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Jacob

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Hi there. I'm Jacob. I don't really know where to begin with this story, but I'll start with my family. My father has MS, and he's almost on his twentieth year and he's helping me get through all these crazy symptoms and keeping me calm. He's very positive for the condition he is in!

Some of these symptoms may be related, some of them may not. I'm not sure yet, and yes I realize the people reading this are not doctors, but I figured I'd get some help here.

I'm 20 years old, almost 21 in a month!

So about 3-5 months ago, I ended up feeling a burning sensation in both of my legs. I thought that was very strange but I let it go. After a couple of weeks it actually reappeared and became more and more frequent, everyday actually. I went to the neurologist and got some bloodwork and everything seemed fine (what he checked I am not sure, but I know it was a lot) and ended up having to get a nerve conduction test, alongside an MRI of my brain, and that came up clear also. At the time I wasn't doing much, just mostly sitting at my computer, and I didn't have a job, or my diploma. While I would sit at my computer I would feel like on the left foot, inbetween the second and third toe, it felt like there was a small spasm occuring there and it would spasm every 30-60 minutes. Shrugging it off as bad nerves, I continued my regular routine. Afterwards I ended up getting a lot of shooting pains in my legs, never at the same time but both of them. Finally I decided I wanted to get my life together because I have a girlfriend I love very much and want to be able to move out and support her, so I moved in with my grandmother to get on track, so I can be where I'm suppose to be at 20 years old instead of lagging behind. The burning in my legs still persisted and a lot of times it was bilateral and once in a while it was on one side. One night I was laying down and my muscle in my arm started spasming, and I really thought that was weird. It then began to happen in my legs too! Both of them, every 30-120 seconds something else would spasm, even parts of my tongue! Once again I thought that was very strange, but I slept it off. When I awoke the next morning the symptoms still continued and that's when I started to get a little worried. My grandmother ended up touching my shoulder and it jumped immediately afterwards! It was like it was really overreactive. I chalked it up to anxiety but then after a while if I would like bump my head every so slightly on the top of the shower curtain when I got in, in the morning, my head jumped back! It didn't even hurt in the slightest, but I jumped. It started happening more and more often with little things, bump my arm it would jump, and while I would fall asleep at night my legs and arms will jump and are accompanied by muscles twitching, and sometimes burning pain throughout my day on and off. The neurologist said he's pretty sure I have RLS (restless leg syndrome) and I said, Doctor, the twitching and jerking is happening in my arms and legs, tongue, and anywhere else on my body! He said something along the lines of "I know, I know! It's a very strange name for a disease that can affect a lot of you in some patients" About 2 weeks ago I got a job as a cart pusher! So now I'm like fulltime pretty much between school and work! Also cartpushing is no easy task! So far I've been doing pretty well with it, (haven't managed to nick a car yet!) and I've been doing it for about a week. I hurt very badly in my legs but that's definitely because the job is definitely physically exercising. I noticed while I'm working the twitching dissipates nearly completely. Even the leg burning has completely stopped at night, (so the exercise must be helping at least a little bit!) The shooting pains still happen, and have even moved to my hands (which put me on edge when that started happening) the twitching comes back when I wake up the next morning, but it happens when I get off of work (so far I've worked an 11 hour shift, and 3, 8 hour shifts) but it's much much more mild. Oh and I forgot to mention in the center of my left foot, it feels like it's spasming ever so slightly. It doesn't hurt but it feels almost like a very slight "breathing" vibration in that foot. It will happen most often at rest, about every 5-10 seconds. and started about 2 weeks ago. Also when I woke up the next morning after the vibrations, I got up and felt very surreal. I was experiencing depersonalization and was very dizzy and that affected me for about 4 days but then went away, but the depersonalization still comes and goes, but the dizziness has MOSTLY subsided.

Thank you guys for reading my post. I have went over the sticky at the top and I know some of these symtpoms aren't traditional. I have another neurologist appointment on the 18th of November. I'm not sure if I buy the RLS thing especially once more symptoms started happening. Thank you guys once again!
 

MaxEidswick

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>he's almost on his twentieth year and he's helping me get through all these crazy symptoms and keeping me calm. He's very positive for the condition he is in!

good for him and you!


> I have went over the sticky at the top and I know some of these symtpoms aren't traditional.

#1 - Read the STICKIES at the top of this forum. AGAIN!
#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


------
Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 

Clearwater AL

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Jacob,

First, many members here struggle to read lengthy posts. Your paragraph the size of a city block I'm sure was too difficult for some to wade through.

As you wrote,

("My father has MS, and he's almost on his twentieth year and he's helping me get through all these crazy symptoms and keeping me calm. He's very positive for the condition he is in!")

Then following,

("Finally I decided I wanted to get my life together because I have a girlfriend I love very much and want to be able to move out and support her, so I moved in with my grandmother to get on track.")

What were you thinking? If your father was helping you get through your crazy symptoms and keeping you calm why bestow all of this on your Grandmother? Was your father telling you things you didn't want to hear or listen to?

("The neurologist said he's pretty sure I have RLS (restless leg syndrome) and I said, Doctor, the twitching and jerking is happening in my arms and legs, tongue, and anywhere else on my body! He said something along the lines of "I know, I know! It's a very strange name for a disease that can affect a lot of you in some patients")

Jacob, it might be cyberchondriatichypochondria... he probably wasn't sure of the spelling at that time.

('I have another neurologist appointment on the 18th of November. I'm not sure if I buy the RLS thing especially once more symptoms started happening.")

Be sure and tell the Neurologist you aren't buying that RLS thing... be honest with him and he'll be honest with you.

Good luck.

#4
 

MaxEidswick

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Showing results for cyberchondria tic hypochondria
No results found for cyberchondriatichypochondria

>#4

:)
 

Atsugi

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Well, Jacob, please allow me to pile on with what Max and Clearwater have said: You don't have ALS. No way. Keep your doctor's appointment.

I saw no possibility of ALS in your symptoms. Very possibly stress, now that you know inside that you were "lagging behind." I know the feeling. Literally. I know that stress can do that and much more to your body. But, I'm not a doctor, so keep your appointment.

I do know ALS, however, and you don't have it, not even a little bit.
 

Clearwater AL

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Max, I hope Hippocrates of Cos will forgive me. I forgot the hyphen... cyberchondriatic-hypochondria. :)

PS. Jacob, sincerely, you have numerous symptoms that you described vey well in your original post. Just a suggestion, I would copy your large paragraph of description and let your Neuro review it at your next appointment November 18th. You've received great assurance from two very qualified members you don't have ALS. But, there may be something else going on the Neuro can help you with.
 

Jacob

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"What were you thinking? If your father was helping you get through your crazy symptoms and keeping you calm why bestow all of this on your Grandmother? Was your father telling you things you didn't want to hear or listen to?"

My father didn't actually live with me. His wife (my stepmother) works in corporate for a large restaurant chain. The only time I ever talk to him is on the phone or skype. He moves somewhere else in the country like once a year, Texas, Chicago, Arizona, Minnesota and a couple other states.

Also I'll make sure to tell my neurologist I'm not too keen on the RLS diagnosis. Thank you guys a ton. When I get my final diagnosis I will post on this thread once again to update. Whatever it is I'm not too worried life threatening or not. In all honestly, I just want an answer. Thank you guys for swift responses, and I do wish you all the best of luck on your journey with this crazy disease.
 

Clearwater AL

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Jacob, that was the best of replies. Do let the members know of your eventual diagnosis. Let's hope you learn that the wonderful life of your 20s, 30s and 40s lays before you... the 50s and 60s ain't all they're written up to be like in the AARP magazine. :)
 

Clearwater AL

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Mike, I did. The money got better but health went the other way. :)

On second thought... now the money needs some doctoring too! It needs a good shot in the arm. Those damned Lottery tickets just ain't happening. ;-)
 
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