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Cahill

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Apr 5, 2010
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Learn about ALS
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US
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NJ
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Pompton Lakes
I am meeting with a neurologist on Thursday. It is my first initial visit with a neurologist. I've had symptoms for at least one year and maybe even longer. I turn 22 years old tomorrow and I am a male. Some of my symptoms are constant muscle twitching in both of my calves. When I mean constant, I mean never ending all through the day and night. The only time I dont feel them twitching is when I am unconscious. I also have a white coating on my tongue which could be related or not, I am unsure. But it has been white for quite a while and my general practitioner said it does not look all that weird to him although it does to him. I'm the patient and not the doctor for a reason though.

I don't believe I have muscle weakness in my legs. I have always been very overweight and am over 300 pounds at the moment. Walking up four flights stairs will end with a burning feeling in my legs but I do not know if that is actually a symptom or just the result of being inactive. But I am able to stand on one leg and bend down on it a bit although I do have trouble with my balance. This could also be due to my weight and not the result of a neurological disorder. I have recently felt the twitching spread to my upper arms, my face very rarely, and sometimes even my buttocks. I've heard that ALS is rare in people my age but I am worried about the potential of the diagnosis considering my fasciculations are non stop in my legs. I also suffer from tremors in my hands, when I hold my arms out very still, you can see them trembling slightly. Along with twitching in my fingers occasionally as well as my toes.

I have had bloodwork done and I do not know the specifics yet but there were not any deficiencies that I am aware of although the doctor did say some things were elevated. I was tested for thyroid problems, vitamins, potassium, etc. My blood pressure was also elevated at my general practitioner. I believe it was 144 over something. I would not be surprised if my symptoms are worsened to anxiety. I'm currently in my last semester of college on the verge of graduating and have a lot of work to complete along with other engagements that demand time. Adding the worrying about my health into the equation is not really helping.

I appreciate you guys for taking the time to read this very long post but I just felt as if this would be the best place to voice my concerns and hear the opinions of people who are much more experienced when it comes to neurological disorders and ALS. I also wish the best to those people who are suffering and hopefully advancements in medicine can be made and I wish the best for all of you. Thank you.
 
My husband does have ALS, and his fasticulations are not non stop. When he moves, they stop. The chances of ALS at such a young age is extremely rare. Just ask the doctor straight out about ALS, and remember he is a real doctor, not like Dr Giggle. We can nor type in the real name or it has to go to the moderators for approval. Lori
 
Dear Cahill,

I've learned over this past year, that the constant twitching is NOT typical with ALS. There ARE, however, lots of other conditions that the fasciculations are common in. Ask your doctor to complete the full work up for auto-immune disorders as well. Alot of your other symptoms could be explained by the challenge the extra weight causes your body- the legs being fatigued climbing stairs, lack of physical activity, blood pressure, numbness in extremities....And, FYI...stress DOES often make the fasciculations more prononounced.

I would not be stressing over ALS, but at finding out how to get your overall health in order. Best of luck to you.
Peace,
 
Well I do not know if they occur when I am moving about and walking due to the fact that I tend not to pay attention and its much easier to feel them twitching when I am steady. I feel them most when I am laying down when I am relaxed. I have no idea whether they twitch while I'm moving. When I do flex my muscles in my calves, I can still see them twitching. When my eyes are closed, I can feel them twitching and I occasionally get twitches in my eyelids.

And yes, I agree with you Melody. This has been a very eye opening experience and I definitely realize that I have taken my health for granted my entire life. Hopefully it's not too late to turn that around. I am definitely going to start taking care of myself better.

I know this may not be the best medium to ask, but does anyone else have any idea what else it could be if not ALS? Are these symptoms typical of MS. Sorry if this is the wrong place but I figured the two are somewhat related and people may have knowledge of general neurology.
 
No worries, Cahill! We've all been at this point in the journey...I can tell you, from my husband's experience (still not diagnosed with ALS, but with MND-unspecified) and all the research we've done on the twitches, I've found Fibromyalgia, Lupus, and other autoimmune disorders and believe it or not, STRESS have the twitches as a symptom as well as neurological disorders such as MS. BUT, once you get to a neurologist for an assessment, all those possibilities will be explored through an exhaustive amount of blood work, urine analysis, and other diagnostic tests...

You are still very young, so stay positive and just take it one step at a time. You can make some basic lifestyle changes once you get an All Clear from your doctor to help you develop a new, healthy lifestyle!
 
There is a condition called Benign Fasciculation Syndrome and you have it. How do I know? I'm 43 and have had the same thing for 21 years. AND they started at that same point in my life. About to graduate, get married, new home, and a new job.

You'd be better off on the website aboutBFS.com

Trust me - there are thousands of folks like you. Best wishes.
 
I just found out that my neurophils and adolase were elevated. Otherwise everything else was pretty normal. Any clues as to what this could be?
 
Hey brother, they're gonna fry you on here for asking that kind of stuff.

Since I am a nice person, you meant to type neutrophils and aldolase. Call your doctor to have the results interpreted for you. I can tell you neither one has to do with ALS.

Personally, I'd also look it up myself because I understand what I am reading. Most folks do not and don't feel bad if you don't.
 
I don't mean to come here to offend anyone, this just seems like a very good community of people who are very helpful so I figure I would give it a try. My worries are legitimate when it comes to what it could be. I've done some research and increased levels of aldolase tends to show that their is muscle damage. I'm not sure how increased they are but they are higher than normal. And when it comes to neutrophils, I am also elevated there and causes of that can be stress to the body including nervousness which seems to be a likely reason why. I am very worried as well as stressing about my future and getting tons of school work done. But can also indicate damage of tissue. Does anyone have any further knowledge that can help me out? I'm really hoping for something benign at this point but I don't know what to think.
 
Hi Cahill,

Aldolase is really an outdated enzyme testing. The Creatine Kinase is more reliable in finding muscular damage. An elevated Aldolase can be indicative of liver damage, cardiovascular damage, which with your high blood pressure I would expect an elevated Aldolase panel. Most PALS have normal enzyme panels. If you had the Creatine Kinase run and it was normal along with an elevated Aldolase would point towards a Myopathy which is not ALS. Elevated Aldolase along with elevated neutrophils could point to a connective tissue disease or yet again a cardiovascular problem. Lastly, you could be a big nervous guy that bumped into something and could cause those elevations. Point being, those are nonspecific panels and even further point away from ALS. Listen to Josh, head over to BFS forums and get your cardio system checked.

Much love and luck
Kelly
 
Thank you very much to everyone who took the time to read and post. I appreciate all your kindness and thought. More and more people keep teling me this is the wrong place for me so thank you. Best wishes to everyone out there and I will keep you guys in my prayers. Good luck.
 
Good luck today at neuro and just drop by and let us know you got the all clear I think good news is always uplifting and some of the BFSers that search these threads like to have closure on members.

Kelly Belly
 
I got a basic examination with the neurologist. Just checked my reflexes and what not. She said that I had no true symptoms of ALS and that it was nothing to be worried about. She said she 100 percent is sure that it is BFS. I have an MRI and EMG scheduled for after a graduate just to be certain. But since I have had my appointment, my stress level has gone down tremendously and so has my symptoms. If I have any advice for people, it is definitely not to jump to conclusions because it will make you nothing but a nervous wreck. Coming to these forums definitely helped to feel better and I want to thank you all for taking the time to write back to me and put my mind at ease and offer any type of input. Once again, I apologize for coming here with conclusions and fear. This is obviously not the place for me but this is a great community of people and I wish you all the best of luck.
 
thanks Cahill for reporting back and i wish you all the best with your treatment for BFS

go and enjoy life.

cheers
Peter
 
My expert diagnosis is worth at least $200. I'll send you an invoice.:lol:
 
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