It’s been a while since my last health update in English. so here it is. The pic above is from my previous flight to the borrelia clinic in Germany (it’s some part of Munich in the pic).
There’s lots of things happening in two fronts — my original and still ongoing daily (probably) neurologic problems, and my Charcot foot (the fractured one caused by Type 1 Diabetes).
I decided to launch a new probe to my original, main problems, which include but are not restricted to:
- Burning sensation in my forehead (between my temples)
- Severe concentration problems because of that ^
- Muscle weakness in legs and arms
- Massive, ongoing overall tiredessness / low power
- Dramatic change in my personality
- Balance problems
- Dizzyness and disoriented feeling
- Kind of a brainfog which is constantly there, but goes in waves
- Lots and lots of stomach problems
As a reminder to those who haven’t read my things before or are otherwise new to my situation, it all began in December 2016, when I suddenly lost sensation of the entirety of my body’s left side. In the hospital, they found meningitis, a single abnormal plaque in my brain MRI and all of my IgG results over the top of the reference value span.
I could go on an on what else has happened after that and duriing that first hospital visit even, but I do not have the energy to go through it all today. So let’s jump into two lines of investigation I’ve hopped on during October 2019.
A new neurologist at a private clinic
This one was a good find (in Hämeenlinna, Finland), since he seemed to listen to me more than any other neurologist before. He had patience to listen to all of my symptoms etc, and all of the history I managed to verbally export from my mind.
With this information and the results of my latest MRI (done in October also), hundreds of lab results etc, he made the conclusion that I probably do NOT have MS (multiple sclerosis), which was one of the things they suspected in the initial 2016 hospital visit.
The manner and logic in which he explained the conclusion to me, made me tip over to carefully accept it. Now, he did not rule it out 100% and more MRIs might be needed in time, but for now, I’ll freeze this line of investigation. Maybe we’ll come back to this like next year or so, if still needed.
Then he started to talk to me about something no neurologist earlier had talked about. He told me about some nerves or nerve lines or something, which go to the area of forehead and between the temples, where I have this burning sensation. Apparently these are called either Auricularis Post or Auricularis Magnus.
Taking in account that I do have multiple types of neuropathy already active in my body because of Type 1 Diabetes, he suggested that he could inject some cortisone to the base of these nerves. In a best case scenario, this could numb the nerves, which in turn could end the burning sensation if it’s caused by nerves working erronously because of neuropathy.
So of course I showed green light, and he id 6 injections, 3 on each side. He said that if it had any effect, I would feel it within about a week.
In the days after the injections I tried to interpret what I’m feeling, but also generated a full flu which of course messed up any attempts to try to feel what’s really going on. Maybe some decreasing in the burning on 2nd and 3rd days after the injections, but then again now over a week after it, the burning is back, and I really can’t say for sure it was never fully away because of the flu messing everything up.
So, I’ll probably have a second visit to the same doc to get the same injections when I’m first cleared of this flu. Logicallly thinking, this could have a chance to ease the burning, but then again, it probably would not affect 80% of the other symptoms in my body.
The BCA-Clinic Augsburg
My visit to the BCA-Clinic in Augsburg, Germany, was something I had been waiting to do for a coule of years already, and this October I finally did it. They have specialized in finding all kinds of Lyme’s diseases and tick-related diseases, including chronic borreliosis.
Because of the IgG and some other borrelia / Lyme’s disease related values in my lab tests have constantly been over the limits, I wanted to have a real confirmation to the possible status of borrelia in my body.
The first visit is now done, and I have to say that that Frau Doktor who I had the appointment with, was so extraordinary thorough with her questions, assessing me and clinical checkup and everything, that I felt that I’ve come to the right place.
In the clinical checkup she noted that some of the spots/rashes on my skin would fit in one type of borrelia, and ordered some more tests to be done in Finland (a stomach ultra and a more detailed ECG). In addition, they took like a barrel of blood from my arm at their own lab.
I’m going back to hear the results and bring my ultra/ECG results etc in a couple of weeks, in the end of November. However, today I already got a glimpse to the lab results. As expected, at least when looking them as a total layman and with no medical training, they show that I do not have a nee or fresh borrelia / Lyme’s disease. But that was to be expected and I knew there’s no such thing in my body.
However, in terms of searching and possibly identifying a chronic borreliosis / Lyme’s disease, it MIGHT be that there’s something in the lab results which indicate that. I’ll let Frau Doktor do the real world analyzing, but at least 24 of the about 50 test results were marked clearly as either over the reference range, under the reference range, borderline or “positive”.
But I’m not tormenting myself with that result list, I’ll just trust the doctor there, so I’ll keep you updated after the second visit.
The fractured charcot foot has been MRId about a month ago, and the results are about as follows:
- The active phase of Charcot inflammation is winding down (this is good)
- The fractures are still there
- The fluid near the joints are still there
- There’s some longer fracture line near the fifth toe’s base
- There’s still temperature difference in the feet (Charcot feet is at least 1 degrees warmer than the healthier one)
- Open cast at least for 6 months still
- Can maybe try to let some weight to the leg in the coming months
Next checkup is in January, so let’s see how it goes. What comes to the everyday life with it, I roll everywhere with the wheelchair, but do take a few steps there and there, e.g. when going to the toilet seat or climbing an aircraft’s 5-6 step stairs, with the help of my crutch.
So there you go! Feeling a bit mixed at the moment.