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!

Read More

First (not so great) neurologist

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. 

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....👋👋 

If you want to be notified of future posts, click below to never miss a post❤

Read More

First doctor visit

First doctor`s visit with weird neuropathy symptoms..... 

Hi guys! Sorry I was quiet this week, but it has been a pretty busy and tiring week so I didn't get around to writing (bad blogger....😩... ) 

Besides a pretty busy work schedule with quite a few ongoing projects, the  weather has gotten pretty warm here, which generally is very nice, but unfortunately not great for small-fiber neuropathies....so I have had pretty sore feet this week. 

Anyway, let's get back to 2014 and my first doctor's visit

So I left off saying that I was freaking out about my weird hand and foot pain and that me and Steve decided that I needed to go see a doctor about it.  

My first problem at this point was, that I did not have a GP, because I was used to not being sick much, and as a trained pharmacist I was able to treat most minor illnesses myself. So the next morning, me and Steve  went into a walk-in GP-clinic near our house. Obviously the doctor there, a young friendly woman, had never seen me before. 

She asked me about my symptoms and did some general neurologic examinations, like checking my reflexes and vision etc. One of the first questions she asked me, was wether we ran Multiple Sclerosis (MS) in our family. We don't, but I got quite freaked out, because MS had popped up as one of the first things in my Google search as well. I also knew that it typically first occurs in women my age with similar symptoms. 

For some reason I had this picture in my head of people with MS, who had constant tremor and were  sitting in wheel chairs. It was the picture of the Dad of one of my school friends back in the 90s I had in mind. However, by now I know that there has been so much progress in the treatment of MS (as opposed to other weird neuropathies like mine), that most people with MS actually live a pretty much normal life....

So what did the doc find?

The doc couldn't find any abnormalities while examining me, so at at least I knew that my brain and movements were kind of working normally and there did not seem to be any acute dangers of a stroke or something like that. 

She then took a bunch of blood samples and sent me home to come back in a week to discuss results. This was probably one of the longest weeks in my life....during which my symptoms actually got worse. 

What symptms did I have?

Symptoms got pretty bad when I was trying to exercise or do anything else slightly strenuous or when I was in warm, heated rooms (it was January so everywhere you went was warm indoors). The longer I walked, and the warmer I got, the more painful and hot my feet got; they felt swollen as if they would explode soon. 

I noticed that putting on socks was making my feet uncomfortable and I had some pressure spots on the soles of my feet that were painful when I put pressure on them. It felt like something was stabbing into my foot but there wasn't anything. 

Some nights I had to stick my feet out under my blanket because the touch of the  sheets was painful in a really strange way. I also noticed my feet would turn red whenever they felt most painful and hot. 

In the photo below you can see how my feet looked when they were warm. Guess which foot was more sore there...?😩. 

BTW: Sorry 'I'....one of my best friends has foot-phobia and has fainted before when someone touched her feet....this is now not easy to look at, but at least, luckily I had a pedicure done before - haha. I now know that this phenomenon is called 'erythromelalgia'. 

Of course I continued my Google search and found a whole range of conditions that could cause similar symptoms, although none of them seemed to really fit.....if you are not much into medical stuff you can just skip this, but I though I talk about what I found a bit anyway. 

Conditions that popped up in my Google search were: 

• MS, like the doc mentioned as well: MS can cause similar symptoms with tingling and weird sensations, but because the origin of the problem (inflammation) is in your brain or bone marrow, your skin does not actually turn red - at least not as far as I knew. Also it is very rare that both hands and feet have symptoms at the same time.
• Neurologic Lyme disease: a late complication of a Lyme infection after a tick bite - we do live in a Lyme disease area but I couldn't remember being bit by a tick since I was like 3 years old - but you never know.
• Brain tumor.... 
• Thyroid problems: I did not feel any other symptoms of thyroid problems, such as tiredness or nervousness or anything......
• Vitamin B deficiency (I ate totally normally so that seemed a bit unlikely but they did test for that in my blood)
• Heavy metal intoxications, which is pretty hard to catch in a country like Switzerland but again you never know.
• HIV: also very unlikely and I had been tested for this before in a routine check. 
• A diverse range of other STDs like syphilis and so (yei....hmmm) 
• Alcohol abuse: I didn't drink excessively unless I was binge drinking while sleep walking - but I guess I would have noticed a hangover....
• Intake of illegal drugs: did not do.... 
• Celiac disease: I love bread and pasta and never had problems
• Blood cancer like lymphoma or leukemia - scary....but I did not feel tired or anything
• Some other systemic autoimmune diseases like inflammatory bowel disease, rheumatoid arthritis, Sjögren's syndrome or lupus, but again I had no other symptoms that would point towards any of these diseases
• Sarcoidosis and some other really rare things I knew nothing about...

All tests came back normal....

A week later I wen't back to the clinic and the doc told me that they had found absolutely nothing wrong in my blood values; I had no increased inflammation markers in my blood (so an infection or any of the listed auto-immune disases were unlikely), and my vitamin B levels were good, folic acid was fine, thyroid hormones looked good, blood count etc looked good (so leukemia or lymphoma was unlikely but they did not do an in depth check up), iron levels were good, electrolytes were fine...They also checked the proteins in my blood, in which you would see major abnormalities in my immune system and certain kinds of blood cancer (actually I am really not sure about that....) but they looked good too.  

Stress is always a convenient scapegoat....

And then it happened the first time. The doc asked me: did you have a lot of stress recently??? I answered to her that obviously having weird and limiting symptoms that YES I was stressed, but before that I was actually having a period in my life that was comparably stress-free. The year before I had finished and defended PhD as well as completed my training in clinical pharmacy, which was really hectic. 

This is one of the reasons I really recommend anyone to sign up with a GP, so that in case anything like this happens, your GP has at least seen you before and can tell how you usually react to stress and so. I do not want to do any wrong by the doc, she did take me serious and promised to try and get me an appointment with a neurologist. 

I also do know that stress and psychiatric diseases can absolutely cause similar symptoms, but it just felt very disheartening because I was personally convinced that these symptoms were physically there and that they were not a reaction to stress. I think you can absolutely tell this for yourself, but obviously it is harder for someone who doesn't know you to tell. 

So she said she would make an appointment with a neurologist, so that they could look into a potential MS diagnosis more closely. The day later she called me up and told me that the 'good neurologist' they usually work with had a waiting list of about 2-3 months, but that she found another neurologist close by, who did not have a waiting list and that I could go see him in a few days. I now DEFINITELY know why this guy did not have a waiting list.....but at that point I was very glad I had an appointment. 

This has already turned into a pretty long post so I will talk about the weird neuro doc next time. I hope you all enjoy your weekend.  

Steve and I will now attempt to make our own ginger shots. Steve likes to drink these ginger shots, which are hyped in all the super markets at the moment, and given that they are meant to be good for your immune system I drink them as well occasionally (can't hurt right?🤨). 

Anyway, they are really over priced and since it is pandemics-time and we have not much to do anyway we will make our own today. I can tell you next time if it is worth a try😃

Have a great weekend you all!! Thanks for reading my blog....

Read More