abetterjulie

How did they rule out Parkinson's or myasthenia gravis? I am noticing that the tremors are worse after activity, but present all of the time. Last night I used my forearms to support my weight briefly, and then noticed that the tremor had extended to include that muscle as well.

I saw Dr. Khurana yesterday at Union Memorial in Baltimore. I made the appt in January, so I was grateful to finally get in with him. He was excellent, and I felt like I was in capable hands. He did a thorough exam (unlike another neuro I saw over the summer) and outlined a plan for testing. He found my pulse pressure to be very narrow after 10 minutes of standing (not a tilt table, just there in the office) at 8 points. Yikes! I have to get him some paperwork, but then he will schedule me to have tests done. He said he has to wean me off the Cymbalta long enough to do the testing, but will put me back on it when it is done. This makes me anxious, as it is the only thing that has helped with my neuro pain. I wanted to thank everyone here on the forums for keeping me sane while I waited to be seen by him. It is greatly appreciated!

Hi, I have developed fine tremors of the fingers of my hands, especially my thumbs. Does anyone else have this? Thanks, Julie

Thanks. Okay, so does the same doctor that I will see for the dysautonomia treat the mitochondrial issues? How should I go about bringing that up with him? I see yours was diagnosed with muscle biopsy?

Does anyone else get sharp, stabbing pains in their muscles? Mine is mainly in the back region. It comes suddenly and then the muscle is tight and painful for days. I am not "doing" anything other than sitting when it happens. Also, I tried to do some arm exercises to keep from deconditioning, but the next day I had such horrible stabbing muscle pain that I thought I was going to puke. Advil took care of it, but it felt so defeating. Ideas?

I am so grateful for this thread. I have been grieving this week for things lost due to my illness. I came here to see if I was alone, and found that I am in good company. I overcame and conquered so much to become a nurse. I am proud of the nurse that I was. I am so sad for the nurse that I can no longer be. I miss the intimacy of an assessment. I miss drawing up meds and knowing what they were all for and why I was giving them. I miss chatting with my patients about ways they could improve their health and their lives. I miss measuring things. I miss being organized for something important, not just organizing to make sure I don't have to climb the stairs more than twice a day. I miss confidence. I miss being the nurse the new person turned to for help. I miss my brain. I am tired of doing word puzzles. I am tired of trying to feel cheery that I ran the dishwasher today or that I cleaned the bathroom. I miss taking walks. I miss orgasms. I miss that good feeling at the end of the day that I filled every moment as full as possible of doing stuff with real results. I am tired of being exhausted from four hours of sitting and doing things that are dull. I miss my dreams of travel and exploration during my retirement. I miss "me". I don't know who this new and fragile person is or what to do with her. She gets in the way, she is needy and insecure. She is fearful and doubtful. This is not the woman I knew. She is angry. I sat in my bathroom last night from 2 am to 3 am just sobbing. I am grateful for my husband and my children. If it weren't for my daughter, I don't think I would have the will to survive this. It just wouldn't seem worth it. Thanks for listening.

I also get back pain. Mine is more muscular in nature. I was having severe nerve pain in my butt and thighs, but medicine has helped with this. My back pain is lower left side and upper right neck down into the shoulder. Sometimes it is so severe that I feel like throwing up. It is good to know I am not alone in this symptom.

My difficulty is that I get so short of breath quickly. I get that way just doing everyday things. Does anyone else experience this...and if so, how have you overcome it? Julie

Hi, I am going to see a specialist in Sept for my positive TTT and various symptoms. This has been a long road and quite frustrating. My questions relate to the definition of POTS. My TTT showed increased HR with hypotension of 70 after 8 minutes. They stopped the test before I fainted. I have never had any syncope. The term POTS confuses me, even though I have done quite a bit of reading and have a medical background. My understanding is that POTS is unrelated to BP? That is more about the tachycardia? The idea of subsets or types is what I am finding confusing, I suppose. Does anyone here have PAF or AAN? These seem to fit the majority of my symptoms. Is the treatment for these different than for POTS? I realize that you aren't doctors, but I could use some "this is what has happened to me" stories to help me relax until I go to my appt. Thank you in advance, Julie