Went to neuro today

[amyecpa]

Well......

Here it is in a nutshell. He says fasciculations are only caused by caffeine(which I don't touch) or ALS (seems like a broad statement, what about BFS). He says he doesn't think I have ALS because I look fine and my hand muscles are "juicy". We are going to repeat EMG this coming up Wednesday. He has scheduled me for the last patient of the day so that we can talk after. I asked him about going to specialist and he said that in his experience without something substantial to show (dirty EMG), I would just get treated badly.
He also said that he had NEVER seen anyone my age (34) with ALS and that he sees 30,000 patients a year and has been practicing for 15 years. He did however say that if by some remote possibility it is ALS, only time will tell us and that I need to get a grip on my anxiety. He said that most of his ALS patients don't last a year.

So....... that's how my incredibly depressing morning went.

Amye

 

[crystalkk]

Amye,

I'm sorry about your depressing morning, but your nuero is right about going to a specialist without something substancial (dirty emg, ect).
It is not that they are going to treat you badly, but they will probably blow you off... Are you taking anything for your anxiety, if you are anxious it can cause fascilations also... I don't remember your story if it was just fascilations.....
Good luck with your emg on Wednesday, hang in there and try to keep busy and keep yourself occupied with other things. I know easier said then done!

please let us know how your emg goes...

 

[amyecpa]

Crystal, thanks for the encouragement. I read some of your previous threads. How many EMG's have you had? all clean? Do you still feel it is ALS? I see you've been a member since 07. That's a long time with no diagnosed. My neuro (who is extremely blunt) says I either have ALS or anxiety and his money is on anxiety. My symptoms are "numbness''/weakness in limbs and fasics. The "numb" feeling I've been dealing with for a couple of years, but the fasics are new. No atrophy and I can't tell that I have any actual weakness, just a feeling of weakness (exercise intolerance). I had a clean EMG in Nov, this will be my second. I just don't know when I'm going to be able to put this fear to rest.
Thanks for your reply and I'll post EMG report on Wed
Amye

 

[trfogey]

Well......

Here it is in a nutshell. He says fasciculations are only caused by caffeine(which I don't touch) or ALS (seems like a broad statement, what about BFS). He says he doesn't think I have ALS because I look fine and my hand muscles are "juicy". We are going to repeat EMG this coming up Wednesday. He has scheduled me for the last patient of the day so that we can talk after. I asked him about going to specialist and he said that in his experience without something substantial to show (dirty EMG), I would just get treated badly.
He also said that he had NEVER seen anyone my age (34) with ALS and that he sees 30,000 patients a year and has been practicing for 15 years. He did however say that if by some remote possibility it is ALS, only time will tell us and that I need to get a grip on my anxiety. He said that most of his ALS patients don't last a year.

So....... that's how my incredibly depressing morning went.

Amye

If you are accurately relaying what your neuro said to you -- and I have no reason to doubt that you are -- my advice to you is run, don't walk to another neurologist. To me, this guy sounds like an arrogant crank. As you yourself pointed out, there are more than two conditions that can cause fasciculations, and I can assure you that most of the PALS here have survived more than a year (three years, in my own personal case).

That makes two very basic facts about fasciculations and ALS that your current neuro has gotten wrong, so I can't say I blame you for losing confidence in him. Time for a second opinion.

Good luck.

 

[Al]

I'd stop short of calling your guy a quack but his attitude and some of his facts stink. I'd be asking for someone else. 30,000 patients a year? That's like 100 a day. I don't think so.

AL.

 

[laurel]

Amyecpa my husband went to the same general neurologist for almost 3 years, and he had several EMG's and NCS's. The last time he went to that neuro. the neurologist now said he had carpal tunnel and referred him for surgery. Hubby had the surgery and deteriorated to the point of not being able to turn a car key with his right hand, use eating utensils, or hold a coffee cup. I was shocked when I took a good look at his forearm and hand--major muscle wasting. We paid for a private referral asap and the doctor said PMA. We got a referral to a neurologist at a neuromuscular clinic. Hubby had atrophy, loss of use of his hand, fasciculations, and foot drop by the time he was seen there and eventually diagnosed with CIDP-MADSAM (he did have a differential diagnosed. of ALS during the diagnostic process). I would say that it is time to see another neurologist. We hung in for nearly 3 years with my husband's first neurologist thinking that they all had equal skills--not so.
Laurel

 

[cajebe]

I think you should see someone else if it helps you to feel more informed. You are the person living with these symptoms. It most likely is benign but, you have the right to feel certain. Go see a specialist if you feel the need.

 

[AndyDJX]

Well......

Here it is in a nutshell. He says fasciculations are only caused by caffeine(which I don't touch) or ALS (seems like a broad statement, what about BFS).
Amye

Not sure if that doctor was trying to be funny, but the statement should have sounded more like this:

"Fasiculations are only caused by caffeine, ALS, BFS, Kennedy's Disease, Fibromyalgia, Bulbar Palsy, herniated discs, thyroid problems, anxiety, various neuropathies, CIDP, MS, Guillain Barre syndrome, numerous autoimmune conditions, low vitamin D or other important vitamins/mineral deficiencies, numerous myopathies, pesticide toxicity, etc, etc etc."

There are numerous other things that can be listed, but you get my point. There was a guy on the BFS boards who was twitching, and one of his doctors discovered that the excess calcium in his body was being stored in deposits that pressed up against part of his spine. He was treated and didn't experience any twitches after that. I'm glad that guy didn't go to a doctor who said "als or caffeine."

 

[amyecpa]

Andy,
Sometimes I think I do more research than the neuro. It is funny that you mention the calcium thing. I recently tested low magnesium, low potasium and high calcium. Not dangerous levels, but enough to investigate further. This specific combination of electrolyte imbalance is usually linked to renal problems, hyperparathyroidism, and cancer. So believe me, I'm digging further. I do have an EMG scheduled this Wed (my second) because that sneaking ALS fear just won't let go of me. It has however introduced me to some really caring people on this forum and a new awareness and MOTIVATION TO ACTION for mnd's.
Thanks,
Amye

 

[Northern Dancer]

Amy,

I sometimes feel like a vibrating tuning fork. This started years before my diagnosis. I cut out caffeine for a long time. I do drink a real coffee now and then and sometimes it does mimic my symptoms of buzzing, other times it doesn't. I think the buzzing and caffeine intake just happen to appear at the same time so I automatically blame the coffee. It is such an uncomfortable sensation that I wonder why I ever drink real coffee. Perhaps it is because sometimes there is no choice and I really want a coffee! By the way, although I am not an advocate of McDonalds their coffee is great! 86 cents a cup for us oldies.

Sometimes doctors dismiss a symptom because they have never experienced it themselves or with their patients. Some doctors ( and other people ) just cannot and will not say "I really don't know." If you meet a doctor who says that, recognise that he is special and stick with him/her.

Lorna

 

[TedH5]

Amy,

If I were you I would seek the advice of a different Doctor. You deserve to at least be informed properly and treated respectfully. Now he is most likely correct that you do not have ALS (that may be the only thing he got correct) but you should feel comfortable that you are being given all of the information you need. The PALS on here have given you a lot of great information about fasics and hopefully that will help relieve some of your anxiety and fears about ALS because fascilations is far from being a lead indicator of ALS.

Good luck on Wednesday and keep your head up and spirits high!

 

[nachiketg]

I have suffered a lot due to this and I really really don't want anyone to suffer.

Do you check the symptoms again and again?
Do you test the strength of legs/arms by doing particular actions like walking on toes, lifting things?
Do you walk very conciously feeling that you will trip?
Do you see everything that is happening to your body with great deal of sensitivity?

Your symptoms are so generalized that they cant be ALS.

You have obvious health anxiety disorder, obsession about health, especially fatal diseases.

If I tell you that your symptoms are similar to my onset of CIDP, then will you look up CIDP in google and be convinced in few hours that you have CIDP instead of ALS?

This does indicate that you need counselling and medication for your mind. Please don't worry. Take professional help.

Join some other forum, like photography, nature, blogging. There are so many good things in life.

Why keep thinking about deadly diseases and be compulsive?

Please come out of this and enjoy life. Its only once..

Take care..

 

[lydia]

I don't think it is fair to characterize Amye as having an obvious health anxiety disorder. She (?) is asking reasonable questions given the events she described. We want to be reassured by our physicians that we are ok, but then when these same doctors make statements that are clearly absurd even to the most uninformed of us, it is hard to selectively place faith in their other statements, like "you are just fine" while simultaneously ignoring the stupid ones. Everything they say becomes suspect. And once that happens, it becomes impossible to take their interpretations of your health seriously. And so you get no where on addressing your fears. I couldn't bring myself to see a doctor after that doozie of a comment.

Take care Amye,
Lydia

 

[nachiketg]

ALS is such a disease that even with most available tests, anyone cant be sure that you have it or you don't. It's poorly understood disease.

By the very very low probability of incidence itself you don't need to thinks about ALS with such symptoms as described by her.

If we think on these lines, all of us are potential ALS patients waiting for time to tell their fate.

How much time are we going to spend in anxiety and dwell on each statement of the medical professional?

If it's ALS today, it may be cancer tmw and MS day after..the attitude is of worrying and needs professional help.

Was just trying to help.

 

[nachiketg]

P.S. My heart goes out to those who are already going through ALS. Their suffering brings tear to me.

Still, I am particularly concerned about my friends here who DONT have ALS. Neither have potential symptoms. And STILL suffering an ALS patient's mental trauma, if not physical.