Very first neuro. appt. this Thursday! -- UPDATED

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Very first neuro. appt. this Thursday! -- UPDATED

Postby staceyj on September 10th, 2013, 4:22 pm

Hello.

To recap --- I started twitching with a persistent lower eyelid twitch on July 22nd. Quickly, I noticed that I was experiencing muscle twitches from head to toe, basically. Often, I can see the muscle flicking back and forth. The only other symptoms I've had are occasional tingling and buzzing and sometimes feeling like there are bugs crawling on me (like my face or tip of my nose) when there's nothing there.. Went to my internist on August 8th. He didn't seem concerned but ordered blood work to check for those usual deficiencies ( B12, magnesium, potassium, calcium) that could cause twitching along with basic and complex metabolic panels. I was told that everything came back okay. At that point, I asked for a referral to a neurologist. I made an appt. which. is finally coming up in 2 days.

What should I expect to happen at this first appt.? Are there specific questions I should be asking the doctor? Are there specific tests I should insist upon? etc. Please fill me with whatever information might be helpful heading into this appt. I want to get the most out of this visit!

I'm scared to go but also scared not to go...... IF you know what I mean.

Thank you so much!


UPDATE:

I LOVED this neurologist. She just finished her residency and boards this year. She reviewed my symptoms and listened to all I had to say. (Never gave me a "stop wasting my time" attitude) She then put down her laptop and said, "we have a lot to talk about!". At that moment, I got nervous. But, she went on to tell me that she thinks I have BFS (her words, not mine) and confided in me that she has it, too, and has had it for about 6 years. She asked me not to tell anyone but she wanted to tell me so that we could talk more about it. She was so nice and explained why she doesn't think I have ALS -- and drew it on paper for me, too. Something about the brain and the top half of the body? I forgot. She told me that she would do a whole slew of muscle strength and skin sensation tests -- not to worry. So, she did those clinical tests and explained to me why my reactions were "good". She said that she thinks doing an MRI and EMG may be a bit much in my case but then added that it's still reasonable to do them if I'd like to do that. I said I would and feel it would give me peace of mind. The EMG is scheduled for October 3rd and I have not gotten the brain MRI date yet. She reviewed the blood work that my internist had already done and she ordered a bunch of other blood tests. She also prescribed a very low dose of Gabapentin to try at bedtime. I go back in 6 weeks for a follow-up. She asked me if that was good or if I'd like to come in sooner or later than that. I think I love her. :D Still twitching but feeling better, overall.
Last edited by staceyj on September 13th, 2013, 8:01 pm, edited 2 times in total.
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Re: Very first neuro. appt. this Thursday! Questions!

Postby MarioMangler on September 10th, 2013, 4:57 pm

One thing to expect is prepare for your neuro to be very bored by you. Prepare for him to wonder why you are there in his office, and why you are talking about all these expensive tests that you shouldn't know about, and don't even need. That is generally what the first visit for BFS looks like.

Doctor: You're fine. It's benign.
Patient: Yeah but...
Doctor: Just get more sleep and watch your diet. Try to keep the stress down.
Patient: But my thenar. My EMG.
Doctor: I see this all the time. I would bet a million dollars you are going to be fine.
Patient: Should I come back in 3 months?
Doctor: No.

This is kind of an exaggeration, but not really. Just expect your neuro to be very bored by anything you say about your symptoms. And for him not to be all that interested in any further testing. That is a good thing, by the way. It might not seem like it, but a bored neuro sure beats a concerned neuro. Just trust me on that one.

For specific questions, I would ask him about symptom relief. Ask him has he ever seen anything that helps with this, or anything he has seen that works. Perhaps he might even have experienced BFS himself, it seems like a lot of doctors do.

From my experience, the best advice I can give is don't go in as a panic case. Don't go in and start telling him what tests to order and how he is going to approach this. That is a very easy way to get a neuro on your bad side. Go in with a basic understand of what BFS is and how it works, and how to deal with it, and describe it very rationally, and you are far more likely to have a good appointment with him.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Very first neuro. appt. this Thursday! Questions!

Postby RGB on September 10th, 2013, 6:30 pm

First of all, you are absolutely doing the right thing by preparing for this. You will get a short period of time with someone who really knows what they are talking about, use it wisely (not sure I did!). This is even more important if you are likely to be anxious.

Primarily leave what is right to do medically up to him (or her) because more than anything you need the most appropriate investigations. However, also think about what is important to you and may not be apparent to them e.g If you are the kind of person that will truly believe an EMG result then push for one for your peace of mind even if they don't think it is warranted.

I know exactly what 'scared but not scared means' :) No reason to believe you have anything to be scared of though. Hope it goes well.

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Very first neuro. appt. this Thursday! Questions!

Postby lcanela on September 11th, 2013, 3:50 am

MarioMangler I loved the the conversation hahahahah, really, we are all like that at certain point ( when it all starts) now I am ok, and I am not like that anymore... guys , please... do Yoga, learn to relax, our body does not like it, and this is a way to express it to you.

Regards.
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Re: Very first neuro. appt. this Thursday! Questions!

Postby lcanela on September 11th, 2013, 4:06 am

MarioMangler I loved the the conversation hahahahah, really, we are all like that at certain point ( when it all starts) now I am ok, and I am not like that anymore... guys , please... do Yoga, learn to relax, our body does not like it, and this is a way to express it to you.

Regards.
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Re: Very first neuro. appt. this Thursday! Questions!

Postby Spidermonkey on September 11th, 2013, 12:25 pm

Perfectly normal to be a bit worried - like getting any exam result, except you already know the result this time..

If it is anything like my appointment it will go like this:

1. Tell me about your symptoms and when it started etc.
2. Any weakness?
3. Any numbness?
4. Detailed clinical neuro exam - reflexes, babinski etc.
5. Neuro clearly bored and declares nothing pathological present but for belt and braces orders more specific bloodwork and EMG.
6. They say they'll be in touch when they get the results, which they already know will be fine.

Try not to tell them what you need - they know more than anyone what to look for and what to ignore. EMG in my opinion is a waste of time with clean clinical exam, which your doctor has probably done already.

7. Go to the pub and have a few beers.

all the best
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Re: Very first neuro. appt. this Thursday! Questions!

Postby staceyj on September 12th, 2013, 10:55 am

Thank you all for your responses and guidance. I was feel pretty good about this afternoon's appt. until now. The panic has set in. Will try to remain calm and trust in the doctor.
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Re: Very first neuro. appt. this Thursday! -- UPDATED

Postby Jlc on September 13th, 2013, 7:24 pm

This sounds like a great appointment and to get a neuro who is dealing with it herself is great. My neurologist offered me gabapentin as well but then decided not to give it to me as I am already slightly depressed and it is known to lower mood.

Let me know if it helps.

James
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Re: Very first neuro. appt. this Thursday! -- UPDATED

Postby Yuliasir on September 13th, 2013, 11:14 pm

good atitude means so many for each and every patient. I see she did a really good thing - wrote something for you so you can refer to that at the stage of 'doubting the doctor' which sometmes happens.

Gaba had helped me to a certain degree when I was a twitchy wreck. It also has some antianxiety properties so should be really useful. Do not worry if you become a bit wobby for the first days or week, it is transient.
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Postby shell67 on September 14th, 2013, 6:46 am

Staceyj-- your neuro sounds like mine. She told me she twitched for months when she was doing her residency. At the beginning of May, when this all started, I was alternating between twitching, tingling/numbness, and feeling burning pain in arms and legs. I also had the ants feeling. My biggest fear at the time was MS (my GP right away said no way could I have ALS because there's no numbness/tingling associated with ALS), and my neuro assured me that she was very confident I didn't have MS because of my normal exam and that a brain MRI would rule it out. Waiting for the MRI was sooo hard. My anxiety was throwing my nervous system into overdrive. Although my dr. was sure I did not have MS, I was sure I did. I read everything I could get my hands on about the disease, even went so far as to join a support group. I was nursing my six year old baby at the time, and my hormones were already a mess -- imagine throwing anxiety into the mix! I was losing my mind and almost landed in the hospital due to a nervous breakdown ( I also was not sleeping and taking care of two other boys, including a difficult 17 year old boy -- my husband travels a lot). Praise God -- the MRI was normal (as a matter of fact, my neuro said she'd never seen such a normal MRI!). The night I learned I didn't have MS most of my symptoms disappeared. Since then I still twitch and get some mild numbness in arms and legs, but I no longer go to the scary place of imagining that I'll be in a wheelchair for my son's college graduation. I figure -- if I can create all kinds of MS-like symptoms with my mind, then it follows that I should be able to create good health, right? So these days I use techniques of cognitive behavior -- I act healthy, so that my thoughts/belief system will follow. I try not to read the negative stuff anymore, I take tons of vitamins, drink lots of water, walk every day, tell people I feel great, and meditate frequently, giving thanks for all the good stuff.

Sounds like the MRI will rule out anything sinister for you, too, and you sound much more at peace than I was. I wish you luck!
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