Sorry but I have a question

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help1127

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I have been dealing with muscles twitches for over 3 years now. Have seen 4 neurologists, now sticking with my Dr at USF who wants to see me every 3 months. EMG's performed by nuromuscular specialist in ALS showed no evidence of MND and was told it was good. 3+ reflexes continue the same with no other clinical issues.

I have had 2 other EMG's by 2 other non nuromuscular neurologists that found issues with nerves from my back. I do have a compressed fracture and mild stenosis of L5-L6 plus other bulging and herniated disks in the cervical area.

Been going thru bouts of shortness of breath where I feel that I can't catch a full breath. Also alot if yawning but can't complete the yawn as I can't catch all thelse air at times. Seen a pulmonologist my PFT is good FVC is at 100%. Sleep test showed moderate obstructive sleep apnea and I'm scheduled to test how I do with the CPAP.

My neuro doesn't think it's ALS or neurological related. I do suffer from anxiety and depression. But never had the shortness of breath.

I'm just tired of the continuing issues that keep popping up. Lack of energy, fatigue, tired, sleepy, twitching all over, neck pain, lower back pain, shortness of breath. Any advice would be helpful, and I know you are helping by answering and that you have been diagnosed. So thank you.

Stephen,
 
Help, it's been 3 years and 34 posts and you still don't have ALS. I'm sorry that you are having so many problems, but they aren't ALS, so this is the wrong place for you. I wish you luck, but aside from dealing with your stress and consulting your physician, we really can't offer any help.
 
A specialist told you no.
4 neuros told you no.
You have a clean emg.

Twitching is too common to be diagnostic.
Pain is not usually a symptom (common to be secondary to cramping).

Sounds like you failed to read the sticky titled PLEASE READ BEFORE POSTING, lad.

Leave this site and quit Googling ALS.

Get your health anxiety treated and I expect your life will improve.
 
Nuts, I appreciate your position. Imy going thru a battery of tests and have been dealing with my anxiety and depression with medication, meditation plus everything else they tell me to do. It's just hard as this all started when the twitching started.

Thanks
Stephen
 
I'm trying Greg but it's hard when they are not sure or can't get a definite answer, and now the breathing has me really confused.
 
It sounds nothing like ALS, tho. Lucky you!

There's nothing more we can do, and reading this site is not good for you.

Leave. 8^|

EDIT:

Help, I didn't realize you were one of our chronic posters.

Do you realize that some of us can barely use a computer? That we have to type with one finger, use voice recognition or even eye blink software?

If you have any respect or empathy you'll leave this site and not come back.

This is my last response to you. You can answer by leaving without posting ever again.
 
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Greg,

I don't mean to offend anyone so please don't think those are my intentions. If someone doesn't want to answer thenot please skip. But please don't treat me as a mental patient because I have anxiety. I have had it since 17 and never have I had these symptoms. I appreciate you plus all PALS and CALS and don't want to cause any distress.

God Bless,
Stephen
 
Re: Here goes...

I tried asking a question and was banned. Then David allowed me access again. So I asked my question again only to get short replies that made me feel stupid. I thought the Do I have ALS was meant for people to ask questions and to inform on their latest symptoms and exams. I know PALS struggle to answer but I feel that if you can't answer or have an opinion in the matter then just skip the question. My question was also removed after the moderator replied. I agree with AL as you never know who will be diagnosed, so please treat us undergoing repetitive visits with our nuromuscular doctors with a little more respect. As I have to return every 3 months as per my doctor. So a question from me is valid especially when it comes to breathing. If you feel like banning me again go ahead I wish all peace. God Bless, Stephen

Mod note. Posting out of dihals forum is against the rules which is why your post was moved. It has not otherwise been edited
 
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Ok help, I will give this a shot. I am a cals. I have twitches all the time...in my legs, arms, butt, abdomen...they are normal with exertìon if you are even slightly dehydrated or overused the muscles, are fatigued, etc. I could go on but you get the point.

Breathing....here is the thing....it is allergy season in Florida, panic and anxiety can make you short of breath, overexertion causes shortness of breath.

Body aches..my hips, lower back and neck ache. My hands and feet ache. Sometimes you just have to forget about it and take a pain med.

What I am really saying here is your symptoms are general and several docs have cleared you. Please get your anxiety meds at the right dosage, eat healthy, and take a walk. You will feel much better. Peace!
 
Thanks for your reply goosebumps. Hope you are doing ok and wish you and your PALS the best.
 
Help1127 wrote: "you never know who will be diagnosed"

This is not true enough to be true. While there are exceptions, the statistics are pretty conclusive. Persons with unexplained, continuous paralysis are treated quite differently than persons with no weakness who have been cleared by several neurologists after EMG testing, because they have very different odds.

Some of the members of this forum have extensive experience with ALS and are in a much better position to provide advice than a person who has never experienced ALS.
 
Help,
I've suffered from anxiety, too. It was in my mid-30s and it was very bad. I actually developed stomach problems and dizziness. I got pain all over and migraines. Once my anxiety was treated, the other things fell into place and most of them went away completely.
There is nothing in your posts to make me think you have ALS. You are increasing your anxiety by reading the posts in this forum. Work with your doctors and trust them, please. I wish you all the best.
Kim
 
So here's an update on my condition. I went back to USF last Wednesday as I have an appointment every 3 months. Doctor said everything is the same no evidence of ALS or PLS. But they always note that I g Ave 3+ reflexes and she has a hard time getting me to relax my leg muscles when moving them. She said she thinks I am causing it by not allowing myse to completely relax. I do have a bulging disk and 2 herniated disks in my cervical area, a compressed fracture and stenosis in my lower back. So I mainly feel twitching, burning, tingling feeling in my legs, sometimes some weakness but all my EMG's have been ckean. So I am just overwhelmed with doctors not being able to give me an actual solid diagnosis. Plus now I have sleap apnea and shortness of breath. It's just to much going on for a 40 year old.

Now my doctor wants another MRI of my cervical and lumbar. More money as these BS insurance plans never cover everything 100%. Just tired of it all sorry for venting on an ALS forum as all of you have a lot more going on right now.

Thanks for reading!
Stephen
 
Stephen, Are you seeing doctor katzin or vu? I would look at the back issues, which you have a lot of, for answers. Those types of things must be considered and ruled out. I dont think you have als but I do think your back issues need to be addressed.

Sleep apnea is not uncommon if you have ever gained or lost weight, didnt have braces/palette expander as a kid. It is nothing to stress over.I would recommend you treat the sleep apnea, get anxiety help, get your mris and then see where you are at. Posting here repeatedly is going to make people upset when you dont have als.

Most pals and cals are exhausted and it is difficult to type for pals. They are using precious resources to respond to you. Since you do not have als please do not post until you have something new to report.

Btw, als clinic is not on Wednesday!
 
Stephen,

I really care about your well being and getting the help you deserve. The things you have are treatable and, in time, your stress will diminish.....but only if you stop reading posts on this forum. I would stay off all health forums and let your doctor check out your spine, treat your apnea, put you on a weight reduction plan, and help you deal with the anxiety all this has caused you.\

I wish you all the best.
 
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