3 years of symptoms. Slow progressing?

[hezzera]

Hi there,


Long time lurker….I tried avoiding ever posting in here, because I know how repetitive these posts must seem. And I hate to sound like an anxiety filled cry baby. But I think I’ve been pretty patient with my symptoms (going on 3 years) and I’m in another anxiety panic about them lately. I’ll try to be as brief as possible so that this isn’t way too long to read.
It all started about 3 years ago- around Aug 2012. I can’t really remember what the first symptom was. The very first few I remember are one day I noticed my ring and pinky finger (can’t remember which hand) felt sluggish. When I would make a fist really tight and then release, those 2 fingers would release slower than the rest. Not my imagination. But this also came and went twice and went away.
I think the second symptom I noticed was a slight tight feeling around my neck. Only lasted a couple days as well.
Fast forward probably half a year later- I went through a really tough time with anxiety and worry as my husband was going through being diagnosed with ulcerative colitis. I don’t know why the worry hit me so hard- but it consumed me. I’d wake up in the middle of the night shaking and crying. (Keep in mind I’ve always been a worrier, my entire life)
Shortly after this, all MY symptoms started to hit. Because I didn’t document what hit first, I can’t really say what happened FIRST. I can’t remember if I got the funny feeling back in my fingers first or my leg issue started.
I suppose I’ll just list it all out- because lists are easier to browse than rambling paragraphs, right?
-woke up one morning and the outer part of my R leg from the knee down to my outer 3 toes felt “off”. It wasn’t weak, numb, tingly….just..off. it was definitely noticeable and NOT imagined.
-ring and pinky fingers on EACH hand feel “off”. Somewhat stiffer than the rest of my fingers and clumsy. This is on and off and not constant. It’ll go away for a while and then just randomly hit again….sometimes both my entire hands feel clumsy and uncoordinated. Never clinically weak…
-I started to develop a clicking in my throat when I swallow. It used to be very mild- now it’s every time I swallow. Has been going on for the entire 3 years…developed more of a crunch now. Sometimes I get really bad neck pain as well. I know I have GERD because I wake up in the middle of the night with acid bursting in my throat/mouth. Maybe this is the cause? Lately it feels as if food is having a tougher time going down when I swallow now. Like, I can feel it sitting in my esophagus for a good hour or two after I eat. I clear my throat A LOT as well. But maybe I’ve always done this….Past couple days I feel like I’m having slight trouble breathing…
-TWITCHING. I got the twitching towards the beginning when all this started. It was hitting me everywhere. I didn’t think much of it until I started googling of course. Still have twitches…all over. Sometimes I get a lot, sometimes they subside for a while. Lately…..a lot. Even my tongue now. Only randomly. Never really noticed that before. I do have bite marks on the sides of my tongue- but I kind of have a big tongue, and tend to press it against my teeth when I worry….so this could be it?

These are the major symptoms I think point towards ALS. When all this first started I had a LOT of sensory symptoms- blurry vision, painful joint pain, migrating weakness, cramps, tongue felt weird, shooting nerves, weird visions when I’d fall asleep, stiff neck, burning or “wet” feeling on random parts of my body….

I don’t have any of these sensory or pain symptoms now. Mostly- I’ll get a random “wet” or burning feeling on my skin (rare), sometimes my jaw feels fatigued when talking/eating but only lasts a couple days, I have horrendous hip flexor pain occasionally, stiff legs occasionally, pinched nerve pain at the bottom of my back (so much so that I find it hard to sit in my office chair all day)….but all these come and go.

Ok- so now lets get to why I think I have ALS. Even though the clumsiness in my hands comes and goes…I feel like maybe this is the beginning stages and eventually the clumsiness and perceived weakness will hit one day and never leave? I haven’t noticed any atrophy…but then again I try not to look too much because I don’t want to obsess over it. When I look at the inside of my palm, the “meaty” part at the bottom of my fingers caves in on all fingers. More noticeable if my hands are super cold or dry. Beginning of atrophy? Maybe that’s why my hands haven’t fully stopped working yet? My R leg still feels “off”. I can do all the usual strength tests just fine…stand on my toes, heels, one foot…whatever. But I feel like maybe this is the beginning of drop foot because it’s like…a perceived weakness feeling in my ankle? Even though I FEEL I have normal strength and it hasn’t gotten worse…when I walk, I feel a slight pull in the side of my leg…it’s so hard to explain and I haven’t seen ANYONE who has ever described something like this. I went through a lazy stage where I laid on that side ALL THE TIME in front of the tv…for like…a year straight…maybe I pinched a nerve somewhere on that side?
I feel like I have atrophy in my quad muscles. When I lift my leg up and bend at the knee- I appears thinner than I remember. And when I squat down for longer than a minute…I feel burning there and in my legs…one time I tried to get up and fell right over. They just seem lightly sore all the time and easily exerted.
The twitching as well. Still have that. Everywhere. It’s never isolated to one place- but it’s come on with a fury lately. So have all these symptoms. It’s like..they all subside for a while but then randomly hit angrily. I understand ALS symptoms don’t “come and go”…but I feel like, in the beginning stages- maybe they can?

I went to a couple of neurologists 3 months after this all started and the first one just tried to pin it as anxiety…the 2nd one did an EMG and these were his findings “the above findings are indicative of a left median mononeuropathy at the wrist (as may be seen in carpal tunnel syndrome), mild in nature. No electrodiagnostic evidence for a neuropathic process or lumbosacral radiculopathy was found in the RLE”
I didn’t feel super confident from these results because my hand doesn’t HURT. So how can it be carpal tunnel?
Either way, I haven’t been to a dr since because my symptoms seem to subsibe to the point where I forget about them…but then come back to remind me. I don’t know why this time I’m freaking out about it way more. I think because the twitching, hand “perceived weakness”, tongue twitching, throat issues seem slightly worse. So it makes me feel like something is progressing.
What’s weird is when I went on vacation, my arm fatigue was really bad before we left. To the point where I didn’t want to carry my super heavy suitcase. Yet while on vacation- all my symptoms seem to have subsided. Then slowly on the plane ride home, they all came back.

Sigh- well so much for keeping this short. It’s hard to keep 3 years of symptoms short I guess. I apologize, truly. This is seriously taking over my life to the point where I’ve told my husband I don’t know if I want to do our planned move from IL to AZ next month because I’m afraid of being diagnosed with something and being away from family. Obviously he’s not too happy about this.
I’m considering finding a neuromuscular dr who specializes in ALS? Seeing a small town neurologist didn’t give me TOO much confidence…..

Ok, I’ll leave you with this question, could these be signs of early onset ALS? Slow progressing? I was 30 when this started, I have bad high cholesterol…so I figure this is slowing things down to where it isn’t obvious yet. lol. If the signs of ALS are so clear- obvious clinical weakness….why does it take so long to diagnose someone?

Whew- I’m finally done. Much respect to you all. Byebye. <3

-Heather

 

[hezzera]

I should add that I've always had sit down computer jobs. So I'm sitting in hard office chairs constantly. I’ve had on and off pinched nerves and back pain because of this throughout the years. And I rest my arms on my desk constantly as well….don’t know if this would have anything to do with any of this…..sigh.

 

[Atsugi]

Heather, nothing you wrote said ALS. Everything you wrote said anxiety. Neurologists have examined you, but you want to to second guess them by coming to an Internet site? Your anxiety is interfering with your decision-making.

Your anxiety is now interfering with your life so much that you are refusing to move. That's a serious problem. You need to get this fixed. Any GP doctor, an MD, can get you moving in the right direction to fix that.

 

[hezzera]

I deserve that. I know my story really screams anxiety….and there’s no doubt I have debilitating anxiety on top of whatever it is I’m going through.
But I feel like this anxiety is BECAUSE of the symptoms that developed, not the other way around. I’ve been a worrier all my life and have never developed symptoms like THIS because of it. I had no clue about muscular diseases or most autoimmune diseases before this started- and never worried about them once. Now it floats around my head constantly.
My random hand clumsiness comes on when I’m NOT anxious. I can be taking a walk with my dogs- come home to do laundry and notice my fingers are acting sloppy. And then it fades the next day. Then returns a couple weeks later with whole hand clumsiness for a week or longer. Then it fades some, and the cycle repeats.
I’m definitely not trying to argue with you. And I apologize if it comes off that way. I’m just frustrated as I’ve tried to be patient and calm headed about these things- as they seem to have “calm periods”…but then these flare ups scare me once again.
I guess the only reason I’m worried is because I read about how people say they have symptoms for 7 years or so before being diagnosed.
If ALS symptoms were so obvious- how come people live 7 years with symptoms and not have a diagnosis sooner? I guess that’s what keeps me worrying if I’m in that “group”
Plus these twitches and weird muscle perceived weakness feelings keep me glued to my computer. I hate it. I really do.

 

[Dusty7]

"My random hand clumsiness comes...And then it fades the next day. Then returns a couple weeks later with whole hand clumsiness for a week or longer. Then it fades some, and the cycle repeats."
Does not sound at all like an ALS symptom.

"I read about how people say they have symptoms for 7 years or so before being diagnosed." Can you cite the source of this story?

"Plus these twitches and weird muscle perceived weakness feelings keep me glued to my computer." So, non-ALS symptoms keep you glued to your computer... but you don't think anxiety is causing your symptoms.

We know it is not your symptoms causing anxiety because you do not talk of any ALS symptoms. Plus your neurologists couldn't find any ALS symptoms and Atsugi, who is very knowledgeable about ALS, didn't hear any ALS symptoms in your story. Since you have no ALS symptoms, they are not the source of your anxiety. Your anxiety is the source of your symptoms. Talk to your PCP about this.

 

[lgelb]

Illinois, it is not true that lack of pain rules out carpal tunnel. Since you have a test demonstrating it, why not start treating it w/ specific exercises morning/noon/night, better hand/wrist support for the computer, e.g. articulating arm attachments, massage, possibly an eval w/ a hand therapist, mild heat...

Same for GERD -- it's treatable, and you'll never know how much it's causing your sx until you treat it, no? (It's also a risk factor for more severe GI probs down the line, so worth treating on that basis, too.)

In short, why are these targeted interventions toward real problems less productive than trying to build them up into MND via the Internet? That was a rhetorical question.

You say your anxiety has never caused symptoms, and I believe you, but now you have real sx and it's not at all unusual for our wayward brains to extend those into other areas of the body. The fact that your sx abated on vacation is rather telling, don't you think?

I don't know where the 7 years comes from, either, but you don't have anything resembling MND.

As for cholesterol, it's not holding anything at bay. That's not the way it works. (But if you have dyslipidemia at 33, you could consider a coronary calcium scan to illuminate your cardiovascular risk and whether you should be treating high cholesterol.)

So, done. Three real health problems to tackle. If the fictional one remains after that, definitely see someone for health anxiety, as Mike & Dusty suggest. You don't want a fictional entity controlling your long life ahead with your husband.

All the best.
--Laurie

 

[affected]

People who take 7 years to be diagnosed have PLS. They are very disabled and they are told by their doctors early in the process that they have a motor neurone disease. They do not present the symptoms you do.

All the best, your concerns have been clearly answered. You are definitely in the wrong place here, which is wonderful news. Anxiety can be treated if you will lay it all out for your doctors and work with them.

 

[hezzera]

Thanks. I'm sorry if it seemed I was pressing for more answers from you all- it was more curiosity from my years of online searching that I felt I should ask a few more questions that were on my mind. I appreciate the time you've all taken to reply to my post. I can't talk to anyone in my personal life about my ALS fears because they're not quite sure how it works, apparently I'm not either. And I appreciate the information. I've just scheduled an appointment with a new general dr to get blood tests done for vitamin deficiencies and I'm also going to request anxiety meds to see if that alleviates some of my symptoms. I appreciate the coronary calcium scan advice- I will keep that in mind for a future visit. Thanks again.

 

[hezzera]

Also- I will most likely be back with an update in the future, either way. If it doesn't turn out to be anything nasty (fingers crossed)- hopefully my story can help someone else who lurks on the internet like a creeper. <----me.