2.5 Years of Anxiety, Neuro Visit

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nameyisyBoby

Well-known member
Well after 2 1/2 years of 24/7 anxiety about my twitching, I went to see a neuro today. I found him in my Aetna listing (no one referred me to him, so I had no clue how good he was). I figured it would be merely a re-assurance trip for me, but it fell short of that. He never really came out and said that I don't need to worry since I have been twitching for 2 1/2 years without weakness. Anyway, he gave me a full physical, testing strength all over, looking at my body very closely, and said that was fine. Then he did the reflex stuff and said my reflexes were hyper. (which scared me).He said it could be I just have hyper reflexes, or it could be related to disease. He did say, so far, nothing points to ALS, but I tried to get him to say that he doesn't think I have it, and he wouldn't. Just that it takes different tests, and so far nothing points exclusively to ALS. (I was thinking he would say that with no clinical weakness, and after over two years of twitching that ALS is extremely remote, but he wouldn't). He took blood for a thyroid and B12 test, then scheduled an EMG and a MRI. He said the MRI is to see why my hands get numb, and that numbness is not a sign of ALS) I really don't think this guy was a great neuro. I asked him since I am 40, would I be kinda young to get ALS, and he said "no, you're chances decrease as you get older". I thought the average age was like 55!
Anyway, I have the EMG on Tuesday. Is it possible he can screw that up? I am assuming if it's clean, that after two and a half years of twitching with no weakness and a cleam EMG, that I can put these fears to rest. (hyper reflexes and all)
Your thoughts?
Thanks and God Bless,
Nick
 
NoraFL,

In my opinion, if this doc isn't a neuromuscular specialist and he is making statements that chances of als decrease as you age, I would find a different doc. I don't mean to be rude, but many neuro's are ignorant about als and it's presentation. Your standard run of the mill neuro's probably do not see much als, and when they do, they refer you out to a neuromuscular specialist. If i was going to spend money on tests like emg's and mri's, I would (and did personally) seek out qualified neuromuscular specialist. That said, I do think that if you allow this doc to do an emg, he would probably not miss something as serious as als. Bottom line is, after 2 1/2 years of twitching w/o serious weakness or other issues, you almost assuredly do not have als, but as you know, you can never say never.

Take care and good luck,

Gary
 
Gary - what do you think about the brisk reflexes? (in the context of 2 and 1/2 years of twitching, and passing a strength exam)
Thanks,
Nick
 
nicky,

I have brisk reflexes, too. I have had them for years. Your neuro is dead wrong in saying that the chance of getting ALS DECREASES with age, in fact, the opposite is true as all the literature says.

With the statement he made right there, it would be enough to make me wonder about him.

In answer to your PM to me, no I have never seen a neuro, only my GP who graciously tests my reflexes every time I see him. My GP is a very good conservative doctor who said he would not hesitate to tell me to see a neuro if he truly thought something was wrong. Am I totally reassured by that? Sometimes, sometimes not. I, too, have health anxiety so it isn't easy to let things go once I have convinced myself of something.

I would see another neuro, but that is just what I would do. Like Gary says, try to see one that is a neuromuscular specialist.

Ginny
 
I think since I came this far, got through the strength exam, plus not experiencing any weakness in 2 1/2 years, plus scheduled for the EMG on Tuesday (4/26), I just want to get it over with, and get my life back. I do have the brisk reflexes in the back of my mind though :crying:
P.S. - this was a huge undertaking for me. I have health anxiety and am very afraid of doctor visits, so you can imagine what I was going through for the past 2 1/2 years.
Thanks,
NoraFL
 
Hey NoraFL,

I also had brisk reflexes at the knee. The nueromuscular specialist that I saw was not overly impressed. He said some people normally have brisk reflexes. He also said that if you are anxious during the exam that could cause reflexes to be brisk also.

Hope that helps to ease your worries. I know how scary this whole business can be. Looking forward to hearing about your good results next Tuesday.

Jenn
 
Brisk reflexes is a loose term. Does not mean they are pathological. Anxiety or many other factors can change reflexes on a day to day basis.

However, 2.5 yrs. without weakness should be a good answer to what you are looking for.
 
NoraFL,

I've been told by all three neuro's that I have brisk reflexes. They all blamed it on anxiety. I personally think they have always been that way. It's just the way I'm wired. At any rate, brisk reflexes are nothing to worry about.

Take care,

Gary
 
NoraFL,

After twitching for 1 month and a normal neuro exam which included brisk relflexes (doc said is was normal) my neuro said "This is not ALS"

ALS does not hide, it does not take 2 1/2 years to present itself. You do not have ALS.

Ava
 
<<After twitching for 1 month and a normal neuro exam which included brisk relflexes (doc said is was normal) my neuro said "This is not ALS"
ALS does not hide, it does not take 2 1/2 years to present itself. You do not have ALS.>>

Thanks to all for responding. After all this time, I just want to get my life back (for my little children's sake). I'm hoping the EMG comes back conclusive that nothing is wrong, but since I think I have Carpal Tunnel, now I'm concerned the EMG will show some problems, that won't be conclusive, and the worrying will continue.
NoraFL
 
First off, who is this guy.

The reflex thing is crazy, I can go to a neuro and have brisk reflexes one day and the next they barely move. I get anxious and I feel jumpy and then they get jumpy I guess. There is also a rating scale mine are 2+ on my worse day, and that rating is brisk but normal. The neuro said brisk pathological or brisk normal? If he said hyperreflxia that is more than brisk are you getting the terms confused. The leg will kick almost straight out on hyperreflexia.

In addition, if this is the first time you saw this neuro, he is not going to know whether or not your reflexes are always like this, he has to watch them over time.

Kerri
 
NoraFL,
I agree with everyone else; this neuro doesn't sound too swift. An EMG is to some degree operator dependent. If it were me I would not waste the money on someone who doesn't even know the epidemiology of the disease in question. If he doesn't know the incidence and prevalence of ALS, how can you trust him to know what is and isn't normal on an EMG. As Gary mentioned, I would seek out a qualified neuromuscular specialist. As far as brisk reflexes go, many folks with BFS have them too. Just my 2 cents.
 
NoraFL,

After 2 1/2 years of twitching, you do not have ALS. The neuro you saw seems to know less about the disease than my GP, who suggested I was pretty young at 36 to get ALS.

I too had quite brisk reflexes when I went through my neuro exam. Brisk reflexes can be normal as Ava stated.

Please, let yourself enjoy your life with your young children and be there for them. Thinking back to the state I was in last year, at the height of my anxiety, I think that was when I truly realized what a gift I had in my family, my wife and two little boys. The positive outcome is that I am a much better dad than I was before (and I thought I was pretty good before bfs).

Best wishes,
Heath
 
I have to add my sentiments here, just in case you are still angsting about this. My neuro said the same as Peg above. I have had calf twitching for 10 years non stop, but last 4 months had a real flare up of symptoms. I saw a neuro in February who said that twitching for 3 - 4 months with a normal neuro exam (not an EMG) would rule out MND, so 10 years of twitching... forget it! He said that it does not hide and does not exist as just fasciculations or cramp/fasciculations. They are looking for clinical weakness, the hallmark of the disease.

Diego4Life
 

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