My name's Aaron; I'm a student in my 20s who has been going through some creepy stuff for the past three weeks now. The collection of symptoms I have is so vague and non-specific, that it's been a real struggle to even just list the pertinent ones, much less come up with a diagnosis >_< Nonetheless, I've found a lot of other people online who have similar symptoms, and like me, they all seem to be in the dark about what's causing them.
So I have sort of a novel idea with this post. Not only do I get people with similar symptoms together and share their stories/solutions, but I'd also like continue keeping in contact with any people who are interested, so that we can support each other more easily by sharing updates/research as they come. My hope is to get together a small group of people on Skype to act sort of like a support group of sorts - maybe if we can pool our info, we can help each other get through this and eventually share relevant findings with everyone else on this thread/site.
So without further adieu I guess I should share my actually story now; I'll try and keep it concise.
The first thing that I noticed was a tingling sensation in the back of my head. It seemed like nothing for a while, but it was so importunate that I ended up feeling the back of my head reflexively (I guess I was subconsciously checking for something abnormal), and came across a small but noticeable dip in my skull. I started getting very anxious about this, and it bothered me throughout the rest of Easter weekend.
Later the next week, I started experiencing what I'd come to know as 'brain fog' - inability to concentrate, impaired memory, emotional detachment, and just a general 'fogginess' as if I were not completely awake. This is the most annoying symptom by far for me and most others who have similar complaints. Eventually, I got so nervous about it that I made a doctor's appointment, and visited a medexpress before that was even up.
The MedExpress guys, needless to say, were not very much help in retrospect. The guy who say me took some blood for testing (CBC, Lyme disease, and some STDs like syphilis), and after a short neurological exam, dismissed me with anti-anxiety pills, explaining that my problems were most likely in my head. At the time, I was considering that seriously as a possibility, just because the brain fog was so weird and I had nothing else to go on.
Several days later though, new symptoms popped up - weird aches and pains, fatigue, and muscle weakness. I was actually quite glad when physical symptoms appeared, because I sort of felt like I was losing it earlier. Anyway, I got through this stuff until the doctors appointment (with my childhood DO) and she was very nice and listened while I related my problems. She took yet more blood, scheduled an MRI, and told me we'd get to the bottom of this, so I feel lucky to have such a good doctor since I know a lot of you have had less pleasant experiences.
So! This was all about a week ago. Since then, I've had the blood work and the MRI come back negative/normal, with only a few exceptions: first of all, my TSH (thyroid stimulating hormone) was in the low range, and secondly, I have a huge deficiency of vitamin D. Other than that, all of my testing is okay, including CBC, WBC, other vitamins, Lyme, etc. and the MRI has ruled out (for the time being) anything like an aneurysm, stroke, or Multiple Slcerosis, which I feared at the beginning.
I'm still waiting on the results of a couple blood tests, including one that measures vitamin B12 and HIV/AIDS test. I am gay and have taken some risks in the past so I can't rule it out, but I feel like it's unlikely.
That's basically where I'm at now. To recap, here's all of my symptoms:
-brain fog (impaired memory, concentration)
-mood swings/emotional detachment (not sure if related to the brain fog or not)
-muscle and joint aches
-feeling of food stuck in throat, neck stiffness and tightness
-tingling in fingertips
In addition, here are some other symptoms whose clinical significance I'm unsure of:
-crazy itchy/dry eyes, seems different than normal allergies
-inability to sneeze (seems to be resolved now?)
Okay, that's about all I can think of :3 I realize that's a lot of seemingly random symptoms, but the list of possible causes I have found to explain them is also quite large. Here's a sample of the most compelling reasons I have right now:
3.pineal cyst? (this turned up on the MRI, but apparently they are benign and normal)
Those are just the things that I have in my mind at the moment as being the most likely. For those of you out there who have been repeatedly tested negative for this, there are maaaany other possible explanations, and I'd be glad to share them with you if you ask. For simplicity's sake though, I'm going to leave it here.
The path forward for me right now is waiting for my follow-up with my PCP, and on the results of the other blood tests. When I see my doctor next, I plan on asking her about the 4 things mentioned above - I'll be asking for a thyroid panel, and another Lyme test since they are often inaccurate. Beyond that, Idk really :s
Thanks for reading through all of this if you did, and please post your replies whatever they may be. I will check this thread regularly and reply back. I'm especially interested in people in my age group with similar symptoms, but if ANY one is interested in contacting me on skype so that we can help each other out, please don't hesitate. My sn is aarontastic13 and I'll be on there lots too. I sympathize with all the students and adults who have had their lives interrupted by this, and I really think keeping in touch with each other online will help in a lot of ways. Thanks!
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