Yesterday, I went to Stanford’s Neurology Clinic because they have an autonomic disorders program. I went to get some answers about my autonomic nervous system(ANS) problems and obtain some solutions. Instead, the only thing I seemed to get out of this appointment was disappointment. I am left with more questions, rather than answers.
The doctor reaffirmed that I have POTS, which was clearly apparent when my heart rate jumped to 158 upon standing in the office. He also diagnosed me with Ehlers Danlos Syndrome(EDS), which was something that has been questionable in the past. Being diagnosed with EDS has absolutely no effect on me and honestly makes no difference one way or another because the symptoms are still there. It is just another name for my symptoms and the treatment doesn’t differ. This doctor told me nothing I didn’t already know about POTS or treatments, except for suggesting an exercise regimen. We found a lot of evidenced based data on PubMed(yes, I am a nerd) regarding the positive association between a certain exercise regimen and decreasing POTS symptoms. I was all for that, until I thought about it. How am I going do this when I am exercise intolerant. Also, some days I can barely get out of bed, let alone go to the gym! I am all for trying it but I need to be realistic. He told me, like many doctors have told me, that many young people with POTS “grow out of it”. Again, I want nothing more than to “grow out of it”, but that doesn’t seem too realistic either when I just seem to be having more symptoms and it seems to be progressing. I had blood tests done for autoimmune disorders and will be getting an MRI to check for brain abnormalities, but it doesn’t seem likely that they will yield any positive findings. Lastly, he doesn’t believe that these fevers are ANS related. He has never seen anyone with temperature regulation problems in this way. He said it may be a adrenaline surge causing the fevers but really believes it is infection related. So basically the infectious disease doctor thinks its ANS related problem and the ANS doctor thinks it is infection related. Either way, I am still left with these problems and no solutions. That sums up my Stanford appointment, I still have problems and there are no solutions. It is disappointing, because this was one of my last options for answers and solutions.
I have my new port for hydration therapy, but it is not a long term solution. With all of the problems I have had with ports in the past and the problems I am currently having with the new one, it is not even an adequate short term solution. I was miserable and almost unfunctional in the last few weeks without a port. If this port comes out(it has to eventually because I can’t have it forever), what will happen?
I can sit here and say that everything will work out and that I am accepting things, but that would be a lie. Yesterday, I was upset and beyond frustrated. This has been a true test of strength and faith. For the first time, I am not sure what my next move will be. I am not sure what the plan is or what the next steps are. I am not even sure if there are next steps. For now, I am waiting for these test results and contacting the myriad of doctors in my arsenal. I am not giving up but I am not sure what else can be done. I am not stuck at a crossroads, but a stalemate, until further notice. There is a lot of unknown and uncertainty in this situation. The fear of the unknown is one of the deepest human fears. I don’t think I fear the unknown but I fear the thought of me not being able to reach my goals and fulfill my dreams. That is why I refuse to give up but I am still unsure of what will happen next. All I know is that this is not over.