Help with questions for neurologist and getting some help with sx and dx

[mrswillie]

I would like some advice before attending an appointment with a neurologist. I have been having some symptoms that come and go for since Jan or Feb of 2008. It started as tingling in my left hand and fatigue. I have occasional bouts of vertigo. These symptoms started recurring in December along with  one episode of tingling in my left foot, intermittent tingling in both hands and tingling now in my left hand and arm. Heat makes the tingling and fatigue worse. I am also having some difficulty maintaining my balance on the treadmill. (I have been using a treadmill since 2004 so this is not a new activity for me.) Also, when I am quite fatigued I have trouble focusing and trouble finding and  getting out the words I want to say.  I have had an EMG that showed all was good with my arms except some minor slowing in the nerves near the elbows. I have had many blood tests including diabetes, thyroid, b 12 and all results are normal. I had an MRI w and wo contrast on the brain and spine which I have been told are negative and are fine. My primary MD says this rules out MS (I have a cousin with MS) and he thinks all is probably fine but is sending me for a neuro consult at my request. Things don't seem fine to me. Any advice as what questions to ask the Neuro and if the Neuro also thinks it is nothing serious can any of these symptoms be treated, particularly the fatigue, heat sensitivity, and balance?? I really appreciate any assitance and direction you can provide. Thank you.

[sllowe]

Hi there,

Welcome. First appts can be strange, really.  But, some things you can expect from a good thorough neuro is a complete neuro exam (there are some good links on our health pages if you want to see what one consists of) and a question and answer period between you and the Dr.

Dr. will probably ask you what has been going on, so tell him/her what you currently have happening. From there, the Dr. should ask you questions that will divulge your history.

I 2nd with what the others have offered as guidance, have copies of any test run so if the Dr. wants to complete a workup you'll already have a running start.

Best advice I can give is to just be as honest as you can, make good eye contact and answer questions best you can. Bring someone with you who can sit off in the background during the appt.

We've not me, so a big "welcome" to you and thanks for joining us!
-shell

[twopack]

There is a Health Page or two (see the upper right of any page) that will help you prepare for a neuro appointment.  

I agree that it would be a good idea to get a copy of the MRI report.  Even better, get the imaging center to put the MRI on a CD.  A good neuro will want to review it him/herself and show you what they find.  

This is a good time to start collecting copies of all labs, consults, studies, etc. for your personal records.  It's way to easy to forget dates and symptoms even within weeks of their occurrence.

One question that's always good to keep in your back pocket is, "Where do I go from here?"  I've found it helpful in keeping the physician focused on the fact that there is a real person sitting in front of them and not just an abstract problem to diagnose.  Personally, I'm more interested in what they can do to return me to function or normalcy than what label they apply to my symptoms.  (Yes, I do fully understand the relief of receiving a firm diagnosis.)

I believe there is much that can be done to relieve symptoms.  This was the only treatment available for many years.  I managed my own symptoms for years before finally accumulating enough disability to revisit the MS possibility and receive a diagnosis.  Maintaining function remains my main focus.

Heat makes all neurological deficits worse, not just MS.  If you know it's true for you, you will need to start being aware of how you can decrease your exposure and when it's worth paying the price.  

I have had excellent results with medication to treat fatigue without significant side effects.  It had been so bad I didn't feel safe driving even though I slept 8-9 hours each night and took a nap or two each day.  I am awake now and feel rested with about 7 hours a night.  I'm no ball of fire but I'm not nodding off and can think through the fog.

Balance issues can be helped by becoming more body aware, specific exercises a therapist can teach you, different footwear, a willingness to use assistive devices as needed even when you feel the fool, etc.

You have a right to symptomatic treatment and relief even if the doctors cannot yet pinpoint a diagnosis.  To be sure, you may have to strongly lead them toward that understanding.  It's not the place they are used to going.

Sorry to have gone on and on here.  It's just that I've recently come to a new crossroad in my own story and things are fresh for me.

Good luck on your journey back to being yourself, or at least your "new normal".

Mary

[jensequitur]

You've already had the tests you need to put you firmly in limbo!  

At this point you definitely need to be seen by a neurologist, so he can start tracking your symptoms. The best thing is to expect no diagnosis at this time.  Neuros are so inconsistent that it's hard to tell how your appointment will go.  

Have you seen the report from the radiologist, or are you getting it second-hand from your PCP?  It might be a good idea if you get a copy for yourself from the clinic - usually they'll give one to you if they know you've already talked about it with your doctor.

Prepare a timeline for your neuro so he can see your symptoms and how they've changed through time.  He might schedule you for a lumbar puncture.

Unfortunately there's not much that my neuro was able to give me for the problems you describe.  Heat sensitivity used to be how they diagnosed MS - now it's all MRIs and lumbar punctures.  Fatigue can be treated with uppers, but you pay for it later with more fatigue.  And balance is an issue with the brain and inner ear - it's been a recurring problem for me.