How do your neurology visits go?
 

How often are you seen?

How long does it take to get an appointment?

Do they even care if your symptoms are different?

Is is just all about adjusting the medications?

Thank you.

I see my neurologist every 3 months. I make the appt for the visit before I leave the office. It can take a few months to get an appt if you are a new patient. It can help to get an appt more quickly if your PCP is willing to call and request one. Try to get the appt yourself first

They shouldn't care if your symptoms are different. Mine just listened to everything I said the first time I went. Then he tried to figure out what may be causing my pain.

Unfortunately, both my neuro and rheumo rely heavily on trying different medications. It really is all they have at their disposal. I'm not sure what type of testing you've had but the specialist usually order a lot of testing. They know what to look for

Baba,

Initially, I went just about every month (only during diagnostics), but then it stretched out to every 3 months while we were tweaking treatments, and now that it's simply maintenance, I go every 6 months.

All doctors are different when it comes to scheduling and how busy they are. My neuro only sees patient once a week (rest is research/academics).

A good doctor is intrigued by symptoms that are different or outside the box, and therefore sometimes more interested.

When it comes to nerve related problems (that are not caused by structural or compression issues), then yes, medications are the topic of discussion in hopes of alleviating your symptoms. It takes time and patience to find the right drug or combination of meds...and of course supplements to improve your quality of life.

Make sure you write out a short, but thorough summary of your symptoms...a timeline is best with dates and onset of specific symptoms and anything that may have coincided with that time period...like infection, antibiotic use, injury, surgery, significant stress, etc

Then also make a list of your most bothersome symptoms (in order of priority to discuss). You will not likely be able to cover EVERYTHING on the first visit, to make sure you discuss the worst symptoms first and things you need addressed immediately.

Add to your list any questions you have...trust me, it is very easy to forget things in the chaos of the first visit, when he may change the direction of the assessment from where you think it should go.

Discuss testing, and what he plans to look for (that includes labs, and other testing).

How often are you seen?
Not often anymore. My PN is idiopathic (no known cause). I was seen monthly at first, then every 3 then 6 months as each identifiable cause was ruled out.

How long does it take to get an appointment?
Several weeks sometimes. Apparently neurologists are extremely busy these days, or there is a shortage, or both.

Do they even care if your symptoms are different?
Mine don't and haven't. They seem to prefer to review tests and try different meds. I've had two neuros that barely spoke to me (well, there was a language barrier with one).

Is is just all about adjusting the medications?
After testing to identify potential causes, it gravitates more towards symptom management.

I first called the neurologist in April, didn't wee him until June, then he set up a nerve conduction study in July, now I am just dpseeing him for a punch biopsy next week, at this rate, I may have a Dx by Christmas... I thought to schedule them all at once, get a time slot for each test just in case... It is difficult to wait 3 months when you are in pain, but since I have had it since 1984, I figured what is a few more months? I think when I get my Dx I will just have the Rheumy handle the medications, as she is more exsesable. She put me on 1500 mg of ALA, for the neuropathy pain, but no help yet, I think ALA only helps for diabetic neuropathy, which both the Neuro and the Rhuemy was trying to shove me in that box, even though I have had PN a lot longer then elevated blood sugar.
Good luck with your office visit!

My neurologist was very interested in the beginning, and did an EMG at the first visit. The results were pretty advanced- my feet were totally numb to the ankles at that point and I had noticeable muscle weakness. She saw me every month for a few visits to titrate up the Gabapentin, then every three months. She was pretty sure that I had Charcot Marie Tooth, hereditary neuropathy, type 2 which affects the axons first. It is progressive and there is no treatment beyond symptom management.

After a year she sent me to Johns Hopkins, which is about 90 minutes away, for a second opinion in case there was a possible treatable diagnosis that she was missing. They did a skin biopsy which showed that my legs were devoid of small nerve fibers at the ankle, reduced above the knee and breaking down at upper thigh, another EMG showing multiple pinched nerves, and a large number of blood tests, but otherwise the diagnosis stood.

When I returned to her for a follow up she said there was no reason to continue coming as there was no treatment. When I asked if we could re-test periodically to see what was happening she said there was no need since she knew it would progress and testing would merely confirm that. I did say that I felt better seeing her but she said it would be taking money under false pretenses and there was nothing she could do. She does not handle pain management. I left the office in tears and was depressed for days as I really liked her but she was, in fact, correct.

My PCP prescribes my pain medications and has been extremely helpful. He has tried to learn as much as he could about CMT as I am his only patient with it, but he handles a lot of diabetic neuropathy sufferers, so is familiar with many of my symptoms. Sometimes new things come up and I think about going back but she was very definite that it would be a waste of time. Even the doctor at Hopkins, who offered a spinal tap and further genetic testing agreed with my decision not to pursue it. I received a very cordial "Good-bye and good luck" from him.

I would rather have a little more hand-holding from the doctors with this but I do appreciate the honesty and respect that both neurologists displayed.