Concerned about UMN/PLS

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john80

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I first just want to say thanks for all the support this forum has given to everyone. I've read through all the stickies and have some questions. Mostly about UMN onset and/or PLS as that's my most concerning thing at the moment.

I'll begin with a rough timeline of events and Dr's visits. I'm 43 Male. Very athletic before all this.

Symptoms first started May 2023 with left leg feeling of "numbness." Not numbness in the sense I can't feel touch to the skin, but an odd numb type sensation of the leg running down from my knee down my shin. Primary Care Dr ordered a brain MRI which came back clean. Thought it might be nerve entrapment so ordered PT. Went to PT for the month of June and that helped a bit but also started to get minor cramps at night in the back of my thighs. Maybe due from overstretching.

June 2023, Continued PT and left leg improved a bit. Right leg started to get general tightness around the right quad. Noticed it a lot when walking, tennis, biking, etc. Just didn't feel right anymore. Dr ordered panel of blood tests. All came back clean. Also ordered thoracic lumbar spine and that was normal.

July 2023. Continued tightness, muscle twitching body wide. Not constant but maybe 3-5 pulses and then stops. Continued tightness. Saw general neurologist in July and indicated my concerns for possible ALS, and he said didn't think I had anything going on but to get an EMG.

Aug 2023. EMG done and did the leg, arm and was clean. Was told no ALS. At this stage my left leg, thigh were getting tight and fatiguing easily. Walking a few city blocks would cause fatigue/soreness.

Sep 2023. Saw a neuromuscular neurologist that specializes in ALS. Said no ALS due to clean EMG but couldn't rule out upper motor neuron issues due to my brisk reflexes (bilateral 3+) but said he saw no evidence of ALS or PLS on my neuro exam. I have no pathological reflexes (hoffman, babinski, jaw jerk). No spasticity. Was told PLS would cause weakness and my strength tests have been 5/5. Was told I could push through the fatigue and try to improve my stamina, which I have been doing as of late but with lots of discomfort. And when I say "push it" walking more than a mile causing a lot of discomfort/pain.

Oct 2023. Continued muscle tightness, fatigue. I can walk totally normally for shorter distances but my stamina is low. If I walk upwards of one mile fatigue sets in the quads, soreness and achiness. I read the posts on here about feeling like an intense workout (lactic acid) and that's how it feels to me when I push it. I even have a hard time standing for more than 20-30 min now. I can fight the fatigue/soreness/pain and walk/stand but it is painful and uncomfortable, so most of my days now consist of short bursts of walking with a lot of sitting. If I really overdue it, my legs (quads) hurt the next day.

I should also say I have not been sleeping at all since these symptoms started. Very low quality of sleep even with sleep aids such as trazadone. Maybe a few hours of sleep at night for the past few months.

The Drs tell me my anxiety is high and that I should try an anti-anxiety med such as zoloft to help. I am willing to try it but I just don't think this has anything to do with anxiety. I am feeling very defeated lately and I am burning people out including my wife, family as I don't know what's going on.

I guess one of my questions is, I understand PLS/UMN can start in the legs. Is major stiffness/fatigue/soreness/achyness/pain in the legs (primary in quads) one of the presenting symptoms? I read the PLS/UMN stickies that what happens is "resistance to movement" For me, shorter bursts of walking is not a problem and my gait is totally normal and I don't have a feeling of resistance. It's more tightness/fatigue/pain. In fact, this is one of the most frustrating parts of what is happening to me as I can walk freely around the house, out at a restaurant, etc., and anyone that would observe me would say I am fine.

Another question. I was a really great sleeper before all of this started back in May/June. Does PLS/ALS cause circadian rhythm/REM changes? Not in the sense of physical symptoms such as pain, twitching keep you awake, more like your body just can't fall asleep. That's what's happened to me. Everyone tells me it's anxiety but it sure feels like something has been changed with my body to cause this abrupt change with my sleep cycle.

I have a followup with the neuromuscular Dr in a few months. In the meantime I am working with a PT that is trying to help but the PT person I met with this past week said I was a "very unique case" that he hasn't seen before. This makes me more suspicious.

Thanks for your time for anyone who reads this. John
 
Trazo + an SSRI would increase the chance of serotonin syndrome, so I wouldn't do that in your state. But there are lots of non-pharma approaches to possible anxiety, from stretching to meditation to nature walks...whatever chills you out. And seeing a counselor could do no harm. At worst, you say, "Not for me."

For some people, helping the less fortunate helps put things into perspective, even just going into your closet for a donated winter coat or two as the weather gets colder.

I don't see PLS in what you've reported, nor evidently does a knowledgeable neurologist. Presuming the followup goes well, I would start back with a good internist to rule out something more systemic.
 
Thank you for the response. I appreciate the warning on serotonin syndrome. Would you mind sharing your thoughts on insomnia being an early symptom of MND? I just find it so odd that I can't sleep much of anything since this all began. I suppose it could all be linked to my anxiety, but just wanted to know if this was something others struggled with.
 
Worry of course can disturb sleep. And disrupted sleep can lead to more sleep disturbance and worsen symptoms whatever the cause. Also any physical discomfort. As a symptom caused by early mnd I don’t think so Many PALS sleep poorly but that would be secondary to worry and discomfort from immobility and also from deteriorating breathing. But insomnia is so common in general population too
 
Heya-

Insomnia happens for many reasons. It depends on what is actually causing the wakefulness- so your best bet is to speak with a doctor about maybe getting a sleep study. Assuming a neurological cause when there are many many reasons for sleeplessness might not be helpful to you. There are many solutions available, but sometimes it takes a few kicks at the can to figure out what might work. Discounting anxiety is doing you no favours- at the very least it could be muddying the waters and making it hard for your docs to work out what is organic and what is being exacerbated by stress.

What you describe does not fit with a pattern that would cause neuros to be concerned with ALS/PLS/MND. Which is something the neuro did state to you as well. You don't report UMN symptoms- no pathological reflexes, no spastic gait, no abnormal muscular response upon clinical exam. Why assume PLS when you don't actually have any of the hallmark UMN symptoms, and in fact report symptoms (sensory) that point towards something other than a motor neuron disease?
 
Thank you Nikki and ShiftKicker very much for the responses. I thought maybe there was a connection with sleep disturbance/insomnia and early MND onset. I think a sleep study is a good idea and I should pursue it given this has been really disruptive.

Right now I am stumped (including my Drs) at what might be the cause for my symptoms and I've been searching for answers while also listening to my Drs. I don't assume PLS but I did read that it commonly starts in the legs so that got me concerned so I wanted to ask the kind people on this forum what they thought of my symptoms.

I am going to work with PT at this point while I wait for my follow up with my neurologist. Maybe that will help along with getting better sleep.
 
Hello good people and happy holidays. I wanted to provide an update. I saw another neuromuscular neurologist and explained my symptoms in my legs of soreness/achyness/tightness and feelings of weakness when standing and/or walking. He did his evaluation and found hyperflexia (3+) in my knees and pectoralis and suprapatellars/ crossed adductors, but he wasn't concerned about MND as my strength tests were all 5/5 and the main take away from his point was, if it's not weak, it's not ALS or PLS. Other tests such as Hoffman, Babinski, muscle tone and gait were normal. As of now, the only red flag on my clinical exam is my reflexes. The next step is to get MRI C, T and Lumbar Spine.

I wanted to get everyone's take on clinical weakness as I was under the impression that with UMN/PLS a person could maintain strength and essentially pass these strength tests on a neuro exam. Is this true or would you expect the Dr. is correct in that PLS/ALS you would find weakness on an exam? I can still hike and recently did a 4 mile hike on uneven rocky terrain with 2,000 feet elevation gain, and I try to convince myself that everything is okay after I do something like that. Although these hikes are not comfortable and my legs ache afterwards, I can still do them. I can also mountain bike fairly easily but I figure that is because it is more of a seated position.

Thanks for any feedback. John
 
UMN issues are easily detected by a clinical exam. There is an abnormal pattern of weakness despite maintaining some strength- the doctor assesses for this. What you are describing in yourself, and what your doctor has observed are not UMN issues. It sounds like there's a plan in place to look for reasons for your symptoms, but it is in another direction than MND.
 
You have seen 2 neuromuscular specialists and they told you the same thing. Hyper reflexes alone especially bilateral are not really umn findings. They apparently did not find weakness or spasticity as well as normal babinski and hoffman.

PLS people are indeed weak AND spastic. You are neither. PLS people with leg involvement use walkers and wheelchairs

You need to believe your doctors who examined and tested you
 
Thank you Shiftkicker and Nikki. I do believe/trust my Drs even though it may not seem like it with my posts. As I've read through these forums and many people's stories on their symptoms, there seems to be considerable variations at onset which makes me question things. I thought I would ask your opinions on clinical weakness regarding UMN/PLS as that seemed to be a deterministic symptom according to my latest neuro. I know I read somewhere that with UMN/PLS you can maintain strength, but from what I hearing, even if this is the case, it seems to be detectable on exam.

Once again, thank you for your time in addressing my question/concern.
 
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