brand new here and seeking opinions

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brand new here and seeking opinions

Postby Gwen28 on December 11th, 2013, 9:00 pm

Hello all,
Im am a new voice, but have been visiting this site off and on for almost a year. I have yet to be diagnosed and am frustrated.

I began having symptoms last february. It started suddenly at work one evening. I had tingling and vibrations in my hands and feet. I also began having leg and ankle "jerks", like "jolts" I saw my pcp, and was tested for b12 deficiency which came back on the lower end of normal. He began treating me with injections but felt strongly that this was not causing my symptoms. The symptoms where still there and strong a week later and I got myself so worked up I ended up getting my pcp to order and MRI. My MRI of the brain was normal. I was to follow up with neurology. I saw the neurologist approx 3 weeks later, and my symptoms were still there but almost gone at that point. His impression after my exam was possible a very mild form of gillian berre syndrome, considering I had a UTI and finished a course of cipro about one week prior to my symptoms starting. He did a blood workup, MRI c spine and an emg. Everything came back normal except for my ANA was elevated at 1:160. My PCP referred me to a rheumotologist. At this point my symptoms were gone, but approx 3 weeks later they were back. My main symptoms again were tingling and strange sensations and a twitch here and there. ANd this went on from march to may off and on, but in "exacerbations" meaning, it would come in waves. Good weeks and bad weeks. It was never a day to day thing. My Rheumotologist did blood work and a chest x ray. All the testing he ordered came back normal, except my ANA which was still elavated but closer to normal at 1:80. He believed it wasn't rheumotologic and my ANA was "post viral". I also began at this point having muscle like pain in my hands feet and calves. But I never felt weakness, in fact I was running and exercise felt good, although I did feel more sore a day or two after a hard work out than I used to prior to the start of all this. All summer I felt great, I did not have symptoms and I started zoloft which helped my anxiety. In late august, symptoms came back, full force, this time more pain and more twitching. I began noticing the twitching constantly in the arches of my feet, calves, thighs, back muscles, lips and eyes. And its been off and on again to this point. The pain definitely feels muscular. I had a six month follow up with blood work with the rheum., and all came back normal except ANA which is still 1:80. I went back to my PCP and he said that zoloft can make me twitch so he wanted to wean me down from 75 to 50 to see if that makes a difference, which I currently doing. He also ordered me an emg again. I had the test last week, and again it came back normal. The tech said he could see the twitching, but they are benign. I cannot see the neurologist until January. Im just confused and frustrated. I am a worrier and feel my symptoms are worse with stress, and they also seem worse when I have a cold. Im really not sure what to think?!
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Re: brand new here and seeking opinions

Postby Gwen28 on December 11th, 2013, 10:15 pm

I should also mention Gillian Berre was ruled out. Also symptoms I forgot to mention is fatigue and itching at times and cold sensations. Has anyone's symptoms started with tingling and them twitches that follow? Also I do have pins and needles feelings but can't say I ever felt actual numbness.
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Re: brand new here and seeking opinions

Postby johnnythejet on December 12th, 2013, 12:36 am

Hi Gwen-
Although typically BFS seems to start with twitching, its not always the case. And after being around here for a year, I'm sure you're aware that many of us get the other sensory symptoms you've experienced. Vibrations, pins/needles, itchiness, and even jerks are all things I've experienced along with many others. I hope you continue with the doctors and get a diagnosis soon, but at the very least you shouldn't worry that your twitching represents anything sinister like MND. Your set of symptoms and the fact that you're a worrier like many of us makes me believe you fall in the BFS boat. Work on controlling your anxiety (I'm sure you already are trying) and that will likely improve your symptoms.
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Re: brand new here and seeking opinions

Postby Yuliasir on December 12th, 2013, 12:39 am

zoloft can do that, and for me it took about 4-6 weeks after I ended up lowest possible dosage treatment (slowly ended!) to almost stop the twitches.
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Re: brand new here and seeking opinions

Postby Gwen28 on December 12th, 2013, 9:11 am

Thank you so much for your input. Yes I guess I just have to keep perusing this. i know that getting to the bottom of this is gonna take time and action. In the meantime... I'm gonna start journaling EVERYTHING, to see if there are certain triggers and so on. One thing is certain. Obsessing over this gets me no where and makes it worse. I have health anxiety, partly I'm sure, because I'm a nurse and I know a little about a lot of terrible things, and being around sick people all day eventually makes you believe that this is the norm. Lack of sleep also makes it all worse and I am a mom of 2 young children. Sometimes I sleep great and sometimes I do not.
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Re: brand new here and seeking opinions

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