Opinions On symptoms?

[hmacken]

Hi I'm a 25 y/o male ER nurse and have had an interesting year. I'm curious about some symptoms I'm having and anyone's opinion on them. A couple of months ago I started having fasiculations, numbness and tingling in my arms hands and feet, and muscle spasms with perceived weakness in my hands. It's getting difficult to type and hold my phone as well as hold my coffee mug without spilling it and my hands and arms shake when I'm trying to do things like hold a cup or start an IV on a patient. I read the opening post about just one day you just simply can't do anything which is why I said perceived weakness. Also my forearms feel stiff and pained as well as my calves. No apparent atrophy from what I can see, just very fine movements with my hands are becoming ever so difficult. I have seen the Neuro who did a nerve conduction velocity test which was normal, and an MRI without contrast which other than showing degenerative disc disease that was only moderate was fairly normal. Blood tests are normal (electrolytes, inflammation markers such as crp,ck, magnesium was barely elevated) everything seems fairly normal. The Neuro will not see me again until I get it with contrast and has not said anything one way or the other than trying to rule out MS, which was the point of the original MRI's which were clean. I'm not going to lie I've been extremely anxiety ridden as I've had two ALS patients come through my ER recently that are amazing people and it broke my heart to see what their going through. Any advice or thoughts is greatly appreciated.

 

[Vincent]

You seem to have something going on, but not ALS. ALS effects only the motor neurons, there are no sensory issues with this disease. Merry Christmas, you will celebrate a lot more of them too.
Vincent

 

[hmacken]

Thank you for the insights I really appreciate it! You have a merry Christmas as well!!

 

[Teppo]

I agree that this doesn't "sound like" ALS, but it certainly sounds like something, so it is good that you are getting a CNS MRI with contrast to look further. You would not be a normal human if you had no anxiety; I think we all do as we face uncertainty. It is commonly stated, but not true in my opinion, that ALS is a purely motor neuron disease and is not associated with sensory abnormalities.

A number of studies over the past eight or so years have looked specifically for sensory symptoms and signs in documented ALS and they do pop up, when sought, about 25 to 30% of the time. When followed up with electrophysiologic studies and even sural nerve biopsy, the percentage of ALS folks with sensory issues remained at that level. The sensory problems seem to strike large diameter fast sensory nerves.

It is simpler to think that the old dictum that ALS means pure motor neuron dysfunction is true, but the reality doesn't support that teaching. Maybe in 20 or 30 years, we will know that ALS really is pure motor neuron disease and that ALS + sensory abnormalities is some very different process. For the time being, though, the motor neuron progression appears the same in those with and without sensory abnormalities. In my opinion, it is a mistake (although one repeated even by some experienced neurologists) to say that "if sensory symptoms or signs are present, then ALS is not the problem".

A Google Scholar search of keywords "ALS" + "sensory abnormalities" will lead one to a few articles in the medical literature that address this.

Best of luck!

"It ain't what we don't know that gets us in trouble; it's what we do know that ain't so that causes the problems..." Will Rogers

 

[hmacken]

Thank you for the extra information!! I'm debating even going back to the doctor, I have body wide fasiculations now as well as cramps,and I'm having stiffness in my legs, but nothing like I CAN'T physically do anything, it's just harder and I fatigue faster. I did body building for many years and nothing has ever felt heavy but holding my phone up or typing fatigues my arms now but again I can do it. I've pretty much decided to just not worry about it, if it is MS, or ALS their is nothing they can do for it anyways and me blowing more money on doctors who don't care isn't going to help. I'm tired of being scared and as my wife sees me as her support and me being responsible for all our traumas in our ER people brush it off and don't think there's anything wrong and that I can handle anything and think I'm this strong brave man ready for anything. Truth is I'm just really scared, when I die I want it to be something fast and me not knowing it's to going happen. People with ALS are the strongest people I've ever met, and every ALS patient I've ever had has been some of my best patients and so brave. I'm not brave, I would take the cowards way out, I just feel really alone and smile everyday as if my hands don't feel numb and my legs arnt stiff and tingling all the time with body wide fasiculations. Medicine couldn't fix it anyways, I'm just trying to not think about it as best as I can. I'm not man enough to deal with it if it was something bad.

 

[KimT]

Being a nurse you should know that there are treatments for MS. No cure, but treatments. I would want to know if I had an autoimmune disease because dietary changes alone can help. Just my opinion. I think ALS is off the table but I would figure out what is wrong and treat it.

 

[lgelb]

If your hands continue to shake while starting IVs, etc., you're not going to hold your current job, so it will be in your (and your patients') best interests to address the problem, as I think you are aware. It sounds systemic if not psychogenic, and I doubt the MRI w/ contrast will be any less clean. As the diagnostic process proceeds, you might consider Tai Chi/Pilates/massage/PT/hot tubs and such. Degenerative disk disease can flare esp. if the muscles are not doing enough lengthening/stretching.

I agree that sensory abnormalities do not r/o MND, but MND is way down the list of differentials in this case.

 

[Lkaibel]

You are so wrong on MS, there are absolutely treatments for that now. My sister in law has had MS for many years and a variety of treatments have helped to make it so that only now in her 60's is she experiencing significant disability. These days it is also pretty readily diagnosed, not the Dx of elimination only that it was "back in the day".

While sensory issues do not rule out ALS, the tingling aspect makes it MUCH less likely. There are many nueropathies that can cause what you are describing, and even seemingly minor disc issues can take a significant toll. Do keep pushing for answers here, don't do a "poof" on finding on what is going on. ALS however seems highly unlikely.

 

[hmacken]

Thank you for the replys, I'm glad to hear everyone thinks it's most likely not an ALS issue, yes with MS their is absolutely tx just not a cure, but involves a lot of corticosteroids and other imumosuppresive drugs that help manage it despite their own price, I read the opening comments on how many things such as you can't do it one day and it's not how you feel but what you physically can't do which was reassuring then of course I read a story of gentleman who was a bodybuilder like myself who said it started with fasiculations and muscle cramps and things got more difficult as he started doing about half the reps he could then was having trouble running and so on and so forth and took him 5 years to get diagnosed, which is contradictory to the information on this site which is very well put together and seemingly researched so I assumed this gentleman was just the exception. Since I'm having muscle cramps with difficulty walking, holding things for any period of time, and even now this constant fasiculation in my right pectoralis, it haunts the back of my mind, but I've read so many of these it seems more often than not in these kinds of situations it's not ALS just like you guys have researched and generally comment on. I don't think MS is an option since my MRI was clean and you need 2 lesions to diagnose it via that route and I've gone through so many blood tests now that have come back normal I'm not sure what else to go after, and my Neuro won't tell me what he's thinking because he says he wants to keep running different tests which is infuriating because I see him daily as he is also on call 3 days a week for our strokes and many times I have to work with him when a stroke comes in and he tells me within 5 seconds what he thinks about the patient and off to work we go. I've also had meningitis about 6 months ago and I got fasiculatuons after that but of course I didn't think anything about it because I didn't know so I wasn't worried at all. I completely understand though needing to be fair to my patients, when I'm pulling anything out the vial with a syringe because I physically have to stop and concentrate super hard to insert my needle to aspirate the contents I need and as afore mentioned with my IV's. I'm not missing, but it sure is embarrassing how much I shake, your right it's only fair I step away for a second to get something figured out. This is a fantastic forum and you all are fantastic people and I appreciate all the feedback and replies. Reading through this forum has given me a whole new respect for ALS and understanding what is going on and how incredibly strong you guys are. Ill follow up with my doc and keep you guys posted if it's anything interesting besides me simply being crazy or something, hopefully it gets better and I can get back to what I love doing, ER nursing.