Seeking advice

Karahvalen

New member
Joined
Oct 5, 2021
Messages
1
Reason
Learn about ALS
Diagnosis
09/2021
Country
US
State
GA
City
Augusta
Hello,
First I just want to say I appreciate for what all of you do despite the circumstances of your diagnosis. You are definitely God sent and I hope more people can find this forum and learn a great deal about ALS.

I am here today seeking advice on symptoms that I have had going on a little over two months.
My first symptoms started with heavy legs and feeling very tired.

I have had right sided weakness in my leg and arm for 2 months now. It really started suddenly and out of no where one day when I woke up one day. The more i moved around the worse it got, of course anxiety set in for the next week and i ended up having full blown panic attacks and had many trips to the ER. I went to the neurologist and he said he could see i had right side weakness as I walked down the hall (he asked me to do so) and he instantly tested for MELAS and electrolyte deficiencies. All my blood tests have came back normal. I had a brain MRI, normal. He suspected Hemiplegic migraines just based off questions he asked, but I haven’t had headaches in months. I have been back to the ER many times and they have all said my weakness is a 4/5 on my right side, and that neuro takes a while to work up and to be patient, but for now they don’t see cause for alarm.

My right side almost feels like it burns and that it is stiff, but heavy/jelly like. Its just very scary overall, and I’m sure with the way my anxiety has been going I’m making it worse, but man oh man who would not be nervous? I have in the last 2 weeks started to get weird twitches when at rest. When I lay down my leg twitches in calf and thigh, and occasionally my feet will twitch. My arm by my bicep and shoulder will also twitch, but it’s not always on the right side, but the left also.

In the last week, it seems my left side is starting to become weak as well. I keep telling myself maybe it’s because I’m laying in the bed crying all day, but it’s really because i get so tired moving around and I’m just deeply afraid of what my body is doing, especially with me being so young (20 years old).

I had an MRI of my spine yesterday and am going to the neurologist tomorrow to discuss these results. They are doing a load of tests to rule things out, before jumping to ALS. They told me to not even mention that, until we figure everything else out because it will scare you.

My EMG is November 2nd and I am counting the days down.

I guess my overall question is should I be worried? It seems to be at worst when i am trying to go to bed and when i wake up in the morning, but it also gets bad when i tense up move around a lot. I feel as though when i finally get the courage to get out of bed I pay the price later for overworking my muscles. Generally, overall, they are weak for the whole day. Am I crazy out of my mind or do I have a cause for concern?

They did many tests, and only could see the weakness and feel it when i squeezed their hands. They said everything else seems fine and not alarming… and to be patient, but it’s very hard, but I am trying to look at the positives. My mind is really racing and i just need a little support.

Thank you for reading & I hope to hear back. I won’t be offended if I get no response, because i love learning on this forum & will continue to visit despite my diagnosis.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,425
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hello there- I'm hoping you will read this: Read Before Posting

Twitching is like coughing- it can mean anything from nothing to any variety of other conditions. With regards to asking whether you should be concerned? About ALS specifically? No. You don't really report the type of symptoms that would cause a neuro to consider that. About some other condition? Possibly, but you'd have to speak with your neurologist or other care providers to help tease out what the issue might be. As you are seeing a neuro tomorrow, this is the type of thing you would need to be asking them. They have your full medical history and can examine you in person, so they would be in the best position to tell you what might be of concern.

Please take care and all the best at your appointment tomorrow.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,532
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I have no idea why or how you've jumped to ALS. Regardless, if you've been to the ER "many times" over this and are crying in bed all day, you have some combination of depression and health anxiety, possibly other issues as well, so that's the first thing I'd get help for.

Best,
Laurie
 
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