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The first neurologist I saw did not really care...
Hi everyone, thanks for checking in!
In one of my last posts, I wrote about my first GP visit for my weird neurological symptoms, which included tingling, pain, and redness in my hands and feet, which started all of a sudden back in 2014. Today, I will talk about the first appointment with a neurologist which was a very strange experience.
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| Lesson learned: you are responsible for choosing the right doctor |
So a few days after I had talked to the GP, I went to see this neurologist. It was the only neurologist in the city who did not have a waiting list of several months. I now know that not having a waiting list is probably not the criterium you should go by when looking for a doctor.....but at this point I was just desperate to get some answers.
It felt strange from the moment I walked in...
So I walked into this practice, and the first thing I noticed was that the walls of the entry area were kind of yellow and everything looked as if it hadn't been maintained since the 70s. The neurologist eventually called me in, and he looked equally as antiquated as his practice. The first thing I thought was: why has this guy not retired yet.......???
Don't get me wrong, I don't think that older age makes you a worse doctor. To the contrary, I'm sure experience is one of the most important aspects in medical practice. But this guy just looked older than other doctors I had seen before. Maybe it was also his outdated office and odd behaviour that made his impression extra weird.
He asked me about my symptoms, so I told him that my feet and hands had become very painful and tingly a few weeks ago, and that I had trouble walking and wearing shoes and socks. I even told him that my bedsheets hurt my feet at night.
He did an evoked potentials test
He then ran some unpleasant tests on me to evaluate a potential MS diagnosis. It was a while ago now, but I remember that he placed a device on my head that sent electric shocks through my body, while he measured the transmission of electricity through my body (google told me this is called an 'evoked potentials test').
From my work as a clinical pharmacist, I had learned that you diagnose MS via an MRI, which checks for inflammation in the brain or bone marrow. But apparently this test (although slightly antiquated?) can be used as well to check for damaged nerve pathways.
What does this test do?
I found this picture on Google to give you an impression of what it was (this is not me in the picture). But in my case he actually held some device in his hand that fired electricity into my head and his computer was definitely not that modern - i remember that it actually printed meters of papers with showing lines of electricity transmission....
He told me I didn't have MS
His conclusion was that he was pretty sure I did not have MS, which turned out he was right about. He then also told me that generally he could smell it, if MS was in the air anyway👃. I am not sure if I was meant to be impressed by the super powers he had besides being a pretty antiquated neurologist.
But he also didn't really care where my symptoms came from
He then had no intention to do any further tests or anything. He just told me that I had a nice name and treated me a bit like a child. When I asked him what to do about my limiting symptoms he prescribed me some vitamin B tablets and told me to come back in 6 months (half a year!!!) if symptoms had not improved by then.I was kind of relieved that he said I did not have MS, so I walked out of his practice without arguing much. Maybe I also just hoped that the vitamin B tablets would fix my symptoms, although that was kind of hard to believe. As soon as I left the practice and walked back home, I could feel my feet hurting after just a few minutes, which was a definite reminder that something was wrong, and I felt like this doc did not take me seriously.
So I had to do my own research again
Being a bit of a compulsive researcher who was freaking out, I went home and continued my frantic Google search. I started to also search Pubmed (the medical literature library) as well as UpToDate (the tool doctors use to get expert opinions on drug treatments and diagnoses). I was and still am working as a pharmacist and researcher at an academic hospital, so I had access to all the good medical literature and knew how to look for stuff, which was an enormous plus!
And I did come across something interesting
At some point during the following week, I stumbled across an article on Pubmed, which reported about 4 patients somewhere in the US, who had neuropathy symptoms exactly like mine. The authors wrote that the condition these people had was called acute-onset 'small-fiber neuropathy'. I was instantly convinced that this is exactly what I had.
They wrote that all 4 patients had some sort of mild infection shortly before their rapid symptom onset. This led them to think that their neuropathy could be due to an autoimmune reaction triggered by this infection. They treated them with high-dose prednisone, which is a strong version of cortisone and reduces inflammation and suppresses the immune system. After a few weeks to months, all of them improved and were able to slowly decrease prednisone again. Here is a link to the publication if anyone is interested.
I remembered that I'd also had a slight cold over New Years, 2 weeks before my symptoms started. It was really nothing major, so I didn't think about it or put it in the context of my new weird symptoms. I just had a headache, lack of appetite, and tiredness for a few days. So now I was even more convinced that this is what I had.
So I told my GP about what I found
The next day I called my GP and told her that I was not happy with the neurologist at all. I told her that he did not examine me properly and basically just sent me home without an explanation or even without showing any interest in what I had.
I told her that I just wanted to inform her, that I was going to take some prednisone now because I had found this publication, of which she had obviously never heard of (can't blame her for that😆). As a pharmacist, at least you have the privilege that you can just buy prescription drugs.
Obviously, I couldn't really know that this is what I really had, but I was frustrated that nobody tried to do anything about my symptoms, while I was struggling from one day to the next and freaking out. I also talked to some of my friends, who are (excellent) physicians, and they all agreed that a short course of prednisone would probably not put me in any danger.
The GP called the neurologist...
The GP got a bit nervous when I announced that I was going to take these drugs, and she told me that she was going to call this neurologist herself to hear his medical advice. She probably thought he was going to confirm that he thinks my symptoms were stress related......
...and was shocked herself
An hour later she called me back and was kind of shocked herself. She told me that she asked the neuro on the phone what he thought was wrong with me, and he told her that I probably had carpal tunnel syndrome (CTS). CTS is very common and presents with nerve pain in the hand and wrist, which develops when a nerve in your wrist is squeezed by the carpal tunnel (a bone structure in the wrist). Problem was.....the most severe pain was in my feet, and there is no carpal tunnel anywhere near your feet.....
Obviously he just made this diagnosis up on the spot because he had nothing to say. He never mentioned to me that he thought I had carpal tunnel syndrome, although this would have to be treated as well. So the GP agreed that this doc either had no clue or really did not care.
Still when thinking about it today, I think I should have notified the medical association about this neurologist, because someone like this is a danger to his patients. But at this time I was too caught up with my own problems. I truly hope this guy is fiiiinally retired by now - although I might check on that....
Thankfully the GP took things in her hands again
At that point, the GP realized that something was wrong and that I was not just causing a fuss about nothing. So she was quite nice and said she would call up the 'good neurologist' (the one with the looooong waiting list), to see if he could squeeze me in. She also told me that she didn't think I should just take prednisone before I had been examined professionally by a neurologist, which was probably also a reasonable input, which I did not like to hear though.
The next day she rang me again and told me that the 'good neurologist' had agreed to come in early one day in the same week to examine me. I was very thankful for that and went to see this new doc.
I will write about seeing the new neuro in my next post. I can say that much; it was like day and night compared to the other neurologist - hence the waitlist☝.
Lesson learned: do not blindly trust doctors....like in every profession there are great ones and reeeeaaaalllly bad ones too.
Now this post has already become longer than I intended again so I will leave you all with this. Sorry for crapping on so long....👋👋
1 comments:
Love the meme 😁
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