My first neuro visit

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My first neuro visit

Postby speg on August 16th, 2004, 12:13 pm

Well, it's over. I was so nervous.

The doctor was very friendly and laid back. He read the notes about my history that the nurse took and he began by telling me many things can cause twitching, and the #1 reason is a lack of sleep. He went on to add things like nerve damage from a disc problem can cause it, dehydration, and he even mentioned BFS. So he knew about it!

The only scary thing he said was that he has only seen 2 cases of BFS (he is on the young side, but still) and unfortunately "many" cases of ALS! GULP! However, he quickly added that it was very unusual for a female my age and that most of his patients were older and male. I guess I should be glad he has seem many cases cause he knows what to look for!

The only other thing he said that I found frustrating was that he did not believe stress caused it . . . I know neuro's have differing opinions on this.

I did not twitch during the exam and was unable to show him one. He did a very lengthy neuro exam. I passed everything. He said I was fine. My left leg is strong. He wants me to come back in 2-3 months for a check-up, and after that I would "never have to come back and see him again." He did not feel I had ALS, and that most people show some signs of weakness by three months, but if I did not develop any weakness in five or six months, that is the nail on the coffin -- especially since I passed my neuro exam and have normal strength.

He was ready to let me go (and never mentioned an EMG initially) but I said something at the last minute about my left calf being 24/7 and he suddenly says, "You know what? I think an EMG will help you. You want one?" He does it himself and I would get immediate results. He said if something showed up only in my left leg (the one that twitches the most) and no where else, then my back (discs) is probably causing it. He said ALS shows up in every muscle. I took a brochure on EMGS/NCV and left with the option to call back and schedule one or wait out the next three months.

He also said another indication of ALS was PAIN. This sortof scared me since my calf does cramp from time to time. He did not elaborate on this, but I got the impression he meant weakness AND pain.

Other than that, he was very willing to discuss ALS with me. He told me the following:

--- ALS fasiculations are constant. They do not "come and go."
--- Twitches without weakness are not ALS. Weakness usually presents right away, and if not by three to six months, ALS is highly unlikely.
--- A clean neuro exam with no weakness is a good sign of no ALS.
--- If klonopin reduces the twitching, that is a great sign because klonopin does ZILCH on ALS twitches.
--- ALS is still rare in the general population. He felt I had a zero percent chance of having it with a clean neuro exam and no weakness at my age.
--- Many things cause twitching, and he twitches himself. He also mentioned the "med student" syndrome. I did not tell him my twitching started after I read that article, maybe I should have . . .
---He told me ALS weakness was VERY obvious. Not feeling a little shakey. He said I would be dropping things alot, falling repeatedly, etc.
---He said caffiene can cause muscles to twitch. Also electrolyte imbalances, magnesium deficiencies, etc. but did not order blood work for me. He didn't seem concerned.
---He said atrophy is also very obvious -- major difference in size.

That's all I can think of right now . . . He spent alot of time with me and it is now all a blur. He did not think I have ALS but I still left feeling a bit scared. I guess I am worried I will develop weakness or pain in the next three months or the twitching will get worse or become relentless.

However, it has gotten better of late (with the help of the klonopin) and I guess I need to keep that in mind. I am undecided about the EMG.

If this man has seen alot of ALS, I am sure he would have insisted on an EMG right away, and been frank with me. He took my fears seriously, but he kept saying I was fine and had normal strength.

Peg
Last edited by speg on October 15th, 2004, 2:25 pm, edited 1 time in total.
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Postby garym on August 16th, 2004, 12:44 pm

Peg,

Good news about the visit. You should take great comfort in the visit. One thing that jumps out at me is that he said there is a lot of pain associated with als. That goes against what all three of my neuro's said. They all said pain was not associated with als. Oh well, I guess they all have there own experiences with patients and sxs.

Anyway, great news!

Gary
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Hey Peg

Postby dont on August 16th, 2004, 12:45 pm

Are you not getting the e mails I am sending you from work? Do you feel better? I sent you a couple of e mails this morning. Respond to them to work if you are getting them. If not I will talk to you from home e mail. I have been having some issues in getting things from others at my work e mail so you may not be receiving them either.

Karen
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Postby thetwitchkid on August 16th, 2004, 1:02 pm

Peg:

Great news. I am glad you shared it with us. Your neuro' insight is very helpful.
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Postby speg on August 16th, 2004, 1:20 pm

Karen -- I am not getting any responses!

Gary -- Interesting. But I have read somewhere that pain is associated with ALS, but in the later stages. However, this did scare me cause I do get light cramping/tightness in my calf from time to time. But without weakness, I am assuming this is just BFS?

Oh, I forgot to mention my reflexes were all brisk, but symmetrical, I was nervous as hell! And he said I "could" very well have BFS, he was leaning toward the nerve damage/disc thing, I think.

Peg
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Hey Peg

Postby dont on August 16th, 2004, 1:28 pm

Peg,

I think all AOL mail both in and out going must be officially blocked from our e mail. About a week another friend who has it could no longer get my e mails and I was not getting hers. I sent you another test and if it doesn't work I will talk to you from home later. I can't check my home e mail from here so I won't be able to read them until around 6.

What I read about pain and ALS was also that it was late stages and that it was hard muscle contractions. I mentioned extremity cramps to my neuro and he seemed unconcerned so who knows.

Once again more conflicting info that gets my knickers twisted!!

Karen
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Postby amy_twitch on August 16th, 2004, 11:54 pm

"The only scary thing he said was that he has only seen 2 cases of BFS (he is on the young side, but still) and unfortunately "many" cases of ALS! GULP!"
------------------------------------------------------------------------

Re-think this: This is proof positive that our GPs know what they're doing too. Many people probably twitch as much as those of us on this board...yet they 'believe' their GPs when they tell them not to worry. It's the overly-anxious bunch here (because we're all too smart for our own good and thus we tend to over think things :wink: ) that press on and get referred to the neuro office.

The fact that this neuro has seen only a couple 'bfs' cases, means that he's not getting needless referrals. He sees a lot of ALS cases because that's the true nature of his job, right? This makes 100% sense to me (and is not scary at all)...because I, like many others here, was told that I did not need to see the neuro in the first place. I was only referred to one (okay three) to thwack some sense into my super-thick headed skull :) and give me peace of mind. I should have trusted my doctor in the first place. Unfortunately I'm one of those who doesn't trust too easily---but through this experience, I'm learning to do just that. Learning to let go of 'what-ifs' and just living your life is so important!

I wrote more to you Peg in another post under 'support group'...and I'm happy to hear all went well!

Amy
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Postby Stephanie on August 17th, 2004, 10:19 am

I'm glad your neuro visit went well. I hope you feel more relieved now. Don't worry about the next 3 months. Haven't you already been twitching for 3 months? So then your wait is over--you are fine! yeah!!!
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Postby speg on August 17th, 2004, 12:26 pm

Yes, three months down, three to go.

But why did I suddenly start twitching 24/7 in my left calf again today? Shouldn't I feel BETTER after yesterday?

I think because he said ALS twitches are constant. And my left calf CAN be constant at times . . . non-stop for days on end. But it hasn't been non-stop for three solid months. And no weakness in that leg. Should I be concerned?
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Postby garym on August 17th, 2004, 1:27 pm

Peg,

My calves have twitched constantly for over a year. So it can happen that way with BFS also. It doesn't have to mean anything terrible is wrong, although it does suck!

Take care,

Gary
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Postby speg on August 17th, 2004, 2:03 pm

Gary,

In the same spot? Mine is either a spot on the lower or a spot on the upper part of calf.

Peg
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Postby Ava on August 17th, 2004, 2:30 pm

Peg & Gary,

My calves twitch 24/7 like the popcorn feeling - electrical type twitches. There are a few different spots but in the same general area. Of all my BFS this sort of concerns me the least because this is a common site of benign twitching. I know 2 good friends that have this but not all the rest of BFS. Still, maybe, I should be more concerned... hmmm. The bottom line is that the twitch without weakness is nothing bad so all is okay.

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Postby Stephanie on August 17th, 2004, 9:58 pm

When the neuro says constant, it's more than days at a time. He means constant w/progressive weakness. He would have been able to look at your leg and see the twitches the whole time you were in his office. Don't worry about your twitches, they are like the rest of ours!
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Postby garym on August 17th, 2004, 10:16 pm

Stephanie,

Anytime that you look at my calves you can see twitching. I don't think there has been one time in over a year that that wasn't true.

Take care,

Gary
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Postby Stephanie on August 17th, 2004, 10:22 pm

But you don't have weakness that progresses -that's the main thing. You can twitch a little or a lot (my feet are constant 24/7) but if twitching is your only symptom it isn't the bad disease.
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