For those with similar ALS symptoms, I see neuro tomorrow

[AnxietyKillinMe]

Of course everyone is different and has their own symptoms and everyone wants to be independently seen by a physician but what I also know is that all of us who think we could have ALS generally share symptoms. I'm thinking I will post a follow up tomorrow after I see neuro and while it may not wipe all of your fears away it might help to know that some of the symptoms we share are benign. This of course being said with a very hopeful and positive tone that all will be deemed well by the doctor. If it's not good news then I probably won't post again because I would hate to increase someone's anxiety about their symptoms. So we will see. The appointment wasn't even supposed to be til March so I'm very lucky that if there's nothing wrong I might be able to enjoy my holidays. Only time will tell now and I am absolutely terrified of what will come of it, so much so that I barely want to go!

[Colicab85]

You're going to fine mate :) I swear.

[Josh1234]

ALS symptoms are clinical weakness, atrophied muscles, trouble speaking and swallowing, and extreme change in reflexes. Unless you have one of these, you do not have symptoms of ALS.

[SLA]

Only time will tell now and I am absolutely terrified of what will come of it, so much so that I barely want to go!

Well that doesn't make any sense...

You've convinced yourself that you do have it, and painted a bleak future for yourself. So why wouldn't you want to go and find out the answer?

By the way, when they tell you that you don't have it, you still need to get help for your mental health. Otherwise you will end up in a similar situation in the future.

[AnxietyKillinMe]

I totally agree and I'm seeking help that way as well. I'm not sure which direction to take with it if I need to see a "counselor" or an actual psychologist..not really sure of the difference beyond education requirements. And I don't want to go because I don't wanna find out anything bad. Double edge sword here.

[swajj]

Yesterday you said you were seeing the neurologist tomorrow, which is today. So did you go?

A counsellor is a psychologist.

[swajj]

And?

[AnxietyKillinMe]

Hi again. My clinical exam was fine although he just wasn't really sure what to make of my symptoms. He took a lot of time with me to listen but of course didn't tell me anything definitively. I go for an EMG in January and he ordered a slew of lab work to be done. I'm not sure if he just wasn't sure about what it could be because he was kind of just a quiet guy. Luckily for me I work in the healthcare system that he's affiliated with so when I go to work tomorrow I'm allowed to get into my own medical chart and I'll be able to read the summary of the office visit which will include his belief as to what it could be with the inclusion of differential diagnoses. He kinda pushed more towards talking about stress management but didn't think I was crazy after I said "I know this all sounds crazy" he said "it's not crazy, these are symptoms you're having and it is what it is. After the EMG I'll be able to get those results, again by being able to access my medical chart, long before I see them for a follow up in February. It calmed my fears a little bit for now I guess but it still doesn't make me feel any better physically of course. Just because someone says you're okay doesn't mean what your experiencing just stops. Only time will tell now. With a clean neuro exam though it's hard to worry about ALS considering something would show in it and the exam was more than extensive.

[Fishmanpa]

Your first post. I'm going to highlight a few things.


Where do I start? I'm a first time user of any type of forum ever. Basic details as follows: male, mid 20's, registered nurse, anxiety since as long as I can remember with the worst being health related anxiety.

The short version leading up to today: My wife left me in September which was a shock to me, I spent October in a deep depression, early November had a few episodes of SVT which I was hospitalized for and by mid November when I moved back in with my parents, all hell broke loose.

I was having episodes of SVT almost daily and during those times I felt awful (near syncope, throat tight, short of breath, pounding heart of course, and dizziness/lightheadedness). It continued for a little bit but it eventually stopped bothering me once I realized I was triggering it with my anxiety. After that though, the dizziness continued on for a while. Actually the dizziness is still sort of there but not to the extreme it was at at all.

So the second week of November I moved back in with my parents and that's when it all began. I felt as though I had a sinus infection of sorts within the first week of being here, but a weird one at that if that's even what it was. I had headaches everyday but not in the usual sinus regions and a constant pressure type feeling in my head. My ears were super full and my hearing was very muffled, it's still not all the way better but it's a far cry from what it was. Increased post nasal drip, etc. and what I can only describe as brain fog which isn't all the way better either but much better than where it started. I was forgetful and my short term memory sucked, that scared me the worst because I just didn't feel like myself but at this point my mental clarity is coming back. I would also get these weird shots of tingling with lightheadeness and the tingling would happen anywhere in my body multiple times a day, a lot of it occurred on the left side of my head and face split right down the middle to the left which only lasted a few seconds and would fade, never true numbness. Those were most of my symptoms with that and some still persist, and now let's move on to present day.

Probably the beginning of December I still had some of the aforementioned symptoms like the occasional dizziness and brain fog but now I started to have muscle twitches. At first it was just in my right calf with some in my left. Then it was both. Then it was my calves, thighs, and occasionally above my waist at random spots like my abdomen, some in my back, neck, face, tongue, eye. The twitching has died down a bit since it started which I guess? I'm going to attribute to starting to take magnesium and b12. That or it's a coincidence that it slowed during the time that I took those, idk. My muscles cramp and feel stiff as if I had been doing squats all day long and I hadn't done a thing. I remember having my girlfriend stretch out my foot one night because the arch of my foot got that bad. The cramping is now lesser but the stiffness is still there especially when I walk I can feel it in my calves mostly. When walking down stairs my legs tremble with every step. I have a more noticeable essential tremor in my hands especially my right. Now my right wrist to hand is very tight and my right hand feels very tight and not as limber as my left. My writing is becoming messy and weird things just keep happening in general.

I've had a head and neck cta which was negative, brain MRI negative, past lumbar MRI years ago that showed I don't have a disc at L5-S1 with degeneration moving upward, chest ct negative, abdomen ct negative, echo good, ekg fine outside of isolated svt, basic blood work good.

I recently saw my GP who thought the muscle stuff was electrolytes that were off but they were fine and laughed at me when I asked if it could be ALS saying "you can't think like that man, even if it was what can you do about it?" And that was it. Really comforting.

Anyway, I'm depressed now because I know deep down that I don't have long left on this earth and I won't be able to live a full long life. I know that I'm going to die soon and it will be because I have ALS. All I do all day is drive myself crazy with reading about ALS and reading stories of it. Literally that's all I do I can't get myself to do anything else. Down time at work? Reading about ALS. Not with my girlfriend? Reading about ALS. Day off? You get the point. Looking for some encouraging words to help me through my last days here on earth although I know (or at least pretty much know based on odds) that I won't be dead tomorrow, but I am convinced fully that I only have a couple years left at best. Thanks for your time and understanding.

There's nothing "physically" wrong with you as all tests and medical professionals have concluded. All the symptoms you speak of can be and are associated with anxiety and some, due to real physical situations such as a cold etc. Your EMG will be clean which leaves one thing. Anxiety. Treat your real illness and you treat the very real physical symptoms associated with it.

Positive thoughts

[AnxietyKillinMe]

I agree fishmanpa. After the appt yesterday I haven't thought one thing about having ALS or gone on any sites reading about it which I what I've been doing everyday since early December, I do feel some relief from that so maybe it will just take some time to get better on its own after I chill. I do plan on talking with someone about my anxiety. Like I said I'm just not sure if I want to talk to a counselor or a psychologist. I know they're used interchangeably but some counselors have their degrees in social working, some counselors are people who don't go through a ton of schooling it's more like a certificate type degree. This doesn't make them any less qualified of course but I just know psychologists go through a lot of schooling and medical studies are included within their curriculum which leads me to believe they'll just better understand the conditions that I'm afraid of and be able to confidently help me squash all of my fears adequately. I've seen "counselors" who were just people with opinions not real solutions and were no help, which is why I generally hate going to talk therapy. Just need someone qualified. Who knows, maybe it won't be a psychologist with a phd and it'll end up being an SW or LPC. Won't stop searching for help until I find the right person!

[emmegee]

I do feel some relief from that so maybe it will just take some time to get better on its own after I chill.

It will take your body some time to recover from what it has been through. Maybe a few months.

Often we don't see the anxiety building up (I am guilty of this) and then when symptoms arrive we feel like they must be pathological and not due to the anxiety. It's hard to convince ourselves the physical symptoms could possibly be from anxiety. I am currently fighting that battle.

You should feel some relief in that the clinical exam (which would show clinical weakness) came out fine. Your neuro is ordering the EMG to make sure and cover all the bases.

My neurologist is also a "man of few words". Doesn't elaborate much and I find that frustrating. I just try to think about how "smart" neurologists are and trust that they see patients all day every day and they know better than me what is going on. This is their specialty and they are trained to find medical issues when they are present.

Glad it went well.

[AnxietyKillinMe]

Thanks, I am too. If he had true concerns I don't feel I would've left the office without him saying something. Like I said he wasn't even going to order any tests but left it up to me for my peace of mind which also tells me he wasn't worried. After that is done and those results are back I can firmly move forward away from it although I feel like I already have to a degree. After all that I've been through physically lately if everything that I've had done is fine it should also give others hope that they too will be fine. One thing I've noticed is that there are a couple of lymph nodes under my jaw just at the top of my neck like right at that junction that a week ago were severely swollen and hard and just by chance today I was feeling my neck and they're much much smaller not normal but half of what they were. Maybe this was all set off by some very odd infectious process and not so much that all of y symptoms are in my head per se but that I exacerbated feeling like crap from worrying about it. Because some of my symptoms are getting better even though I remain anxious about it in general makes me think that something really is/was going on and that I didn't just fabricate it all, I probably am just making what could've been a mild discomforting illness worse by assuming the worst. My legs haven't felt nearly as tight/cramped/heavy as they did and the twitching in my legs and elsewhere that was nearly constant is now more just an occasional thing not totally gone yet. I think some things are getting better so I just have to wait, time will tell.

[swajj]

For goodness sake why all the angst about choosing a counsellor. Ask for a referral to a psychologist. A psychologist doesn't have medical training. A psychiatrist has medical training. You work in the healthcare field. Doing what?

[Mommyof2boys]

Did you ever get an emg? Interested because your symptoms are a lot like mine