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alvio_ramom

Member
Joined
Mar 31, 2014
Messages
14
Reason
Learn about ALS
Country
US
State
TX - Texas
City
Caddo Mills
I just started the process of determining whether or not I have ALS. It has been real stressful. I have read all of the sticky's. I am just looking for some reassurance from all of you that have had a family member or yourself that has or is going through this process. I have never heard of such an issue as ALS. It is truly the worst thing I have ever heard of. AIDS, Cancer, heart issues, etc....all have some medical correction available. ALS has nothing. It has a drug that could prolong your life a couple months. WOW thanks! Anyway, I am scared.

I am 42 years old. I am married w/three children. Emma, Evelyn, and Trey. Trey is three. I know that we are not promised tomorrow. I know we have to live each day as if it was our last. I know my family will be provided for if I pass. I just hoped I would get to see my children grow up. Sometimes we don't get what we want. Babies are born w/terrible diseases or parents don't take care of their kids. Anyway, sorry for being morbid.

I know this...I am available for prayer with anyone that wants it! Just IM me and we will workout the details. It is my new mission to be available for people w/inoperable cancers, ALS, etc.

OK, I know some of ya'll are going to rag on me...but I would really just appreciate the you probably don't have ALS speech :). I have been praying about it and I have had others pray about it as well. So, I do have a Support Group and the I have THE Support Group, then I have ya'll Support Group.

About 1 1/2 months ago I started the famous twitch (that doesn't mean you have ALS). About a year ago I went on a diet from 220 to 185. I am at 174 at present...but not by choice. It is because I am not hungry and/or maybe nourishment is not going to my arm and leg muscles. Anyway, I did a Spartan Race about three months ago. It was a fifteen mile race up hills and down hills. I did not prepare for it and paid the price. I ended up in the hospital for dehydration and rhabdomyolysis. About three weeks after the race I started to feel better. I then had an ear infection and took Amox-Clav. Well, I found out I am allergic to Amox-Clav. I was in bed for several days and could not move. My stomach was messed up and had "white/thick" tongue. It was not fun.

Again, the twitch started about a month and half ago. It was just in my calf (I thought). I made an appointment w/the neurologist thinking I had fasciculations and just needed to verify that is all they were. He did not send me for an EMG. He sent me for an EEG. I go Wednesday for the results of the EEG. He also did blood test for Thyroid, Electrolytes, and something else.

This is what is tripping me out. He did the strength test and studied the twitch on my left calf. He asked me if I had any other issues. I just told him that my calf felt tight. He asked if I had any other twitches. I told him "no". Yesterday, I felt something funny on my feet. I took both my socks off and there was twitches in both feet, the other calf and the original calf and my right arm. You talk about getting attacked. I felt bombarded. Minus all of that I "feel" like I don't have a lot of energy. I "feel" like I want to stay in bed. I don't do that because I have a job and a family that I need to take care of. I also "feel" like I have "thick tongue". I feels like it takes up a lot of room in my mouth.

Any constructive criticism if welcomed. Thank you for your time and concern. Again, I am willing to assist anyone that needs anything.

Sincerely,

Al
 
God bless. Wait for the doctor to make a determination and stay off the web.
 
Thanks AfraidButNotAlone. Just scared. Are you saying, "Stay away from WebMD"? :)
 
As AfraidButNotAlone suggested... wait until you get back to your Neuro this Wednesday. Concerning 'constructive criticism'... many times that depands how you take what replies you get back. After losing that much weight then running a 15 mile up and down hill race... I'd say would have some after affects if your problem turns out to be anxiety. It is not uncommon for stress and anxiety (for some people) to lose weight. Hope your Neuro gives you good news.
 
Thanks Clearwater Al! I will report back the news. All I had done was an EEG and blood work. Most of ya'll say EMG will rule out ALS. Well heck, that is where I would have started. I am not a doctor....so, I will do whatever the doctor tells me to do. I think I am going to see a psychologist about being obsessive/compulsive.
 
Neuros won't start at EMG unless they see a need for it. It is expensive and, to some people, it can be painful or at least uncomfortable. My guess is that he didn't see any atrophy or hyperreflexia or clinical weakness os stuff that indicated the need for an EMG. As "Afraid" and Al said, wait for the doctor. And, yes, stay away from Web MD and all the other internet stuff. When someone learns what their disease is, the net can help them learn about what they have, but the internet is an absolutely terrible diagnostician. Let the pros do the diagnosing. You, stop worrying and go play with your kids. (I have grandkids 2, 4, and 6. What a great age!) Enjoy them before they turn into teenagers. LOL
 
Thanks Dusty7! Ya'll are all awesome! I don't know what ya'll are going through. Honestly, I hope I don't find out! I wish I could hear your stories (for better or for worse). The Lord be with all of you. I plan on continuing to live life. My 3 year old son has a soccer games at 6pm!
 
>My 3 year old son has a soccer games at 6pm!

:)

That is starting young. We didn't start until six years old.

Enjoy,

Max
 
Thank Max! My 9 year old daughter is playing w/a recreational team and practicing w/an academy team. She love soccer! My youngest daughter (6) plays soccer, but is more interested in playing dress-up. My 3 year old is the smallest on the team. He is more interested in tackling players than playing soccer. He is not bias.....He tackles his own players. I see Rugbi in his future!
 
I too love Soccer I ran 32 acre soccer complex for a number of years before I retired. I like the others would advise not self diagnosing. Keep us posted on the results of the EMG. I hope that it comes back clean.

Rick
 
@FSHolbrook,

That is awesome! I did not grow-up playing soccer. A local parent asked us to let my 4 year old (at the time) play....it has been non-stop from then. I coach my 3 year olds and 5 year olds team....but, I love to watch my nine year old play soccer! She has already accomplished more than I ever have.

Thank you for the encouragement. I go see the neurologist tomorrow. I am glad my wife is going w/me. Anyway, I only had the EEG done and some blood work, so I'm still in the beginning process. The crap of it is the fasciculations (not that don't mean you have ALS) have spread all over....hands, feet, legs, arms....I think even in my torso(?). Anyway, my foot and calf are killing me w/ pain.
 
Just a quick question. Again, I see the neurologist tomorrow. Is it possible for the fasciculations to spread from one leg to my whole body w/in a few weeks? Ok, I will give the results of the EEG tomorrow.

Thanks again guys!

-Al
 
Yes, fasciculations can spread but fasciculations aren't ALS. Most fasciculations are benign not ALS. You don't sound like you have clinical weakness or hyperreflexia or any of the real indications of ALS. Relax, and let your neuro do his job.
 
Thanks Dusty7!

I went to the neurologist. I don't have clinical weakness (mental weakness...yes!). The fasciculations have spread all of the place. I am losing weight pretty fast even though I am pushing myself to eat (this could be caused by anxiety, I don't know). I still have pain in my left calf....oh yeah, and my nerves are shot...literally and physically. :)

This is my question to ya'll dealing w/ALS. I understand when someone is saying the first sign is physical weakness and then someone states his/her foot dropped. Well, were there signs before that or one day, your food just dropped. What about a person that works out and can't run as much or as far and it seem he/she is losing muscle mass, but there is no "foot drop". What I am asking does it have to be a "foot drop" before a person can start having symptoms of ALS.

ie: weight loss, muscle thinning, cramps, fasciculations.

I know that some of ya'll get pissed when a person that has not been diagnosed w/ALS start asking a whole bunch of questions....but what a great resource of your time to come on the internet and make people feel better about his/her situation. A person w/ALS doesn't have to come to the "Do I have ALS" section if he/she didn't want to. So if a person does decide to come help us people feeling sorry for ourselves...I for one appreciate it.

Soooooo Thank you!

Note: I have an EMG in three weeks. That was the first they can get me in. My anxiety is peaking. I still have to keep it together to work and provide for my family. I would start taking benzos, but then I would have to wean off if I received a clean EMG. If I don't receive a clean EMG, I see some Klonopin in the future. I am trying deep breathing and praying. They both work, but it is a repetitive procedure. I would thing about it for 30-40 minutes and then have an attack. Repeat the process.

If, for some reason I have ALS, I will continue to go this section and attempt to assist people.

If I don't have ALS, I am going to stay on this website and be available.


if any of ya'll that are able to call me and discuss this situation i would love to talk for a couple minutes.

(214) 793 - 7252

Al Estrada
Dallas, Texas
[email protected]
 
I guess my previous post is being audited. I don't know if I posted something I wasn't suppose to. I don't know all of the rules.

I'll do a short recap and maybe they will post the original post.

I wanted to say thank you to all the people dealing w/ALS and take the time to come to this particular section.

Again, if the original post gets posted you can disregard this one.

I went to the neurologist. No clinical weakness. Fasciculations are all over my body. Physical pain in my foot and calf. Losing weight while trying to keep a constant weight. That is about it. Weight loss because of anxiety or am I perceiving muscle loss? I know ya'll can't answer that over the internet.

People w/ALS. When you say muscle weakness is the first sign. At the beginning before your were diagnosed, couldn't you tell something was up, or did your foot just drop? I mean couldn't a person be physically active and at onset the symptoms were small or one day your foot just dropped. I having issues w/PALS stating do you have any muscle weakness. I have presumed muscle tightness, fasciculations, and muscle loss. I can't say that my foot has dropped.

Anyway, I did not post this on my last post.

EEG - normal
electrolytes - normal
thyroid - normal

I have an EMG in a couple of weeks. I am really nervous. It is very unsettling. I am an anxious person by nature. I just want to know one way or another.

Thanks for your time and concen.

-Al
 
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