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....

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The start of my neuropathy symptoms

I remember the exact day my neuropathy symptoms started...  

The first time I felt neuropathy symptoms in a foot... 

It was January 14th in 2014 and I was 30 years old. I came home from work on a rainy, cold, and wintery Monday. I work as a pharmacist and scientist at a hospital, so i mainly do office work. 

When I took my winter boots off at home, I noticed that I had strange foot pain. The toes on my right foot felt strange; They kind of felt cold and numb, as if I had just done a long winter hike, but actually I had just come from the heated grocery shop and wasn't cold. 

I didn't think too much of it, and thought it might just be a minor injury from the run I had been on the day before. I bandaged them up with some cold cream before I went to bed. The next day the symptoms pretty much stayed the same and I didn't think too much of it still.

Two days later both feet were in pain...

On Wednesday evening, I had made a plan to try an outdoor bootcamp sports lesson with a friend. I was kind of dreading it, as it was a freezing winter day, but since I had promised I would join I put on my running shoes and did an easy 15 minute run to get to the place to meet my friend. 

The instructor made us do these incredibly exhausting exercises for about 30 minutes on some school playground out in the cold, and already after a few minutes of exercise, I noticed that my foot (the one with the affected toes) started tingling and went painful. It felt like when you get in from a day in the snow and your feet were really cold and then they start warming up, which can be really painful for a while. 

This happened as I was doing my exercise outdoors, first in one foot and by the time we were finished, and I was heading home, it had also started in my other foot. I could not actually run home but had to walk with painful feet that felt like they had ants all over them and like I sharp gravel inside my shoes. 

It felt as though I was trying to run home on a road of sharp gravel with bare feet....unfortunately I was no on my way to a nice day on the beach though.

The next day I developed hand pain too...

The next day when I got up I felt ok and went into work. I remember that I was wearing high heeled winter boots, and when we walked to the cafeteria at some point, I could feel that the forefoot of my right foot was sore to pressure and had weird electro-shock sensations when i put pressure on it. At that point I started to get worried about these symptoms that didn't seem to get better. 

Later in the same afternoon I was working on my computer and I started to feel tingling in my right pinky, which spread over my whole right hand within about an hour. It was a cold January day and my office room was heated a fair bit. 

I packed up, got my bike, and headed home. As I got into the cold and on my bike (with gloves) my hands felt better and I was a bit relieved. On the way home I decided to stop and grab a few things at the grocery shop. As I got into the heated shop from the cold I could feel how my feet and both my hands started to get tingly again and when I was at the cashier and entered my pin code to pay my finger tips were really sore to pressure and felt like they had a weird electric layer on them (it was definitely a feeling I had never felt before). At this moment, I definitely knew something was odd....

I started a frantic Google search...

...what do you do when something is odd....you start googling your symptoms....which is often a good but also a terrible idea, because odds are you are told you have brain cancer....

So far I had not told anyone about my symptoms, as I thought they were so bizarre and I hoped they would just disappear again. I had told my husband that my toes felt weird when it first occurred, but he just assumed that they got better again, as I had not mentioned them again. 

I spent the next few days with frantic Google searches and I also started to search the medical literature - as I work as a scientist with access to many medical databases..... 

But I just could not find anything that really explained my weird foot and hand pain (yet). A few days later we were sitting in front of the TV and I was kind of absently staring into my phone googling stuff. 

My husband asked me what was going on and why I was so quiet (I am usually not a quiet person...), so I told him about all these weird symptoms that kind of made me freak out. He agreed that this did not sound like something we should ignore and he agreed to come with me to see a GP in the morning, as I was kind of freaking out a little at this point.... 

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