Questions

[Ljpg]

Hello everyone I have some questions and a info about my symptoms.

I started having fasicutaltions all over my body about a month ago, three weeks after a gum infection i took amoxicillin for. Didnt pay much attention to them it at all. They have not gone away so I've started to worry about them. They have been so consistant no matter what im doing, even drugs like cloneazapam which the Dr perscibed me last week as well as a emg and Neuro appointment.

My left hand and arm shakes when i hold things in it, like my phone. Also feels like ive lost coordination in it and just seems clumsy and off. Had that issue for two weeks now accompanied with just generally not feeling strong on my feet and weak in my knees.

Shortness of breath all the time, I catch myself sighing or yawning all the time and my muscles fatigue so quick when i try to workout. Basically I can't really workout.

Three weeks ago before I had the arm issue, i just had twitches. I admited myself to the merge because i couldnt stop throwing up and for some reason had no appetite, they suspected gastritis. They did so much blood work checked for vitiman deficiencies but found no issues except extremely high bilirubin levels. Just got diagnosed with Gilbert's syndrome and sent home. They also did ct and told me I had a brain.

That throwing up and lack of appetite subsided but nothing else has and the arm shaking appeared a week later.

The twitching is so suddle and speratic. It is so hard to catch by just looking. They are usually a split second and it happens everywhere; soles of my feet, knees, thighs front and back of them, arms, face(rarley), stomach, butt, shoulder and back.

My Neuro appointment is apparently going to be a 6-8 week wait. They haven't called me yet to set an appointment.


I've looked into bfs but couldnt comment on that forum there since they aren't accepting new memebers. Also didnt find anyone really with all the same symptoms as me.



I am worried alot by this point because I have a 1 year old who turned 1 today and that I do commercial glass replacement downtown so i work at heights all day everyday.

Brief info
25 year old male
Used to go to the gym 4 times a week before this
Lost about 10 pounds in a month so far
Still working to keep food on table

Does this sound familiar to anyone?

Cheers, enjoy your weekend and sorry for the brutally lame autobiography.

Symptoms sumed up
Body wide fasciatuons (24/7 like 5 to 10 a min)
Shaky left arm, especially noticeable in fingers when i extend them fully open
Shaky legs feel week in knees
Weight loss
Goosebump feeling in arms that doesn't physically give me goosebumps? If that makes sense

 

[affected]

Wonderful post here answering everything for you

https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html

 

[Vincent]

You have 2 things working for you. 1 your age with no family history points away from ALS. 2 the fact you have to wait 6-8 weeks says the drs aren't all that worried. If they suspect anything sinister you get in much quicker. Hope that helps!
Vincent

 

[dldugan]

Be vigilant. If things get worse get to a Dr. Unfortunately it is often the staff of a Dr that makes some of the decisions. If you don’t feel comfortable with the medical treatment you are receiving I recommend you find and additional Dr to see while you are waiting for an appointment. You are ultimately responsible for your health.

 

[Ljpg]

Thanks I really do appreciate the response, I'm going mental looking for people who've had ALS and similar symptoms. I live in Canada though he marked me as "next available" so it is kinda rushed its just the line is always like this where ever you go.

Also there's pretty much only two things it can be (based on my symptoms at the moment) ALS or stress/anxiety.

Never really had stress before the twitching so that's why I'm so worried now. And if I did have stress before I couldn't see it because of all these issues I have. I never felt this stressed.

Thanks for the response again.

 

[KarenNWendyn]

I read your post and it does not suggest ALS, not at all.

Did they check for thyroid problems with your blood work? I assume your electrolytes were normal, but that should also be checked.

Please read the link that Affected sent to you. The hallmark of ALS is muscle function failure, and you have not described that. Examples of that would be things like inability to stand on your heels or toes, inability to fasten buttons or pull tabs off bottles when you could do those things before, or slurred speech that others can hear. Shaking, pain, numbness, decreased appetite and vomiting have nothing to do with ALS.

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure.

Anxiety is a consideration. So are electrolyte or thyroid abnormalities, unusually heavy exertion, or an underlying gastrointestinal problem. It’s only BFS if it persists and if no other explanation is found.

Meanwhile, keep working with your doctors. But please get ALS out of your mind because you don’t have it.

 

[Ljpg]

Thanks for the reply, my thyroid came back normal and as with all my other tests so it kinda left the er drs puzzled.

Also I wasn't trying to relate the throwing up to an mnd i know they have no connection thats just what brought me to the hospital.

My left hand and arm tremor plus the 24/7 full body twitching is the main issues. Hard to not think about it when its so consisntent. But irregrardless I will take your advice.

I appreciate you taking time out of your day to respond. Thank you so much.

Cheers,

 

[Ljpg]

Hey all hope everyone is doing alright, i have a question if you guys could shed some knowledge on ck levels that would be great.

So I got blood work done 8 days apart form each other and this was the results of ck

October 15th ck = 103

October 23rd ck =164

I just noticed this. Dr didnt obviously she is pretty much a shoe maker and is terrible at her job.

 

[Nikki J]

Pretty meaningless in regards to ALS or anything else. Minimal difference in activity, a minimal bump against something could cause it. Even random variation Your doctor did not miss anything here

 

[Ljpg]

Thanks for the prompt response,

I actually just realised she wouldn't even have noticed since it was blood work from two different drs, and I haven't seen her since the new blood work I have gotten.

Thanks for shedding some light and my last question is do you think I should bring it to the drs attention when I see them again?

 

[ShiftKicker]

Ljpg, in Canada your blood test results are kept together, no matter who orders them. There's an online record doctors access for any recent bloodwork. Your doctor would have seen them. But, by all means, ask her the next time you see her and she can explain to you why she didn't think there was an issue.

 

[Ljpg]

Hey sorry to bother you guys again, just more questions.

I've been having voice issues for about two weeks constantly now, for some weird reason I lose my voice so easy just by talking. Everyday I lose my voice by mid day and lately its been all day. Many people have commented on it, it is not severe where I sound like I screamed all night but it's enough that my family and friends noticed now. Also have a dry deep cough and very bad shortness of breath thats consitnent. Clearing my throat all the time and a tickle feeling in the back of my throat. I've also developed a lisp with words that have a th in it. I've been laughed at by my friends already for the way I've pronounced certain words with th.

I was prescribed puffers, ventalin, flovent, and antibiotics. Did All them for two weeks literally zero difference.

I'm still wiating for a neurologist appointment and I'm getting sent for a pulminary function test since I have a family history of lung cancer.

Still body wide twitches, 24/7 even on anxiety meds
inner thigh tremors and now twiching occurs in thigh when i try to squat/ lift leg up when laying down
Extreme left hand tremor thats been getting worse, especially when hot water or my hand is cold and perceived weakness
Aswell as an uncoordinated walk (lifting my feet way over the littlest things like toys)

I say percived weakness because I've showed the Dr my left arm and they didn't really say anything or do a strength test she just said that its abnormal since its not bilaterial. My bicep hand and shoulder all feel off and all start to shake when i try to plank or lift it at all.

Its also bothering me when im eating now. Feels clumsy and awkward holding forkes and My hand will shake like crazy bringing food to my face, but my grip is fine.

I've seen two drs now and they said all I can do is wait for my neurologist appoinment and go from there.

They've done so many test and they've both said that my blood work is "outstanding" besides very high bilirubin.

My questions are has anyone on here heard of hyperthyroidism being missed by the first screening of it (tsh and free t4) and does this sound like bulbar onset?

I don't drink, dont smoke, intake zero caffeine my diet is very good and we'll balanced. I've always prioritized my health but yet im still feeling this way :/

I hate to keep coming back and wasting your guys time but my drs have zero answers, the only thing they tell me is that that these are odd symptoms that are clearly visible and that something is wrong but they don't know what.

Both drs think that "it could be something neurological" I was hoping and still am that this is anxiety, but the meds prescribed only help me deal with the stress they have zero effect on my breathing shakes, tremors or twitches.

I feel like I'm in limbo right now waiting for a diagnoses with zero direction toward one.

Thanks again,

Luca

 

[KarenNWendyn]

You ask “has anyone on here heard of hyperthyroidism being missed by the first screening of it (tsh and free t4) and does this sound like bulbar onset?”

Nothing you describe sounds remotely anything like ALS. TSH is a great way to look for thyroid function abnormalities.

Hoarse voice is a common side effect of inhaler medications (“dysphonia”). It can also result from GE reflux. There are many things far more common than ALS that would cause changes in the voice.

If you friends are laughing at you for mispronouncing words, then it’s time to get new friends, unless they’re laughing with you.

Body-wide twitching is not a worry.

 

[Ljpg]

Hey Karen thanks for the response it is greatly appreciated,

I just can't seem to find anything that would cause my left arm issues, I can see it tremble as soon i go to use it. I don't exercise anymore and pretty much been resting for two whole months and its just shaking more and more. My family has noticed it now and they are starting to worry. When is wash my daughter in the bath the warm water makes my hand shake non stop. My drs cant even give me a reason as why its happening so it's getting frustrating.

My friends are good, humor has always been my best medicine, thanks for looking out though

Thanks again appreciate it.