To those who have been referred to a neurologist

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trayne91

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10/2013
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Wisconsin
In my last post, I stated my GP has referred me to a neurologist due to muscle spams, twitches, my thumb moving on its own, and other symptoms. I haven't seen a neurologist before. This will be my first time. I am diagnosed with fibro from my GP and my rheumy.

As a person with fibro going to see a neurologist for the first time to maybe find some more answers, can anyone who has already been down this road tell me what they do on your visit. Is there anything I should be prepared for? What are good questions to ask the neurologist? I would like to be as prepared as possible. Thank you.
 
I've twitched for 17 years, and I remember being referred to a neurologist. They do a clinical exam (which is simple). They will ask you to squeeze their hands to check your grip, ask you to push their arm away, then pull it forward, they'll use the little hammer to check your reflexes in your knee, and scrape the bottom of your foot looking for a reflex. Mine also had me walk across the office on my toes, and then on my heels. They'll check you eyes, and do a few simple coordination tests. IF anything looks questionable, they might perform an EMG (but only if they feel it's a necessity). The whole thing is usually over in about 30-40 minutes tops (without EMG). God be with you, and please keep us posted! Hugs!
 
Thanks NytViolet. I actually did all those things in the GP office before she referred me over. I wonder now if she noticed something, but didn't say anything, most likely so a neurologist could diagnosed me? Hmmm.... I will keep posted. I have awhile before my appointment, but getting ready now. I got put on the cancellation list so I'm hoping for something sooner. My hand is really started to hurt now from the repetitive pulling of my thumb inward to my palm. It's been going on 8 days today and it's finally getting pretty sore now. Ugh.
 
Well, I've been to many neurologists in my life. I must say that the experience and what you can expect varies a lot depending on the neurologist, because some are quite good, while others is more than obvious they are in mostly for the money. A good neurologist will ask you a lot questions, he will also perform a neurological exam to check your reflexes and your sight. Then if he notices something odd he might give you a referral to get several tests done.
 
My neurologist had me walk across the room, tested my reflexes, broke a "q-tip" in half, and took the broken end of one and tapped certain areas on my face, arm, hand, thigh, calf, and feet on one side, and repeateel on my other side with the other and asked each time, "Do you feel that? Yes? Describe the feeling. No? Ok.". All doctors are different in how they ascess a. patient their first visit.
As to what to ask first, I am unsure because I was sent to my neurologist for a whole different problem, and my neurologist diagnosed me with the fibromyalgia.
 
I saw a neurologist recently, I was referred prior to my diagnosis and my go/rheumatologist figured it out in the meantime. He asked a lot of questions about my symptoms and family history, then did a quick exam to test my muscle strength, coordination and reflexes. He also had me go back for an emg just to be sure this wasn't an early stage of something like ms. All was normal (although the emg was less than pleasant) and I'm going for a follow up in a few months.
 
Thank you for sharing all the great info!
 
You never know...you could have myofascial syndrome, Lyme, or even vitamin deficiencies that are undetected. Every fibro patient should also be worked up for thyroid issues. If you do a lot of online research, you'll find many stories of people told they have fibro, when it was something more treatable. I know its time consuming, expensive and the last thing you want to do with your precious free time is visit doctors, but sometimes you have to be your own advocate. Sure, maybe its fibro, but what if you also have hypothyroid, vitamin D deficiency and disk problems? You might get huge relief with the right treatment. The problem is how our medical system works. Ideally, all tests should be done under one roof, and all specialists should compare notes and formulate a plan...sadly that rarely happens. We are forced to beg for copies of our test results, then schlep from one office to another in a state of exhaustion, only to get 10-15" with the doctor. Throw in a few snippy receptionists, nasty nurses and hefty co-pays and it can be daunting. WE NEED FIBRO CLINICS!
 
Yes, fibro clinics would be great! My thyroid has been checked completely and all that is ok. My vitamin D was 17 back in 2011 or 2012. I take 1000 IU D3 a day and I'm in normal range for vitamin D now. I supplement with a daily multi, magnesium, B complex... disk problems I probably have, but have never been checked for... yet. My lower back was hurting since I was 16 working at Dairy Queen. I couldn't stand for that long with bending forward and punching myself in my lower back to help relieve the pain and I was only 100lbs through my 20s, so something was going on there. Hopefully, we keep working at things and find something else out. My GP is all for it and is who is sending me on to the neurologist next. She listens and it was even my own research and advice that she even checked me for Celiac back in 2012, which came back positive. Getting online is all I do. Right now I'm a bit stumped at what could be going on, but still researching.
 
I'm in the same boat. I have horrible pain between shoulder blades, a weak-feeling arm and leg, and often the bottoms of my feet burn like I'm on hot coals. The PA sent me for an X-ray and I go in Wednesday 7/2 for her to review it with me. I feel shaky and exhausted which results in awful anxiety too. They did a blood panel which showed folate/iron as low, but that's ok now. I'm almost 50 and no one has bothered to order a full TSH / FSH Panel! I'd have better luck seeing a witch doctor. Maybe one day we'll see a real Fibro clinic :)
 
One day... My GP always checks my thyroid, but at my last appointment I asked her to order more detailed drill down and she did it. No answer for me there. Good luck at your appt. I am playing the waiting game until 8/19 when I get in to see the neurologist. Ugh.
 
My X-ray report showed disc degeneration and significant bone spur which seems to be encroaching on my nerve at C4-5 I think. My entire cervical spine was a mess, but I'm also dealing with horrid fatigue, burning feet, twitching (I've had them 17 yrs), neurogenic bladder, sexual dysfunction and I won't even see the orthopedic doc until 7/25. On the bright side, it doesn't seem to be progressing. I just feel so low right now. I've lost faith in doctors and pray that I'll eventually find one who is an advocate. I've been diagnosed with CFS EBV and Fibro in the past -- this feels like the worst flare ever, and now I have to see an ortho. I'm almost 50 with palpable nodules on my thyroid and only 3-4 menstrual cycles per year, and NO ONE has even bothered to test thyroid or sex hormones! That's why I said a Fibro clinic would be a dream come true. When you're in pain, and exhausted, the last thing you want is the run-around. Sorry for venting; just feel hopeless today :(
 
I'm in the same boat. I have horrible pain between shoulder blades, a weak-feeling arm and leg, and often the bottoms of my feet burn like I'm on hot coals. The PA sent me for an X-ray and I go in Wednesday 7/2 for her to review it with me. I feel shaky and exhausted which results in awful anxiety too. They did a blood panel which showed folate/iron as low, but that's ok now. I'm almost 50 and no one has bothered to order a full TSH / FSH Panel! I'd have better luck seeing a witch doctor. Maybe one day we'll see a real Fibro clinic :)

Sorry to sound nosy, but that pain in between your shoulder blades... have you been having it for very long time? or it's kinda recent? Let's say 3 or 4 years? I ask because I have the same issue and it turned out to be a hiatus hernia, it's very hard to tell the difference between a back pain caused by a hiatus hernia and an ''average'' back pain.

Last 2 years I had been thinking it was my back, but not in fact was the hernia. I wasn't new to back pain, but despite that I was unable to tell the difference. So if you can I'd get a endoscopy done.

Btw, I'm not new to pain in that area, but the hernia just made things way worse.
 
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You never know...you could have myofascial syndrome, Lyme, or even vitamin deficiencies that are undetected. Every fibro patient should also be worked up for thyroid issues. If you do a lot of online research, you'll find many stories of people told they have fibro, when it was something more treatable. I know its time consuming, expensive and the last thing you want to do with your precious free time is visit doctors, but sometimes you have to be your own advocate. Sure, maybe its fibro, but what if you also have hypothyroid, vitamin D deficiency and disk problems? You might get huge relief with the right treatment. The problem is how our medical system works. Ideally, all tests should be done under one roof, and all specialists should compare notes and formulate a plan...sadly that rarely happens. We are forced to beg for copies of our test results, then schlep from one office to another in a state of exhaustion, only to get 10-15" with the doctor. Throw in a few snippy receptionists, nasty nurses and hefty co-pays and it can be daunting. WE NEED FIBRO CLINICS!
To have a clinic just for fibro would be sweet. Hopefully that will happen some day.
 
Sorry I'm just getting back to you. I've had the pain between the shoulder blades for a few years now. I go to roll over in the morning, and it is excruciating. It feels like someone has stitched all the muscles between my shoulder blades together, and it's often brought me to tears. It's funny you mention an "endoscopy" because my doctor is sending me for blood work in August called "Endo routine". So maybe she's thinking along the same lines. I meet the orthopedic doctor for the first time this Friday 7/25/14, and he will review my x-rays and decide what steps to take from there. Although my symptoms are not progressing, the daily pain is difficult to smile through. I am a Social Media Admin for a large corporation, and spend 8-9 hours daily working on a computer. My left arm is aching like crazy by about halfway through the day, and I still have the burning and pain in my feet (probably explained by the messed up cervical spine). I will look into hiatal hernia though. What treatment was prescribed for your hernia? Also, how are you doing now? -Nyt
 
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