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JRC09

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  1. Hello Rich, I am not really new, but I have not spent much time on the site. I see how knowledgable you are, so I wanted to reach out to you. Maybe my story can help shed some light for us. I am 27 years old, and was playing college football only 4 years ago. When I was 23 I came down with a pretty nasty flu. My first neuro symptom started with an eye lid twitch, by that evening I had full body twitching and internal tremors. The next morning I woke up with autonomic dysfunction, POTS, tonic pupils, frequent urination, etc. A year went by, I thought this would all resolve, until a flare sent all my symptoms into haywire mode. I would flare and recover, and flare and recover but the symptoms never ceased. Here we are three years later and all I have to show for it are documented palpitations and small fiber neuropathy results. My doctors think everyhting is fine, but I feel like my body is under attack...from myself. Has any of your new research she any light on stopping the attack and repairing the nerves?
  2. Awesome! Thank you for the good information.
  3. I am going to see a specialist in Chicago. Seeing that I am very new to all of this, I would like to be able to educate the people supporting and treating me, so I can return to being the 25 year old I was. I know how knowledgable you all are about this disorder, I was wondering where the best and latest research is coming from. I know every case is so different, and that there IS hope for all of us. It suddenly changed my life, and I want to attack it. If any of you caring individuals can direct me to the best of the best, It will be greatly appreciated. I am lucky enough to have a very caring family that can financially support me getting better by any means. Thank you!
  4. Hey guys, I wanted to check in and say that since my last flare I have been feeling a lot better. I am getting an appoitment with Dr. Janice Gilden, in Chicago. I have been able to exercise and run feeling pretty well. Still dizzy, very tired in the mornings, but I have noticed that my tachy upon standing is getting better after the exercise. I have read a lot of your stories, and I feel like my symptoms started very strange. I stated before that I had this weird twitch and tremor the day before the onset of a very bad virus. Then the next day the cardiac symptoms began. I have had this internal tremor and twitch ever since then, and was wondering if this was anyones very first symptom like mine? I highly doubt this is a neurological disease as they don't just happen overnight. I first thought I had BFS, which is a wierd benign twitch/tremor syndrome, but its pretty obvious that has turned into much more. I am just praying that its all part of the pot-viral response, but the fact the twitches and tremors havent subsided makes me think my body is still attacking itself.
  5. Wow, this really is the craziest syndrome/disease I have ever heard of. It looks like I have a tough road ahead of me. I pushed it yesterday to fight through, felt ok but after exercising and walking a couple miles my sleep last night was horrible. Everytime I began to drift off I would get a surge of adrenaline and get tachy. Not sure what to do about that. I want to stay away from meds, so I'm going to try the natural diet/herbs treatments. I am very confused on what happens that makes us get these flares? My white blood cell count was very normal so I don't think my body is fighting itself...what makes us get better? Do the peripheral nerves just have to heal?
  6. Hey Jangle, Thanks for the help. Any and all information would be greatly appreciated. One more thing, if it is an auto immune response, what is the best test to figure out the cause? My mom has a client that works at Quest labs, would that be a good start? Or is Mayo better?
  7. Again, thank you all for the information and support. I will continue to pray, for all of you as well. Thank you!
  8. Thank you all for the advice and support. My friends, girlfriend, and family have been very confused with what's going on with me. I had a wonderful trip planned for my girlfriend and not being able to go really put me in a bad place. I think the anxiety has made things worse, but your kind words have helped a lot. It's crazy how you can go from being a 24 year old collegiate athlete, to barely being able to workout. I hope things get better. Would you guys categorize this as a flare up?
  9. Thank you, I am not sure if that has anything to do with it, I have been pretty lucky in regards to concussions. I am very confident that I have P.O.T.S, and considering my family is self employed, we are not going to use insurance to cover my testing. A TTT will only tell me what I already know, do any of you know exactly which test I need to know to figure out the extent of my nerve damage? On a side note, is this a hit-and-run viral damage that will heal? Or do my new symptoms show that it is progressive and there is still damage being done? Thank you
  10. Hello Everyone, My name is Jon, and I want to explain my crazy experiance to everyone here who seems so knowledgeable about Dysautonomia. Only a year an a half ago I was playing college football, and I was in the best shape of my life. I tore my ACL that required me to have reconstruction surgery. The surgery went well, but was very painful. I recovered and I was able to go out with my friends for New Years eve. I probably pushed myself too hard and started to come down with a nasty bug. I was sitting in class one day, and my eye started to twitch. A day later the twicthes turned into full body twicthing and tremors, and when I stood up, my heart would pound with a very strange sensation. I pretty much chalked it all up to a bad bug, and even tho the symptoms were not as bad, they continued to a point that I just pushed to the side. I lived the past year relatively normal without limitations. I was a little tired, but have been able to workout, run, and experiance a little tachy when working out, but nothing that alramed me. I had been reading a lot about P.O.T.S and thought I was just lucky enough to have very mild symptoms. That was until lask week. I started waking up with more tremors than usual, and could feel my heart beating faster than usual. I also could not stop urinating all weeked, and felt sick, and weak. It was my girlfriends birthday, and I was unable to go on the trip I had planned, I felt horrible. I could barely walk a block without feeling extremly tired. I went to the doctor to get blood and urine tests, which all came back normal. I started going on the internet and looking up MSA and began to get very very nervous, it felt like my body was shutting down. Slowly my body began to regain some of its functions. It has been a couple days, and though I feel better than I did, I wake up in pain, tremoring slightly more, and very tachy. I feel good during the day (little lightheaded), and I am able to do everything I need to do. However, I am very nervous I am going to keep getting worse and worse to the point where I will no longer be able to support myself. How could a virus do this?! Will this ever go away? Will this turn into Autonomic Failure? I am sorry for panicking, but I have been a healthy extremely active person all my life, and I am afraid at 25 years old everything I love to do will be taken from me = ( Jon
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