Hope I am out of place...

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New member
Feb 15, 2020
Learn about ALS
Hello Everyone,

In advance I would like to say thank you all for taking the time to read and contribute to the DIHALS section of this forum. The effort and time you all put into this to help others relieve their fears or to navigate their diagnostic journey is inspiring and I'm sure at times frustrating. The fact that you continue to give your time and energy unselfishly despite your afflictions somewhat restores my faith in humanity. After reading some of your responses there is a lot about you all that I truly admire. It's certainly worth mentioning.

I have known 2 people with ALS. My previous business partners wife was diagnosed with ALS and I have seen first-hand how this awful disease can be for the affected individual and their family. The other was a co-worker who was a friend when I was in my early 20's. Frankly, it scared me to death that something (a disease) could do that to a person and that was before I had any symptoms of a problem that worried me, be it ALS or not. In truth those situations are probably feeding into my anxiety about the issue and the fact that I am not getting anywhere with my doctor while I am waiting for my nerve conduction study and EMG test in April.

In trying to be respectful of your time, I will try to make every effort to keep this as short as possible, but I also have trouble denying my nature which is to be thorough. I also realize that some of my symptoms don’t look like ALS (from reading the stickies) but I thought there could possibly be more than one thing going on and I am not NEARLY as educated as some others regarding health issues.

I am 41 years old male with 2 small kids (3 yrs. and 6 weeks old) and have generally been pretty healthy aside from a motorcycle wreck causing my low back issues, low vitamin d and B12 (different times), mthfr, low testosterone, and a bad bout with c-diff after an appendectomy 8 years ago which has wrecked my digestion. I had (am still dealing with) a 3 year bout of depression after a bad business break up in Jan. 2017, the loss of a family member, and much financial distress which followed. Due to this depression (this is not an excuse) my diet was awful, sleep was not great, etc. but a few months back I started exercising, eating right, and trying to correct these issues. My new business was doing well (I work from home on the computer all day running an advertising agency) and my financial worries seemed to be going away…then this mess started after my daughter was born in December.

I also don't go to the doctor much. i used to run to the doctor for every little problem and realized I was driving myself insane so I quit. I have had some of these symptoms for a while. They didn’t really start in January but they seemed to get a lot worse after a double ear infection in December which I was dealing with when my daughter was born along with some new ones that I haven’t ever experienced... which have lasted all 6 weeks of this year. They are as follows:

Headache/dizziness (new): Pretty constant the entire month of January. As of today the headaches have gotten much better but the dizziness still persists but it does seem to be getting better. This is pretty constant. I haven’t fallen or tripped but definitely notice that I sort of feel woozy on my feet. Never had many headaches prior to January.

Left Leg issues (5yrs ago to now): I had a motorcycle wreck about 20 years ago and it really messed up my back. I have 3 discs in my lower back that are just a wreck. In the past 10 years it seemed like a lot of the pain has subsided but about 4-5 years ago I noticed my left leg was getting smaller than my right leg. 3 years ago I noticed a lot of cramping in my foot especially when I would sweat a lot. This seemed to go away on its own but now it’s back with a vengeance. It cramps almost daily now unless I eat a banana every day. I was looking at my left foot as well and it looks like the area where your first joint is on your toes is sunken in. Then I noticed the same thing on my right foot. At first I thought this was atrophy but after reading many responses here I am now not so sure? Maybe just age and underuse or from my disc problems? Additionally the cramping has moved up and I seem to be getting occasional cramps in my hamstring in my left leg about every other day. These are not bad and they go away with a stretch. I have also had very minor cramps in other parts of the body that seemed to go away on their own like my hand muscles, etc. It seems like if I take a potassium supplement or eat bananas all the time they will subside.

Myclonus (6-8yrs ago to now): I think I am using the correct word for this. These are muscle jerks that seem to contract the muscle. Not violently just like a "tick". They mostly happen when I am laying down and resting or watching TV and can generally happen anywhere. Arms, legs, abdomen, back, neck, etc. I noticed them about 6 years ago when my wife was always commenting on how “twitchy” I was. Over the last several years they have gotten worse and better with periods where they are much more pronounced. Right now they are pretty significant. I also get a huge shock before I fall asleep sometimes where its like my whole body will contract all at once.

Widespread Fasciculations (Some always but a lot more since middle of last year and a lot right now): I know twitches mean nothing without weakness but I am not entirely sure what weakness means? (Is that perceived by me or actually an objective test of strength? As far as my GP is concerned, I passed his push/pull, reflex tests and I can still work out in the gym although I am weaker all over from 3 years of sedentary lifestyle (being terribly out of shape) and some weight gain. I also notice sometimes after doing things like playing guitar, that my left hand will feel weird (maybe weakness) and hurt a little.) I also have felt some periodic "weakness" in my arms. Like the muscles will shake at times but this comes and goes as well. But I have been having the fasciculations everywhere lately. Arms, legs, back, face, butt, abdomen, inside my colon, etc. I believe that I have always had them to some degree but started noticing them more sometime last year. They come and go for a few days at a time then will go away. Right now they are pretty pronounced and enough to be worrisome. Earlier today I had a twitch in my right arm that seemed to move my ring finger. This has never happened. Overall i guess I don't feel weak but does the weakness usually happen before or after the twitching? I have read the "Read before posting" but guess i'm still a little confused there.

Muscle Strains (Mid last year?): I’m not really sure how to describe this one but I will try. Several times it seems like I have contracted a muscle and I get severe pain for a few seconds. Like I twist to the right all the way and the muscle on my right side just knots up for a second. Trying to wash my back in the shower my pectoral muscle cramps with intense pain, and recently I yawned (a huge yawn) and a muscle in my throat/neck had this intense deep aching like I pulled it? Feels kind of weird and i'm not sure what to make of it or even how to Google that. I originally thought this could be diet related, sleep related, stress or anxiety but I’m not sure?

Neuropathic Type Pain (Below my legs always, above my waist totally new): As long as I can remember I have had the occasional feeling like a hot knife is poking my feet and toes. I thought this was due to my back injury. Recently that feeling has spread to my entire body. I get them in my hands, feet, face, thighs, abdomen, etc. This was so bad in January that it seemed to almost happen every minute. Not all of them were super painful but a few were out of this world. This symptom (and the headaches and dizziness) is what originally sent me to the doctor. I have also had some burning sensations in my legs but as of a few days ago, all of this has seemed to tone way down and is much more manageable. In the past few days I maybe only get a few of them all day long.

Wake Up Feeling Horrible (10 years): This is has been going on for a long time but much worse recently. When I wake up in the morning it feels like my body has been hit by a truck. I’m so tired some days I cannot make it through the day without falling asleep and I’m in pain for about an hour after I wake up. This usually gets better as the day goes on. Today was no exception.

Swollen Legs (Last Year): There have been a few occasions where I will take my socks off and it seems like my legs are really puffy and swollen where my sock band was which is weird because that area is your shin. No idea what this is?

Heart Issues (Intermittently starting 2 years ago, prominent in January): Had palpitations, heart will seem to race for a few minutes, what I call "heavy heartbeats" that make you feel really weird. These symptoms come in groups. Will stick around for a few days then be gone for months. Recently the came back in January but now they are gone again.

This may seem like a lot when listed out but before January I was getting on ok. I would have maybe one or two of these but not where it was having a big impact on my life. Recently, with all of these symptoms going on all at the same time I have been really depressed and my anxiety about it has ramped up to an all-time high. Especially since my recent visits with the doctors have yielded me absolutely no information at all. All in all I can still do everything that I could before (workout, play guitar, play video games, play with my son, etc.) but I guess i am hyper aware now of any unusual sensation, muscle issue, twitch, ache or pain that may come on after.

I went in to my GP explaining all of the things I have here and my doctor looked sort of puzzled but didn't seem worried. He did some strength tests, hit about 10 places with his little hammer, and basically said I seemed fine. Bloodwork came back all normal (which is kind of a shock considering how crappy I feel) but, his nurse calls me first thing in the morning about 10 days later to say he wants me to go get a head MRI and he wanted me to do it that day. Weird? Why the sudden urgency?

He never mentioned MS but when I got to the Imaging center, they required that you write down your symptoms…the imaging tech said “any history of MS” and I thought “ok my doctor thinks I could have MS.”

My nurse called a few days ago and says, “great news your MRI is clean, now we are going to refer you to a Neurologist.” When I asked why (just wanting to hear his thoughts as to why since he said neurologically I was fine after his office test) she had no idea but did say that he wanted me to have a nerve conduction study and an EMG. This is really when I started Googling all of this stuff (muscle twitching, cramps, left leg smaller than right, Nerve conduction study, EMG, etc.) and ALS came up in an absolutely ridiculous amount of searches related to those things on various reputable sites. Then my thoughts started racing back to my personal experiences with people I know who have had it, and why my doctor wants me to have these tests?… and here I am. Ive worked myself into a frenzy like never before especially when I think about my kids.

I guess its also worth noting that I used to battle a lot of general anxiety when I was in my early 20's but I seemed to get a grip on that and it hasn't been around for the last 20 years. Maybe I am having new issues with an old problem? It's weird being in a place like this mentally because I am not sure if I can trust myself and my thought process and i usually tend to be a very analytical objective person. Is this all anxiety? I honestly don't know?

Currently, I am waiting to get in to a Neurologist (my appointment isn’t until April 21st. …So, does this sound anything like how ALS starts? Even if I do have it I don't want to walk around waiting for my foot to fail with every step I take. Or be overthinking every sensation that happens...Thank you for taking the time reading my novel. I promise that after anyone answers me I will not continue to pester you guys with “what ifs” as I have seen others do frequently. I will discuss accordingly with my Neurologist. Lastly, my heart goes out to all of you who are battling this awful disease and please don't take anything I wrote as complaining. I have NOTHING to complain about compared to anyone here. Thank you all.
It doesn’t sound anything like ALS. Your doctor found normal strength and you can still do everything you could do previously. Sensory symptoms and headaches point away from ALS. Waking up feeling horribly for years could suggest sleep apnea or fibromyalgia. You seem like an anxious guy, so that’s undoubtedly playing into your symptoms.

With the history of lumbar disc problems, it’s worthwhile seeing a neurologist. But there’s no reason for you to be worried about ALS.
Karen, I thought I had beat anxiety in my early twenties but you are right, i'm having some difficulty with it right now and i'm reading too far into things and making connections that aren't there. Actually reading your comment does help a lot and I can try and focus on what I can do to get better and not what might happen. I will work with my Doctor and Neuro. Sincerely thank you for taking the time to read all that and comment and I wish you and your family/caregivers all the best.

Bryan, Karen gives great advice that I think you are wise enough to take. Congrats on your daughter. You will certainly want to be at your best for her.

I will only add, if you cramp up while sweating and it takes a banana to fix, why wait for that to improve your potassium level -- break out the OJ with calcium, and watch your magnesium levels as well. Blood tests don't tell a full story. You can get food lists all over the net. I also suspect there might be times you are dehydrated if you're a gamer.

Short story, if there's not a good balance between potassium, calcium, sodium, and magnesium (B vitamins and iron can also play into some of this), and/or you're not hydrated enough, everything you list can crop up and wax and wane. There are apps where you can enter your diet and see what might be out of whack. Get enough sleep (well, try) and make sure you stretch morning and night. Activities that elongate your muscles like tai chi, swimming, calisthenics can help as well.

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Laurie, I do know "good sense" when I hear it and this is all very good advice. In fact from many of the responses I've read on here over the last few days I think you guys are incredibly knowledgable, insightful, and wise about much more than just ALS. You all need to be charging for this service! Lol. (I said that halfway joking but then thought about it and I don't think anyone would bat an eye at giving $25 for this.) Anyways, even last night i was thinking about coming up with a stretching routine and a way to naturally get the right amount of vitamins everyday in food without trying to take supplements (which historically have never really worked for me that well.) I've just hit the age where I can no longer take health for granted and I need to be very purposeful about what I eat and drink, how much exercise i get, etc. Laurie, I appreciate your response. I am sorry for your loss and wish all the best to you and your family.
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