Gather round people, I'll tell you a tale of a great mystery... Of a certain magic potion that causes dire ills to a victim even before they have swallowed it!
I'll backtrack a little to last month.
Last month I found me a new doc. I was looking for a new GP as my current one is overloaded and uninterested in me any more now that I have my FND diagnosis. He told me to go and live my life and stop trying to find answers. Nuff said.
So I thought I would look for someone who specifically dealt with people with fatigue and I found an interview online by a local radio station. A woman with severe ME/CFS was being interviewed and this doctor was acting as the professional voice of the article. He sounded like he was the bee's knees in caring for people with such problems.
I needed help. I was feeling very ill with new symptoms of dry mouth and metallic taste as well as much worse ptosis and exertion intolerance. I could hardly walk a few steps without dizzying, nausea and collapsing. I was also getting seizures - or something like them - much more frequently. I was run down and feeling awful.
So, I went to see him. He seemed quite interested in my long story and took some time to listen and learn. I liked him. He said that I may have Myasthenia Gravis and although I have been tested for this, I hadn't had all the tests and I hadn't had a drug trial. Mitochondrial Disease was another possibility. Incidentally, I have no idea why he didn't go with ME/CFS. He suggested FND would be the last thing to investigate after other avenues had been exhausted so I liked him even more.
He prescribed some Mestinon as a trial and said we would monitor it over the next couple of weeks. I received a warning that I may get nausea and some people throw up bad, so I was aware. Mestinon has a short life and, if it did cause bad side effects, they would not last long.
I was happy to try the tablets - anything if there was a possibility of relief. I took a very low dose for 3 days and unfortunately ended up getting run into hospital after my friends decided enough was enough and my seizure activity just wasn't going away as it usually does. I didn't know my own phone number and I wasn't all there most of the time.
As usual the emergency doctors were whispering "pseudoseizure" over my head while I lolled in the wheelchair completely incapacitated. But I did hear them. And it hurt. They decided that due to my previous history of FND and pseudoseizures it wasn't an emergency and decided to send me back home until a physiotherapist examined me at the last minute. As usual. It's always the physio that notices a problem. He reckoned it would be unethical to toss me out on the street. So I got to stay. For 2.5 weeks.
Guess what they put the worsening symptoms down to.... the Mestinon! No matter how much I told them the symptoms happened BEFORE I took the tablets AND the tablets were an attempt to address the symptoms, they did not believe me. My discharge paper stated that I had taken Mestinon and all the symptoms were "consistent with reaction to anti-cholinergic". I asked the pharmacist who said these so called "side effects" were not "consistent with taking anti-cholinergic" at all. Plus they had such a short life they would not still be making me sick days after stopping them, especially at such a low dose. Surprise, surprise. They also wrote that I was having an "FND flare up". I don't even know if you can have a "flare up" if you have FND. One of my symptoms they described as "falling due to knees giving way". Can they lose with this one? All bases covered.
I came out of hospital feeling much better - why? No thanks to the quacks! It was a dietician, alarmed at my low muscle tone and lack of energy who put me on a high protein diet. So far it's the only thing I have ever had that has helped.
I thought perhaps there should be a committee set up to grant the award of the Golden Shoehorn to those medicos who force symptoms and falsify patient histories to fit a diagnosis. They'd be firm contenders, doncha think?
I'll backtrack a little to last month.
Last month I found me a new doc. I was looking for a new GP as my current one is overloaded and uninterested in me any more now that I have my FND diagnosis. He told me to go and live my life and stop trying to find answers. Nuff said.
So I thought I would look for someone who specifically dealt with people with fatigue and I found an interview online by a local radio station. A woman with severe ME/CFS was being interviewed and this doctor was acting as the professional voice of the article. He sounded like he was the bee's knees in caring for people with such problems.
I needed help. I was feeling very ill with new symptoms of dry mouth and metallic taste as well as much worse ptosis and exertion intolerance. I could hardly walk a few steps without dizzying, nausea and collapsing. I was also getting seizures - or something like them - much more frequently. I was run down and feeling awful.
So, I went to see him. He seemed quite interested in my long story and took some time to listen and learn. I liked him. He said that I may have Myasthenia Gravis and although I have been tested for this, I hadn't had all the tests and I hadn't had a drug trial. Mitochondrial Disease was another possibility. Incidentally, I have no idea why he didn't go with ME/CFS. He suggested FND would be the last thing to investigate after other avenues had been exhausted so I liked him even more.
He prescribed some Mestinon as a trial and said we would monitor it over the next couple of weeks. I received a warning that I may get nausea and some people throw up bad, so I was aware. Mestinon has a short life and, if it did cause bad side effects, they would not last long.
I was happy to try the tablets - anything if there was a possibility of relief. I took a very low dose for 3 days and unfortunately ended up getting run into hospital after my friends decided enough was enough and my seizure activity just wasn't going away as it usually does. I didn't know my own phone number and I wasn't all there most of the time.
As usual the emergency doctors were whispering "pseudoseizure" over my head while I lolled in the wheelchair completely incapacitated. But I did hear them. And it hurt. They decided that due to my previous history of FND and pseudoseizures it wasn't an emergency and decided to send me back home until a physiotherapist examined me at the last minute. As usual. It's always the physio that notices a problem. He reckoned it would be unethical to toss me out on the street. So I got to stay. For 2.5 weeks.
Guess what they put the worsening symptoms down to.... the Mestinon! No matter how much I told them the symptoms happened BEFORE I took the tablets AND the tablets were an attempt to address the symptoms, they did not believe me. My discharge paper stated that I had taken Mestinon and all the symptoms were "consistent with reaction to anti-cholinergic". I asked the pharmacist who said these so called "side effects" were not "consistent with taking anti-cholinergic" at all. Plus they had such a short life they would not still be making me sick days after stopping them, especially at such a low dose. Surprise, surprise. They also wrote that I was having an "FND flare up". I don't even know if you can have a "flare up" if you have FND. One of my symptoms they described as "falling due to knees giving way". Can they lose with this one? All bases covered.
I came out of hospital feeling much better - why? No thanks to the quacks! It was a dietician, alarmed at my low muscle tone and lack of energy who put me on a high protein diet. So far it's the only thing I have ever had that has helped.
I thought perhaps there should be a committee set up to grant the award of the Golden Shoehorn to those medicos who force symptoms and falsify patient histories to fit a diagnosis. They'd be firm contenders, doncha think?
