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MangiPNG

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hey everyone,

i'm sure those of you who have ALS get this question all the time but i've been dealing with some freaky neurological symptoms that resemble ALS. I am a 35 yr old male. Here's the break down...

In Dec 08, I went on my nightly walk with my wife and not more than one minute out my calf cramped up. We immediately returned home and when I sat down I noticed fasciculation developing. Within less than 24 hours I had diffuse fasciculations everywhere. The cramping mellowed and didn't restrict me from walking. I saw my doctor the week before for lower back problems I've been dealing with for two years now. He issued an x-ray in the lumbar area that returned normal. After the fasciculations developed my dr issued an MRI of the lumbar area, which again returned normal. This is where it gets interesting...

The night before Christmas I was packing for a trip to visit family and my foot locked up; keep in mind the diffuse fasciculations were still present. I immediately called my doctor who told me to go to the ER b/c I probably had a slipped disk. While on the way to the ER my arm on the same side as the foot started hurting (dual pain). The ER doctor didn't know what was wrong so he sent me home with steroids and percocet.

We had to catch a cab at 4am to the airport, and when i jumped into the cab I began feeling ill, confused, and started to loose feeling in my hands and feet (bi-lateral). I called me doctor again and he said go back to the ER, something is not right. Again, the ER doctor said he couldn't identify what I was dealing with but that it wasn't MS or ALS given the waxing and waning nature of things. Over the next few days I experienced the worst burning pain in the spinal column, arm, groin, legs, etc, and it was accompanied by extreme fatigue. The only thing that helped was the percocet.

I eventually made my way to the neuro's office. At that time he ordered and EMG, NCS, a series of blood work, and an MRI of my brain and C-spine. Everything has returned completely NORMAL, albeit I'm still waiting on more blood work results. I’m getting tested for Lyme disease and other less common things.

The pain, cramping (which was mostly in my foot) and spasms (again, in foot) are more or less gone but I'm still dealing with diffuse fasciculations with much less intensity and frequency than when they first started. All my neuro exams have been normal i.e., reflexes, walking on toes, etc. I have no loss of coordination, muscle strength, balance, etc.

I know people say ALS doesn't exhibit "pain" but from reading other posting on the forum, that's obviously not true. My question: does pain manifest in the early symptoms of ALS? Does my situation sound anything like ALS? Yes, I have read a lot about it ALS and it's typical manifestations, but because I am still dealing with residual spasms, pain and fasciculations, I'm concerned. My neuro said, "you don't see diffuse fasciculations in MS, but you do with ALS." I should have asked him if he was implying that I may have ALS, or if he was just making a point.

Your input and analysis of my condition is appreciated. I have found that people with neurological conditions are generally more helpful and knowledgeable than neurologists, so I'd really appreciate your feedback.

I hope you all are in good spirit.

Best,
MangiPNG
 

rose

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MangiPNG,

I think its nice that youi take nightly walks with your wife.

Although not a doctor, nothing that you wrote even remotely sounds like ALS. Its in your best interest, and that of your wife, to not go down the ALS Fears Road. It leads to nothing but more unfounded fear.

At the top of this forum page there is a "sticky" with requirements for an ALS diagnosis, if you take the time to read it, you will see that this is something you should not be worrying about.

I understand that you feel that what you have experienced resembles ALS, but in my experience, and I'm sure the experience of others on here that actually have ALS, I can assure you that it does not. Maybe according to "Dr Google" but not in real life. Listen to your doctor!

good luck, and keep taking time for your wife and your couple time together. :)
 

BethU

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Reading other postings on this forum can be very misleading, as there is a constant influx of people without ALS and without any symptoms of ALS who post here, and who do not give any indications that they in fact don't have ALS.

It doesn't sound like ALS to me. I don't know anybody with a diagnosed case of ALS whose symptoms started with pain such as you describe. Perhaps Wright has some insight as to what else it might be.
 

wright

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The rapidity of your symptoms and their global nature point away from ALS. The pain that you are experiencing is not the pain that is associated with ALS. You also have tingling which points away from ALS.

Is what brought you here the fasciculations? The diffuse nature of your fasciculations in such a short period of time is not indicative of ALS, especially in light of your normal EMG.

Given the progression of your symptoms, my guess would be something viral or autoimmune in nature . . . and just so you know . . . not all viral illnesses and autoimmune conditions are picked-up by bloodwork. Furthermore, your sensory symptoms along with the clean EMG could point to a small fiber neuropathy (it is difficult even for the nerve conduction study of the EMG to pick-up small fiber neuropathies) , which again could be caused by a virus or something autoimmune.

Relax because your internet searches have steered you in the wrong direction. Stop trying to self-diagnose yourself and leave that up to your physicians, because if you think you might have ALS given what you have shared, then you should definitlely not be on the internet.
 

Zaphoon

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You can find all sorts of things out about ALS with Dr. Google. A few things you may find is that it is insidious in nature. It takes a while for symptoms to become obvious and is one big booger to diagnose.

Clean EMG's and sensory issues (like Wright mentioned) point away from ALS. Give the doc's some time and they'll figure it out. Good luck and I hope you get to feeling better soon!

Zaphoon
 

MangiPNG

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Thank you everyone for your feedback. The reason I came to this forum is because my neuro said that diffuse muscle twitching is a symtpom of ALS, but I wasn't sure if he was implying that I could have it. The twitching, spasms, and crampsing also led me to believe I could be dealing with ALS, but the sensory loss, rapid onset, extreme burning pain, and recovery (with mild residual symptoms) led me to believe there was no way I had ALS. I should have asked my neuro to clarify his statement. He's supposed to call me this week with the bloodwork results, so I'll hit him up then.

before I saw my nuerologist I was convinced I was dealing with poisoning from ingesting ciguatera toxin in fish, as I was in Hawaii prior to this all happening and I ate at least one fish that is commonly implicated for carrying it. My neuro knows nothing about it (and I'd be hard pressed to find a dr on mainland US that does) and there is really no way to diagnosed it, and because it bioaccumulates in our bodies it can flare up if an infected person eats fish, other animal meats or nuts. Strange, eh? It causes all sorts of nerulogical problems, esp the strain in the Pacific.

thanks again for your feedback. I really appreciate it. Maybe I'll sleep better tonight...

Peace,
MangiPNG
 
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