My first neuro visit, a good experience
 

I had my first visit to a neurologist this week and it was a good experience. My dread had been building all week, for what he might find and also for how I would be treated. I have heard some really bad stories about how Doctors respond to PN so my expectations weren't high.

So what happened, the advice on this forum and this blog by Dr Rob Lambert helped me to prepare. I made a list of my symptom history and questions so that I wouldn't forget during the consultation. I also brought previous scans and other records that I thought he might want to see.

Despite my anxiety I was careful to be courteous and not to rush. The Doctor in turn was patient, read the medical notes I had brought along and he asked me a lot of questions to build a detailed history. I could sense a rapport building through this process.

He then conducted a very slow and detailed physical exam that must have taken 20 minutes. This involved a lot of strength and coordination tests as well as a lot of prodding and reflex tests.

For me this was very reassuring. It reminded me of the ritual of medicine as described in this wonderful talk by Abraham Verghese: A doctor's touch. This is a video that all Doctors and patients should watch.

So I don't have any definitive answers yet, I definitely have some muscle weakness in my feet that is causing my pain, along with numbness and tingling. Next are some MRIs, EMG and a follow up visit, But I'm okay with this, I know I won't be in a wheelchair any time soon, and I have hope! I can learn to live with this condition, it has knocked me out of my complacency and allowed me to see my life for the blessing that it is.

There is a truly wonderful video that I have watched several times, that has lifted my spirits - gratitude

I am very happy for you. It seems as though you really lucked out and got a good neurologist who actually listened to your concerns. I think I'll check out those links, so I can be better prepared when I meet my new doctor next month.

I am glad your doctor is taking a proactive approach, and I hope you find a cause of your PN, or at the very least, some decent treatment.

Thanks, I'm sure that there is a bit of luck involved and I'm no where near finding a cause. For me the main thing was that he cared and provided some reassurance which is what I needed. While will power alone won't make things better, I'm convinced that getting my head in the right place will have a huge impact on outcomes. In this forum I see a lot of people who get on with life and are a real inspiration.

I am reminded of the stories form World War 2 prison camps, those who survived unbelievable odds were often those who felt in control of their own destiny. Of course this easier said than done.

Hi RideOn,

In the interest of saving some typing....
http://neurotalk.psychcentral.com/post839722-8.html

Doc

Thank you for the update.

Attitude is so important with PN. Fear, anxiety, anger, all stimulate the release of cortisol, and this when done in excess, goes to the brain and changes things there. The hippocampus is a typical target, but other changes in the brain are being discovered too.

The last seminar I just attended, had some information about
cortisol which I'll pass on here. When we have a "flight or fight" reaction to stress, (a big reaction that is), the cortisol is released very quickly... but then you know what... it hangs around for over 8 hours doing things we really don't need.

So while "flight or fight" evolved for us to have a burst of energy to run away or deal with danger, constant stress, or constant release of these hormones, leads to problems.

I am beginning to believe that the l-theanine that was recommended last summer in Dr. Blaylock's newsletter, to help PN is actually working for me this way. It is blocking anxiety and hence extra cortisol for me. I take 300mg at bedtime, still.

I started this last August. I am using Doctor's Best now after a disappointment with Swanson's brand. I started with Doctor's Best, but when I returned home from vacation I ordered Swanson's to try... it was not the same .... So I went back to Doctor's Best. It really works for me.
http://neurotalk.psychcentral.com/post786294-1.html

I am glad for you RideOn, that you are managing your days well. I've had anxiety much of my life, due to a painful childhood, and it has been difficult for me. I do relaxation exercises, similar to autohypnosis and that has always helped with my pain issues, over the years. I learned it long ago.

But the theanine is also a big help.
Here is another website with details:
http://web-us.com/l-theanine_anxiety_reducer.htm

Keep up the good work and keep us here in the loop.

mrsD, I have battled anxiety for my whole life. In a funny way at least I'm better prepared this time, but it's still a struggle.

What did you think of the Doctor's Touch video?

I love bike riding and climbing mountains is always a struggle especially if you look how far it is to the top. An older experienced rider once gave me some great advice, to climb the mountain only look a few meters ahead. I think PN will be the same for me, except we don't get to the top.

I am watching the TED video now. It is very germain to this forum, as being observant and involved is what every person with PN needs to be.

Sometimes it can be a small and even invisible thing that sets the PN off. Sometimes the trigger is in the past (vaccines or certain drugs)

Thanks for posting the video!

Ride-on, l am so glad you had a great experience. Did he get you to stand with your feet together and walk with your eyes closed? Did he also get you to tap your foot with your heel down and tap your hands?

These are some of the things my neuro did with me.

Just got my huge report and Nerve Cond results yesterday on paper.

Sue

Lots of walking, balancing, touching with eyes closed, strength tests of hands and feet. He also tested touch sensitivity using cotton wool, a pin and a vibrating tuning fork on various parts of my feet. Didn't do the tapping tests.

Main thing was he was very patient and caring in his approach.

Did you actually get a chance to ask any questions?
I felt rushed in my consultation. Now getting second opion.
Getting a referral sent to Wai Kuen Leong in Perth.

See what happens.

Sue

Yes, plenty of time for questions, although even with my notes there were still a few questions thatI forgot to ask. I'm due for a follow-up in a few weeks and I've booked in with Wai Kuen Leong for a second opinion in June

Are you flying over to Perth for this appointment?
When l rang her last week, l was told she was away on leave and will be back mid May.
It will be interesting what she sais.

Sue

She is on leave so my appointment is not until mid June. I live in sunny Perth :)

Your fortunate to be seeing her. My doctor has sent her a referral, but l am not sure if l will fly over to see her.

I live in Noosa, used to live in Geelong.
Been in Noosa for one year, and since moving here, my healthy has gone downhill. Wondering if its something in the environment here.

Sue

I thought Noosa was paradise, particularly the weather compared to Geelong.

It is paradise. Love it here, but miss my mum heaps.

There are things which are better here, such as beach, weather and lifestyle. But it greatly lacks in education and health care. Can,t even compare to Victoria.

Sue:)