Very Nervous

[worriedtwitcher]

I am very nervous about the symptoms I have been having over the past 6 weeks. I want to preface this that my grandfather died of ALS (diagnoesed age 85) and this is the only known case of ALS in my family. I have been to 2 doctors: 1 a general neurologist and 1 a very well known specialist in NYC (the same center that treated my grandfather). I am a 33 year old male with no other health problems.

My symptoms are widespread twitches, predominantly in my arms, some in my legs and also my hand. The one in my hand is more constant. I don't really have any cramping but I do feel that I have soreness. I am an avid gymgoer and I notice I have leg soreness after the gym which I may be hyperfocussing on due to my concerns. I have no muscle weakness or atrophy at all.

The general neurologist was very dismissive and said my fasciculations were not consistent with ALS due to them not being like worms and my awareness (feeling them). He gave me xanax (I am not a nervous person and never had any psych issues although I do have a very high stress job)

The specialist did a full examination and told me my fasciculations were benign. Although he did note hyper reflexes he said it was because I am wound up. Other than that the neuro exam was completely normal (his exam was extremely thorough (I believe it was)). However, he said an emg was a waste of time and money due to having zero symptoms other than the widespread twitching. He also told me that having one family member (opposed to 2 or more) does not significantly increase my chances of getting ALS. He told me it generally affects multiple people when it runs in families (my grandfather had 4 siblings that all died late in life of natural causes, he had 2 kids and there are 7 grandchildren; all healthy).

My question to PALS (and others on here with knowledge) is should I be concerned or am I overthinking my symptoms due to to my grandfather? I read the studies and I can't help but feeling like I am in the low percentage of people that present with fasiculations. The specialist told me that study was flawed because it was "self report" (vs. people having neuro examinations when they had the fasciculations).

Sorry for the long post

 

[trfogey]

worriedtwitcher,

Listen to your doctors. Consider backing down your workouts and give the sore muscles a chance to heal. If you can't help thinking that you are right and two neurologists (one of whom is an ALS specialist) are wrong, see a psychiatrist.

Have a nice life.

 

[kmendsley]

You are definately "overthinking my symptoms due to to my grandfather?" as you put it.

Stay away from reading studies, have a more low key workout to help with soreness at gym, and feel comfort that you had a specialist and a neuro tell you it is not ALS. If they even had a suspicion you would be getting an EMG.

Also, no weakness, or atrophy...no ALS. Check out Benign Fasciulation Syndrome for your twitches.

Good luck to you.

 

[worriedtwitcher]

I know I am overthinking it. The constant hand fascilitations are what disturb me most because of the visual presentation. Could that be a distinguishing factor from "BFS" (which I have a hard time believing truly exists and is not a way of masking a non-diagnosis).

The specialist told me the intellects (which I don't consider myself) can overthink and read too much (he assumed I fall into that category because I am an attorney I am sure).

Anyway, thank you for taking the time and energy to reply to my post. I have seen firsthand (my grandfather) how terrible (that is putting it way too mildly) this disease is.

 

[kmendsley]

It is understandable you would be worried with someone in your family. However, you can't live everyday wondering if you are going to get a terrible disease...you will drive yourself crazy.

I am sorry I don't know enough about BFS to comment one way or the other but thought if you didn't know where else to turn that might help you down another road to figure out your problems. But truly, if you 'pass' the neuro exam, and no weakness, I don't believe you have any reason to worry about ALS.

 

[Al]

I think you need a hobby. low stress like building models or something not computer related. I doubt you have ALS.

AL

 

[trfogey]

I know I am overthinking it. The constant hand fascilitations are what disturb me most because of the visual presentation. Could that be a distinguishing factor from "BFS" (which I have a hard time believing truly exists and is not a way of masking a non-diagnosis).

No, you aren't overthinking it. Statements like the ones you just made come from egotistical people who hate to admit they've made a mistake in their "research" and don't want to admit that they don't know what they're talking about. In my neck of the woods, we call folks like that hardheaded and slow on the uptake, not thinkers.

If you aren't thinking, then you can't be overthinking. And no one who was actually thinking rationally would ever think that a law license and a few hours of "research" are a substitute for many years of medical training and experience. Your profession knows that -- does the term "expert witness" ring a bell? Could you be qualified as an expert medical witness in a malpractice case today? I'll bet your doctors could.

The specialist told me the intellects (which I don't consider myself) can overthink and read too much (he assumed I fall into that category because I am an attorney I am sure).

Don't worry -- we'll vouch for your lack of intellect.

 

[TedH5]

Sorry about your Grandfather. You saw two neurologists and you think that you still have reason for concern? You also claim you are not an overthinker however you are also claiming that BFS does not exist and is just a way of masking diagnosis?

Today I gave 16 tubes of blood and 4 tubes of spinal fluid and I have agreed to do this every 4 months for no other reason then hopefully the Dr's and Scientist can identify biomarkers and learn about ALS, better ways to diagnose it and if were lucky maybe even a way to treat it. Maybe I should just stop now, who needs biomarkers when we now know twitching means you have ALS. Al, I guess we can delete any sections or threads related to educating people about BFS.

I apologize for being rude, but you have had very smart forum members not to mention 2 Neurologists, one a specialists who your Grandfather apparently trusted however you still seem eager to litigate out the known facts to something that fits the anxiety you are having.

I wish you much luck and hope you get the answers you are looking for but if I were you I would already be happy with the answers I have. Of course if any of us were you we would not have ALS.

 

[TedH5]

Sorry again for being rude, long and rough day. I am not usually grouchy. You should be jumping for joy with what your Dr's have told you.

 

[AKmom]

Thank you Ted for your willingness to help find a cure for ALS. It's not a fun way to spend your time, but it is a selfless act of courage!

 

[worriedtwitcher]

Thank you everyone for the responses. I certainly don't want to discuss BFS (certainly not my intention). I think a hobby may be good for me Al, you are right. Ted- god bless you for what you are doing.

 

[trfogey]

Thank you everyone for the responses. I certainly don't want to discuss BFS (certainly not my intention).

Why not, since it is very likely what you have?

a b o u t B F S dot c o m.

 

[worriedtwitcher]

I have read alot about bfs as well. And all of the many discussions on this site about bfs. I am going to take everyones advice on here and listen to my doctors. Thank you so much for all of your help and god bless all of you. This is really a wonderful website and extremely informative.