All tests came back normal

Hi everyone! 

Good to see you back! 

First of all, thanks for putting up with my amateur website management💙  

As some of you have already told, for some reason the update emails stopped working and you didn't get a notification on Monday.... 

BUT you did get random emails notifying you of old posts.....sorry about that. It wasn't click bait, it was just me being lost 😅 I still haven't figured out what the problem was but I did change the email provider and cancelled the old one....So fingers crossed it will work now🤞. 

So if you received an email by 'follow.it' asking to confirm your subscription - that's me. You can go ahead and confirm 😁 

Steve and I are also still working on the display of the blog on mobile phones, as it looked a bit wonky.....we realized the way to silicon valley may be a tiny bit longer than we originally anticipated - but we'll get there 🧠 

At least we got the comments working on mobile again yesterday - yei! 

I'll probably get my COVID vaccine next week...

First of all, I have an update. I will likely get my first shot of the COVID vaccine some time next week💉💉!

I talked to my neuro Prof today to discuss the whole logistics of my infusions. 'Neuro Prof' sounds so clumsy - let's call him Prof. Wexler (not his real name) from now on...I probably shouldn't write his real name all over the WWW, although I do not intend to write any bad things about him..... 

So the hospital has now ordered the daratumumab vials from Janssen and should receive them sometime soon. We discussed whether or not I should get the COVID vaccine beforehand. Prof Wexler thought it would be good if I could do it before, although I am not a very high risk patient, because the vaccine is not going to work well for several months after. Basically, daratumumab will kill the cells that are responsible for antibody production, which are needed to create the vaccine response. 

So I had to call the vaccine hotline of the hospital, and it turned out that they have some shots reserved for patients where your treating physician thinks the vaccine is required and writes you a referral. So we did that and it seems to go through....one step further💪💪 but let's see. 

I dont know which vaccine I will get, but I assume it will be either the Moderna or the Pfizer one, because they are still the only two that are currently licensed in Switzerland. 

I was a bit worried in the beginning, because I wasn't sure if messing around with my immune system was the best idea when it is already kind of in over-drive. But after all I think it is the only reasonable thing to do because I don't also want to be immunocompromised and not vaccinated. Plus, from what I heard, these vaccines are tolerated pretty well. 

I will keep you posted on all that.....

But back to the purpose of this blog....neurotalk.... 

I will write a bit more about all the various tests I did back in 2014 when my symptoms first started. So my new nice and excellent neurologist (let's call him Dr. Soland (again not his real name)) had already done an electroneurography (ENG) during my first visit, and noted that the large nerve fibers were ok. He also agreed that my symptoms were highly suspicious of small-fiber neuropathy, but he had no clue where they came from all out of the blue. 

So the big neuropathy workup started...

To understand where my symptoms come from, and to rule out some possible causes, I had to go through a vast range of tests. First, they took some blood and sent it in for further testing. I just checked my print out from the lab back then and the things they tested for were: antibodies against Lyme disease, syphilis, campylobacter jejuni (which is a stomach bug that apparently is a common trigger of acute systemic neuropathies called Guillain Barre syndrome). 

Lots of blood tests...

They also checked some antibodies, which are commonly found in rheumatic diseases (called ANA and ANCA), as well as my overall levels of the different antibodies (G, M, A) as well as some immunological details about them.... 

A few days later, all those tests came back normal/negative..... Well actually my IgM levels did come back slightly too high, but nothing out of the ordinary and Dr. Soland was not alarmed. Based on some recent research publications I now think this may be (very uncertain) a clue actually, but I will write about this some time later.....

Then an MRI...

So as a next step, I was sent for an MRI of my brain and spinal cord to check for multiple sclerosis (MS) again. I wrote in one of my last posts, that the first weird neurologist I went to had already done some tests, which made it pretty unlikely that I had MS. Dr. Soland, however, explained that we should be sure to rule it out properly, and an MRI is the standard test for it. 

He explained, that MS is comparatively a lot more frequent in women my age (than other weird neuropathies) and can manifest in so many different ways, so that you need to look at it properly. An MRI could detect whether I had lesions of inflammation in my brain or spinal cord, which are usually the cause of MS symptoms.

How did the MRI go?

So I went into a separate imaging clinic for this MRI some time in March 2014. The procedure overall is a bit of a special experience, but not too bad at all unless you have claustrophobia, in which case I think you might need a tranquilizer before💊. 

I had to lie on a bench, which rolled me into one of these machines for about half an hour. It feels kind of claustrophobic in there as you lie in a narrow tube with thick walls around you and all you hear is really loud hammering noises and the music they play on your headphones. You also get an emergency button, which you can press in case you freak out, and you can always talk to your nurse via the built in microphone. 

I was pretty nervous when I got there, but not really because I was worried about the procedure, but more about the fact that I might find out I had MS or something else wrong with my brain on that day. The nurse who looked after me was very nice, and she realized that I was quite nervous about what they might see. 

Did they find anything in the MRI?

The weird thing with these clinics is that you don't actually get to see a doctor. There is a radiologist there, who looks at the scans as they are taken, but he/she is sitting in a dark room in the back and will transmit whatever result to your treating physician for further discussion. 

When I asked the nurse if she could tell me anything, she said that she is not officially allowed to tell me any diagnoses, and that my neurologist would get the results and talk to me. 

But I think she felt sorry for me and after a moment she looked at me and said that she could tell me that much: the radiologist in the back looked quite relaxed, and if he had seen anything wrong they would always ask for a second exam where they would apply contrast agent before the scan as well. They did not ask for this, so I could be pretty sure I did not have anything structurally wrong in my central nervous system (CNS). 

I was really happy about this news, and about the fact that I had a kind nurse who was willing to bend the rules a little bit. That made a huge difference, because otherwise I would have constantly thought about what may be for the next days.....

So about a week later I went back to see Dr. Soland and he told me what the nurse had already told me. They had found nothing wrong with my CNS and I, most certainly, did not have MS and also no brain tumor. 

BUT they did find a little lump in my thyroid

Dr. Soland told me that this is something they find often, and many of these nodules are not bad, but I should go and get it checked out at some point.....In the picture below you can see my spine (side view) in the MRI, as well as this stupid nodule in my thyroid, which is highlighted in yellow😡😡😡 

BTW: I was later told, that the thing I highlighted is not my nodule but something in my brain stem (thanks my very clever Doc friend V😘).😂😂 😂

I did not manage to find the thyroid nodule on the scans, but I can assure you it was there somewhere.....Somehow there are a lot of things that look like nodules to me on these scans so I'd better stop searching 🙈 Thankfully nobody tried to remove parts of my brain stem - haha. Lucky I don't work as a radiologist....

This random stupid nodule😡😡 (you can tell we never became friends....) turned into a year-long needless medical complication, and I had much rather never known about it....but that is a whole other story I might write about later.... 

I can definitely say today, I would never sign up for any scans, which I do not need 100%...

I still can't believe that there are actually clinics that offer whole body scans as routine check-ups, and make it sound like this is good prevention. In my opinion that is a massive fraud. You can find so many things in any scan, which the docs cannot ignore but also don't know what to do with.....and before you know it you may be missing a few organs......

So in case you are a doc and you see anything on this scan - don't tell me - it's old anyway!

But back to the neuropathy workup...

So me and Dr. Soland had already done quite a few tests and still hadn't found any clues about my weird neuropathy symptoms.... And because Dr. Soland is a thorough doc, he was not willing to give in and try treatment without testing for everything on his schedule. I started to get a bit frustrated about this because it seemed to be never ending, and I was in constant discomfort, but I'm sure he was right..... 

Next step was a spinal tap...

So he said the next step will be to do a spinal tap, which is a procedure where they stick a needle into your spine, a bit above your butt and they get a tube of liquid from within your spine to examine. From what he explained, it didn't sound too scary, and he said it was a routine test he could do himself in his practice. So I was not too worried about it....but boy, did that turn into a nightmare.....much worse than an MRI in my case....😖

I will get back to you writing about this spinal tap in my next post, because there are definitely quite a few things I can tell you about that procedure and especially about the week after......

Until then....thank you all so much for reading my posts and for hanging in there with my spam emails and everything 🤗🤗🤗🤗🤗🤗 

Categories: test