want to take time away from people who do certainly have ALS/MND here on this message board. Do you think it's ok if I leave my post here for a day or so to see if by chance anyone has experienced something similar?

Sending you best wishes,
Elle
 
I hope you can find a neuromuscular doctor who will follow you. No answers, wait and see limbo is horrible. Obviously the longer you go without clear ALS the better but worsening neurological symptoms without a full diagnosis is very hard I am sure.

Honestly you have every right to ask questions here. Not sure if anyone is going to have the same experience or not but you have more reason to be here than most who post in this section! Best of luck. Keep us posted
 
Hi Nikki,

Thank you so much for taking the time to reply. Your kindness is deeply appreciated. I'm at a point where answers could change my quality of life. I think, at least. There are some surprising posts here. But, I'm usually the opposite: in complete denial that anything is wrong. Wishing you all the best.
 
Hi Elle,

Sorry you are having such a rough time. I know how terribly frustrating it is when multiple doctors just throw their hands up and shrug.

I am 37 and started having similar symptoms as you in my early 30s. I was dx'd with an upper motor neuron disorder (hereditary spastic paraplegia) by a very prominent ALS doc in 2014. Since then, I have seen a total of 9 neurologists in 5 different states, and the last several un-diagnosed me with HSP. Current dx? Who the heck knows.

The being accused of faking is particularly a fun one. I had a neurologist look at a year-old MRI and tell me that the radiologist had missed some atrophy of the cerebellum. She called him up, while I was in her office, harangued him into saying he agreed with her, and then when she hung up, she asked me if I was faking! And that if I was, I should just tell her now, because she was going to find out eventually. Ummm ... Yes. I was definitely faking brain atrophy on an MRI scan she pulled up on her computer.

There are some good posts in the PLS subforum that you might want to look at. There's a recent one by a poster named DancerGymnast (or something close) who is also young and UMN-undiagnosed.

Also, there is a facebook group run by the Spastic Paraplegia Foundation that deals with both PLS and HSP. I get a lot of good information there, and it moves quickly.

As to which type of doc to see, a physiatrist (also called a Physical Medicine and Rehabilitation doctor) might be able to help you manage symptoms. Shiftkicker wrote a recent post about her visit to one. I think that's in the PLS subforum, too.

Hope you find some answers soon.
--Suzannah
 
Dear Suzzanah,

Thank you for sharing your experience. How horrible that they accused of faking an MRI?! Makes no sense. I do acknowledge that reading some of the posts in this "Do I have ALS?" forum gives me examples of some patients whose anxieties may make a doctor question their motives but I would hope the difference was noticeable, right!? shaking my head. How are you know? I'd love to know and will also check out your posts.

I will check out the forums and groups you recommended - thank you.

I recently saw a post in an "ask a doctor" type forum where someone described symptoms and diagnostic process nearly exact of mine. It was shockingly similar. Sadly, the person ultimately received an ALS diagnosis and was asking a question related to digestive problems.

I hope my path ultimately doesn't follow theirs. I would love to find this person, though. That's partly what led me to post here. Wondering if I may find this person somehow. It was an anonymous-type board and I know it's overall doubtful.

Again, thank you for responding and referring me to information! I hope to learn more about you and hope I can help you in some way.
 
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