Just back from Neurologist

[bbeanlphie]

Hi guys after 3 weeks of intense anxiety and reading forums I went to my general doc then asked for a recommendation for a neurologist which I just got back from a few hours ago and would just like your opinions.

3 weeks ago felt my left hand pointing finger twitching and when it didn't go away for a day I held it down and saw a twitch in between the pointing finger and thumb. a few days after this for a good 5 minutes my right thigh was twitching where you can see the thigh jumping at close inspections. This never came back. A few days after this my left elbow had twitching together with my forefinger area and this lasted for a good 10 days or so and would come and go in spurts in maybe a quick twitch to a few minutes then go away and come back a few minutes or hours later. I have now felt it in my left thigh come and go and get a slight tingling sensations in my legs.

The twitches in left elbow and forefinger have not been felt for about 3 days now, but the lower extremeties such as calves, foot, thigh get a tingly sensation here and there and twitching has gotten less.

My general doctor ordered blood tests for mercury, thryoid, b12 and folate.

The neurologist today did a physical exam having me walk in my boxers only and I guess looking if I have a slanted posture and did a physical exam with squeezing and reflex tests on arms and legs.

I had told him the anxiety of reading about ALS has stressed me out beyond belief and has made the twitching worse possibly and I started going to the gym 2 months ago lifting heavy weights.

No family history of neurological diseases and no caffeine or drug use. I had requested a EMG and NCV, but he advised me that we will not find anything and this will go away and told me he is sure I do not have ALS or any serious neurological disorders and wanted to prescribe me anti-anxiety pills which I declined so no EMG or NCV were done. He also advised me from the cases he has seen ALS is almost always weakness first.

He also ordered a CPK blood test to test for muscle disorders and if in 2 weeks if gets worse he will then do the EMG and NCV.

In the end he said the heavy lifting in the gym and intense anxiety made it worse and to come back in 2 weeks.

From the symptoms I described does it sound like ALS to you guys?

[Al]

I'd go with what the doc said. Quit the heavy lifting ( which can cause twitching) for a few weeks. Do light lifts with medium reps and see if it affects things.
AL.

[bbeanlphie]

Thanks for the reply. I have quit going to the gym altogether for about 10 days since the anxiety and googling my symptoms has held me in front of my computer. It also doesn't help I work with computers all day and the google search bar is on the top right.

Hopefully it goes away.

[Al]

Do you mean the google bar or the twitching?
Al

[bbeanlphie]

The google bar I meant. It has kept me on a endless search for answers and I always find the more serious diseases to focus on

[bbeanlphie]

Does bodywide twitching usually resemble ALS symptoms?

[bbeanlphie]

Im experiencing now more quick twitches at random places on my legs and arms mostly now where as before it would be surges of a few seconds to a few minutes. The ones I feel now for the last few days have just been like little electrical shocks at randoms places sort of like a tiny twitch under the skin.

Has anyone else experienced these sort of tiny twitches.

[Al]

I was kidding about the google bar. Being new you haven't learned about my dry sense of humor. Mine started in the calf and stayed in that area for a month or 2 then started in other calf. That's what makes me think yours is related to BFS or something else.
AL.

[bbeanlphie]

ok now I know. :)

I think the reason twitching symptoms cause the most anxiety is due to the type of symptom it is. Most people know to look out for chest pain, nausea, etc, but involuntary twitching is not something people discuss with others and is not brought up by most people that I know of.

Hopefully it subsides.

Has anyone else experienced problems similar to mine?

[DMHltd]

My symptoms are pretty close to yours and the Neurologist pretty much said and did the same things, except no blood test. He didn't want to do an NCV or EMG based on a normal physical exam. I think if you read a lot of posts you'll see many that have symptoms like ours. They may not match exactly or in the same order, but you'll recognize them. If you click on the blue DMHltd you'll see my other posts. I'm kind of waiting to see if I develop any "real" weakness before I get all worked up again. It's amazing to me how many people have all these symptoms that basically don't have any diagnosis other than BFS or maybe lime disease. There seems to be a lot of twitching going on.

[geehdee]

I had weakness, drop foot, falling and some paralysis all before I started twitching.
Anxicety can make twitching more noticable. Continue to regard your symptoms but don't let the twitches OR the information you are googling obsess you. If you end up having ALS, there will be plenty of time to be scared and anxious... and if you don't have ALS, you have wasted time worrying . In other words, try to enjoy this very moment, because that's all any of us can be sure of anyway. Best wishes for a good outcome.

[bbeanlphie]

thanks for the replies guys.

Just another note the Doc also noted that since I am 28 years old it is extremely rare which is another reason he went against testing me with an EMG and NCV.

How rare is it exactly for people under 50?

[bbeanlphie]

One thing that confuses me is the onset of symptoms I have read at most forums that if twitching is to come first it is usually in one area and slowly spreads to different areas and if bodywide twitching is felt initially then it almost isn't ALS

[Bobby C]

Before being diagnosed with PMA, I saw four neurologists. Each one looked at my tongue. Now that I make scheduled visis to the ALS Clinic, I am examained by a breathing specialist, occupational and physical therapists and when I see the neuromucular specialist, she checks for reflexes, strength in arms, legs and hands, and checks my tongue. Since she is a professor at a major university health science center, she may well be interested in a PMA case, how it progresses, and if it will eventually profress in to ALS. I do have body twitchiing, upper and lower. This was first noted by the first neurologist I saw.

[bbeanlphie]

What is PMA if I may ask?

[CindyM]

If you end up having ALS, there will be plenty of time to be scared and anxious... and if you don't have ALS, you have wasted time worrying . In other words, try to enjoy this very moment, because that's all any of us can be sure of anyway.

I think this is the best advice for any of us- DX'd or not!

[bbeanlphie]

I agree with that notion. Its just very hard to follow that for certain people. I guess for me I worry to much. I appreciate the advice you guys are giving.

My big twitches have become very rare where maybe once a day I will feel it on my thighs or left elbow.

My main concern now is these tingling little tiny electrical shocks I am feeling kind of like a bug crawling on you that come up very often now all over my body such as calves, thighs, feet, arms, stomach, but no that many noticeable twitches.

I will be checking today with my General Doc today for my blood test and will post the results.

[Bobby C]

PMA is progressive muscular atrophy. It is not thought to progress as fast as ALS, but there is a chance that it will progress into ALS. A Google search gives a lot of information on this type of motor neuron disease. There is also a PMA suppoort group link at the top of this ALS home page.

[bbeanlphie]

Ok so I went in today and the Doc really told me I do not have a MND and the emg will be - for any MND's . I persisted and after a 5 minutes of going back and forth he got a little upset and said he knows what he is doing. I told him I am in no way questioning his skills in his trade, but I just want it to reaffirm for myself. He said ok then lets stop wasting time and I will do the EMG. I guess he took it as an insult.

He did a dictation last week, but for some reason could not locate my file but told me he remembered my case very clearly. I told him its spread to my legs and I feel like bugs crawling on it and the twitches come and go. Please note I did not remind him that it was a majority in my left hand and left elbow. I told him that I have been getting it in my legs and thighs.

We did the EMG and it was done on my legs, feet, calves, and lower back. I was not sure if he was suppose to do my arms and hand as I didn't want to sound like I was insulting him. Everything came out fine except for a slight pinched nerve in my lower back.

The test was pretty painful for a 1st timer.

All my blood test came back fine except for mercury as I need to go back and retest that. Folic, b12, thryroid, cpk all normal.

Question is this-

1-If the majority of the twitching is in my left elbow was the EMG he did sufficient to pick up any problems even though they were done on the lower extremeties. I do get twitches there but a majority are on the left hand and elbow?

2- Should I go back and request a hand and elbow EMG?

[DMHltd]

I have the feeling of things crawling on my skin too. I describe it as if someone was taking a single strand of hair and drawing it across my nose or lip or cheek or somewhere. I also get single needle pricks in different parts of my body. I usually rub them and they seem to go away. I wonder if that is what you describe as electrical shocks. My neuro didn't want to do an EMG because the physical exam was normal. I'm going to watch your posts closely because it seems we share some symptoms, I have twitches in thighs, calfs, instep, and arms. I feel a little weakness in my left arm and legs but the neuro couldn't see it. you can see my original post if you want by clicking on the blue DMHltd. I'm just waiting to see if that gets worse. Hope things work out well for you (and me :-D)

[bbeanlphie]

Hey it sounds like more bfs than ALS from all the symptoms. He told me that he sees my kind of symptoms alot and he is sure I don't have ALS.

Do you have any hot spots? My left elbow has been the most annoying as its very constant I would say maybe 3-4 hours worth of twitching in 1 day.

[DMHltd]

My left instep twitches the most. Some times it twitches and seems to hold in the twitched position for minutes at a time. I guess maybe thats a cramp, but it doesn't really hurt. What made me originally go to the GP was one on the lower right thigh a little above and to the left of my knee cap. That one was doing about 2 or three twitches a second all evening and restarted the next day. I haven't had that one since. The ones in the calfs are single fires. I don't really have any that last all day in the same place. The ones on my hands actually move the index finger or ring finger. The neuro says ALS fascics don't move the joint. I don't know if PALS agree with that though. I also get single shot pains in the calfs occasionally. There seems to be some disagreement between PALS and the medical community weather there's pain with ALS.

[bbeanlphie]

From visiting both forums I always end up with a fearful ominous feeling after coming here and reading all the stories. The aboutbfs site brings me back some sanity.
In the end I guess we should trust out Neurologist.

[GodIsGood]

Hey there- I too have experienced the SAME Thing w/ Twitching. I am a 28 year old female! I havent had the finger twitching but I have had it every where else- I've done this before about a year and half ago and never had it again til last week. (I was also on LEXAPRO BOTH TIMES). I am pregnant therefore a EMG canNOT be done. However I spoke w/ my OBGYN today and he knew a lot about ALS. I told him how I felt ..the anxiety etc. He first TOLD me as your NEURO did MY AGE plays a BIG THING- its just NOT COMMON, VERY RARE. ALSO..he stressed to me how ANXIETY plays a HUGE ROLE.....And i notice when im out and about having fun such as today..(finding out my babys SEX *its a girl :mrgreen:* ) I hardly hand any twitches- but I got home and started studying the net again and TWITCHES and BOOM they came BACK! but not near as bad. My OB put me on Prozac and begged of me to go to a psychiatrist. He said my obsession with this is very unhealthy...and only makes it worse.
Soooooo- I was just gonna tell you...I might would try the ANTI ANXIETY pills. I can tell today by ONE PILL I am better. I am sooo relaxed. A lot of PEOPLE experience twitching- and its benign..Unfortunately there is ALS, BUT..my thing is...and as someone said in previous threads..take your doctors word.. *Neuro's are pretty smart*. and enjoy the moment.Anyhoo also LIMIT yourself to this stuff and dont endless search for symptoms. TWITCHING is ONE SYMPTOM Of ALS.
I am soo thankful for the people on this site and their thoughts and concerns. They are Great! ESPECIALLY AL! :)
Take Care, DeeDee

[Al]

So DeeDee if I'm great, are you naming the baby Alana?
LOL
AL.

[pmbenb83]

DMHltd - You sounded like you were wondering if your twitching in one spot for a long time was a cramp... from what my husband experiences, a cramp is more like a charlie horse and makes him jump out of bed from a deep sleep or out of a chair totally unexpectedly. I'm not sure if yours is a cramp or not... definitely sounds like fascics though. Hopefully, you just have BFS. :)

DeeDee - I think Al might be on to something... Alana is a beautiful name! LOL Congratulations on your little princess! ;)

Take care.
Pam B in Va

[GodIsGood]

Would you be mad dear if I said that was a PRETTY NAME :mrgreen: LOL! It is tho!!!
Thank you so much for your uplifting words ya gave me the other day and optimism. I had enough confidence to bring it up today to my doc!!! :mrgreen: Drink some wine for me, would ya!!!!!

[Al]

Actually we had company for dinner and did have wine. I have a niece named Alana so I won't be upset if you choose something else. Glad I could help you over some of the hurdles of life DeeDee. Take care.
AL.

[GodIsGood]

Thanks hon! I started the Prozac last night...and I didnt twitch all night and I havent this morning- I guess I learned my lesson on just starting and stopping a medication w/out docs supervision- it would have answered a lot of my questions and worries from the get go!!!!!
Glad you had a good dinner- I dont know what it feels like to keep food down!! Prengnacy reeks havoc sometimes!!!!! :mrgreen:

[Blizna]

Look, I had and I still have the same symptoms as you.

I have twitching for more than 7 months - no weakness, no atrophy..only my joints are cracking but thats probably due to many and hard excercise I did to prove myself Im strong.

AFAIK if ALS, in very very very rare cases starts with twitches, those are constant and in one place...and if they are bodywide spread as a first symptom (which is almost impossible), weakness would follow very, very early. In a weeks or a few months.

I have the same as you - random twitches everywhere. I have also feeling of "quick tired" muscles but this condition is still the same and its common amng people with BFS (benign fasciculation syndome).

[olly]

pma/progressive muscular atrophy. i have pls/primary lateral sclerosis.
i get constant random twitchings but no atrophy. twitching and fatigue are vague symptoms common with lots of every day illnesses. if your neuro checked reflexes and ok,no neuro weakness,or other neuro signs then im sure its not a mnd.

[Blizna]

Hey, I dont think its PLS...

He has twitches so without nothing else its BFS.

PS: I have exactly the same feeling of electric shocks when I get twitches. And its more than 7 months now...no weaknes or atrophy, just excercise intolerance

[jl73]

you can look it up online.
try to eat foods high in it, and avoid sugar.
Most people don't get enough.