Found a great neurologist

Hi everyone, 

Thanks for checking in! 

Today's post will be a bit shorter, because I am busy trying to optimize my blog. 

I spent most of the day yesterday trying to figure out how to redesign my blog to make it more reader friendly and nicer to look at. And given that I am a total newbie to homepage design it takes me veeery long.....

I must say though, I am learning a lot doing this, and I hope that I will be ready to take on silicon valley soon💪 I was so proud of myself yesterday, after I edited something in the html code of my design template and it actually did what I wanted it to do🤓 (of course after several fails). I also inserted a like button on my page, which I think is really cool (🤓🤓🤓), so please go ahead and like (or dislike) my site - only if you do of course (on mobile devices it shows up on the bottom - still trying to fix this...). 

I think it looks a lot better now, but please leave a comment if you encounter any problems or if you have any suggestions/complaints. Chances are I won't know how to fix it anyway, but I promise I will try😂. I am also still working on it, so if things shift around a bit, that's just me working. 

I also noticed that my blog cannot be found in Google yet, although it does seem to be indexed, so I'm trying to figure out if this is just a matter of time or if I am doing anything wrong. Most likely the latter is the case.... Like with everything, I had to realize it is a lot more complicated than I initially thought🙈 and that I had absolutely no clue about how Google works. So if any of you have any tips on how to optimize my Google search, feel free to bring them on. 

But enough of the house keeping. 

I will write a bit about my rare disease journey now. 

I left my last post saying that I was scheduled to see a different neurologist because the first one really did not live up to his job description. 

So I went to see the new neurologist one early morning the next week. This was in February 2014. He had come in early just to see me because he had such a long waiting list for new patients, and I am still thankful for that. 

This practice was like day and night compared to the last one. It looked modern, clean, and well organised, just how you want a medical facility to be. The neurologist called me in and asked me about my symptoms. I explained everything and also brought him the article I found, and mentioned that I had self-diagnosed myself with small-fiber neuropathy after my extensive literature search. He was very nice and seemed to understand how much discomfort I was in. He agreed with me that my symptoms were highly suspect of small-fibre neuropathy.

I instantly felt understood and knew that I was in good hands now. So apparently this neurologist could associate my symptoms to a diagnosis after just a few minutes, which really made me question the last neurologist even more. 

He explained that many of his patients had small-fiber neuropathy, but all of them were older and had very slowly developed symptoms, which slowly progress from the toes upwards over years. Usually this is the consequence of some other underlying disease, most frequently diabetes. None of them were as young as me (I was 30 years old then) and none of them had developed symptoms in both hands and feet over such a short period of time without an apparent cause. 

He was very interested in the publication I brought him, in which they reported about patients with symptoms like mine, which they successfully treated with prednisone.

He then did some nerve conduction tests (electroneurography) to test if the large nerve fibers, which control the body's motor function, were also affected. None of those tests showed anything wrong, so at least we knew that I did not have large-fiber peripheral neuropathy. 

This is just a quick explanation so you know what I am talking about (got this classification on the WWW from an anestesiology website - hence the anesthesia comments, which you can just ignore). We have different types of nerve fibers in our body, some of them, the thicker ones, control movement and the thinner ones control sensation, and other body functions. Depending on which kind of nerve fiber is affected you can have motor-neuropathy (large-fiber neuropathy) or sensory-neuropathy (small-fiber neuropathy). With the electroneurography he tested the conduction of the large nerved fibers. Unfortunately, there is no such test to run on the small nerve fibers, so you cannot detect small-fiber neuropathy using nerve conduction tests.  

https://www.openanesthesia.org/peripheral_nerves_sensory_vs_motor/

In the case of small-fiber neuropathy the C-fibers as well as the A-delta-fibers are affected, which control pain sensation and temperature regulation. They also control the sweat glands and the small blood vessels in the skin. 

He agreed with me that it seems like I might have autoimmune small fiber neuropathy, like the people in the article that I had found. 

But he also said that this is so rare, and he had never seen it in his entire career (he was around 55 back then I would guess). So before we try to treat this, we needed to first rule out all the more frequent potential causes of similar symptoms. 

And this was the start of a 2 month-long extensive diagnostic work up to screen for causes of my weird neurological symptoms during which I learned how much patience you need to have as a patient with a rare disease. 

I will write about all those tests and how they went in my next blog post and will get back to trying to figure out my website issued now. 

I hope you all have a great Sunday!

Categories: doctor, test