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Hello everyone.

First off I want to thank all the kind and knowledgable folks on here for their time and compassion. Reading this forum has been both informative and inspirational. In no way do I want to disrespect or waste the time of the many people battling (PALS and CALS) this difficult disease. I have had the onset of some symptoms and wish to reach out to this community for advice, thoughts and all of the other wonderful things you guys provide.

I'm a 35 Y/O male in very good health (daily runner-marathons, weight lifting) with a previous history significant only for celiac disese-asymptomatic. Onset of infrequent fasiculatons primarily in lower extremities 3months ago. Slow steady increase in frequency and location since. Now nearly constant and located in feet, legs, trunk, shoulders, arms, hands, face. None in tongue or eye/eyelid. Roughly a month ago noticed fatigue/cramping in hands when holding steering wheel on long trips, mixing pancake batter, holding handle of lawn fertilizer. Again slow steady increase in this and while still subjective and mild now notice fatigue when wearing tight gloves at work and writing. Also a month ago i noticed mild fatigue like symptoms in the muscles of facial expresson and chewing. This has been stable.

Up to this point I was minimally concerned. Last week when walking on my heels i noticed weakness in Left ankle dorsiflexion. This has been confirmed by a friend at work (orthopedic surgeon). It is not foot drop-has not caused disabaility but is clinical weakness. Of note I have no pain, numbness, parasthesias of either upper or lower etremities. After suffering new and profound anxiety at home for a week I decided to see my primary care doctor. He was encouraging. Physical exam supported above. Battery of blood tests have all come back normal (thyroid, Ca, na, k, hepatitis, b12/folate and more) He will be speaking to a neurologist and likely will have me in to see one in the coming days or weeks.

I know I need to take a deep breath untill I see the neurologist/get the EMG. As many of you know that is easier said than done. I am trying. I am loving on and cherishing the best 3 year old, 6 year old and wife the world has ever seen (biased opinion i know).

I consider many on this board to be true experts. In many ways more so than neurologists. You guys are living it. Either with the disease or with loved ones with it. I value your thoughts. These are my two main ones currently. 1. The time course and body wide symptoms seem to favor BFS or something else. 2. I can't seem to remedy the leg weakness and fasiculations without sensory findings.

Sorry for the long post but something about expressing myself this fully has already made me feel a little better. Thank you in advance and I think and pray for all of those affected by this disease.

Steve
 
Hi allie/chase dad, welcome to the forum.

It sounds like you're on the right track with your testing, your neuro will probably want to have an EMG done. The one thing I noticed in your posting is you seem to have weakness in different areas of your body, and typically, you'll see it in only one area – as in your foot/ankle.

At any rate, lots of good folks here, so welcome!
 
Allie/Chase Dad,
First, let me just say Thank You for being so level headed and telling us all the details you know. It really helps to have a thorough background rather than someone who comes in freaking out and you can see it in their writing.

Secondly, like Helen said, you are on the right track. It will take a while but that is the point of getting a diagnosis...sometimes it takes many many tests before things are narrowed down correctly. Just make sure you get an MRI of your brain and neck...actually your gp can order these ...see if they will before you meet the neuro since they will have you do this test anyway...will give you something to do in the mean time in between appts.

Also, it is good to keep a log of your symptoms, and make sure you are eating healthy enough to get all vitamins and nutrients. I would also request, since gp did find weakness in your foot, for a Physical Therapy evaluation of your foot. (GP can also order this)They can give you an AFO if you need one or at least give you a couple appts. to work on strengthing it ...which will also help strengthen and help find your diagnosis in the end.

Keep a level head like you are, and try to be patient. I know it is hard...but in many cases...it becomes a wait and see game. Getting P.T. though and MRI are both proactive measures that will help narrow down the possibilities. Good luck to you!
 
Your body wide fasciculations do opined point away from ALS. They are extremely common, especially in fit people doing regular exercise. ALS fasciculations are often not felt and are focused on the nerves that are being damaged by the motor neuron disease.
People tend to get frightened by the fasciculations after reading that they can occur in ALS. They then become hyper vigilant, watching their body, walking on toes, trying to see whether or not they have weakness. Many people have been through this.
In answer to your second question..Don't try and remedy it too enthusiastically, you might do damage to yourself. Do what you can do, don't push too much harder, until you have been seen by a neurologist, had any tests that he may suggest and have some idea of what's going on.
There are hundreds of neurological problems that cause mild fatigue and weakness, including passing viruses.
Sounds nothing like the course of ALS
Enjoy your lovely family and don't let the ALS fear carry you away.
Best wishes
 
Thank you all your kind words and sound advice. I'm always impressed by those that post on this board. I have a neuro appointment and MRIs set up for later in the week. I feel better already. Great advice kmendsley on PT. I know one from a previous running injury and will try to see her. I'm thinking about all of you and truly thankful for the advice.

Steve
 
I am glad that you have scheduled an appt because honestly I think it is way too early for you to start thinking about ALS. I also think it would be a mistake for you to start trying to "remedy" your symptoms. You need to allow a Dr to do the diagnosing and you should not try and play detective with your health.

You mentioned fatigue and cramping during certain activities, how about your running and weight lifting? Has that been impacted at all?

Good luck and let us know how your neuro appt / emg goes.
 
Hi
I probably can't add much to the previous posts except to add to the chorus that it is way too early to be thinking about ALS with the symptoms you have so lucidly detailed. Please remember that fatigue and weakness are different things. Also even weakness can be explained by a huge number of factors. Fasciculations, whilst unnerving, are only significant if they are associated with other symptoms, particularly clinical weakness. You also haven't detailed any UMN symptoms, a good sign. The EMG will give you plenty more answers - if it is clear please accept it as such and do not continue to fret about ALS thereafter. It sounds as though you work in a medical environment, so you should let your medical colleagues guide you through this.
Good luck
Kitchener
 
going to your old PT without a referral and knowing what is wrong isn't the best idea. PT are not physicians--and they may well have you do something that could harm you further. They treat based on a diagnosis--you don't have one yet.

Body-wide fasci as Aly explained, point away from ALS. The foot problem--what did the ortho suggest as the cause/and/or treatment?

The likelihood of this being something with your back is always a possibility, given your age. Lots needs ruled OUT before self-treating any symptoms.

Do your normal routine as you're able--and stop self-testing if you're doing so. It increases anxiety a lot.

All I can suggest is wait it out. Wait for the docs to decide what, if anything, is wrong. Basically, weakness, even clinical, in one extremity may be cause for concern and investigation--but ALS shouldn't even be on your radar at this point.

Good luck to you
 
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