Another experience

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Another experience

Postby KateBN on June 24th, 2013, 7:48 am

I think I have BFS. I'm not positive not having had it formally diagnosed, but I have a suspicion. I started out with prickles in my feet when I got out of bed in the mornings four months ago which morphed over the course of a few days to outright tingling. The tingling then spread to my hands, and became much more constant. I was concerned but not obsessively so. I had had this before several years ago. Then I took a guess that it was my horrendous posture causing the problem and began doing yoga to improve it. The tingling disappeared.

This time around, I decided I'd make an appointment with either my doctor or a chiropractor if it was still bothering me at the end of March. I had my first one with the chiropractor in early April and was diagnosed with upper cross syndrome. He prescribed some adjustments and massage therapy. The adjustments did nothing, but I have to say that the massage therapy has been helpful. Even so, the tingles continued. Then I began to obsess.

Always in the back of my mind was the what-if. What if it's something more? The thought of MS concerns me, but MS is manageable. It's the other what if that's always terrified me, the one called ALS. I managed to keep my fears in check that first time years ago. This time, however, I'm a first time mother to a two year old daughter. There's nothing like having a child in your more mature years to make you realize your own mortality. I panicked.

Panicking is never good. I questioned the wisdom of going to the chiropractor first instead of my family doctor. I questioned whether the upper cross syndrome could cause tingling in my hands AND my feet at the same time. I began to picture my future and the futures of my husband and daughter without me. The tingling spread to my scalp and lips. It grew almost constant. Then a feeling a weakness developed in my left shoulder, and over time, my foot and calf. I was horrified. The twitching started - not much, just here and there: I had myself in my grave before my daughter started kindergarten. The beginning of the end, and what a horrible end. My life was over.

I finally stumbled into a couple of online forums with people who had been living with tingling like mine for years, even decades. That's what brought me back down to earth. Overnight, my tingling subsided. It became less constant and the sense of weakness in my shoulder less noticeable. I could go hours and even days without thinking about it. In fact, there were times when I did think about it and there was nothing there to notice. I thought, maybe most of this is in my head. The obsessing was acting like a magnifying glass making everything so much bigger.

To make a long story short, I made an appointment with my family doctor who then referred me to a neurologist. After two months of waiting, my appointment is later today. The tingling and weakness have largely subsided. They're not very noticeable at all. This site, the information available, and reading about others' experiences have helped a lot.

Even so, I have that what-if haunting me in the back of my mind. I know that the course of my symptoms don't match those of ALS. ALS doesn't subside. It doesn't come and go. I know that, but well . . . what if? That irrational part of my mind won't let go no matter how hard the rational part of me tries to beat it into the ground. I can only think that I obsessed about this whole thing long enough - I built up such a horrific but convincing picture in my head of the doctor breaking the news of my certain demise that I can't give it up no matter how hard I try. I'm positive that today's appointment will be a confirmation that there's no terrible future awaiting me - at least not now and not from ALS - but what if . . . ?
Last edited by KateBN on July 4th, 2013, 10:57 am, edited 1 time in total.
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Re: Another experience

Postby TwitchyMark on June 27th, 2013, 2:20 pm

Hi Kate, I think it's all about desensitizing yourself to the symptoms and "un-linking" them from the what-ifs. What helps best is knowledge and time. And, as with BFS symptoms, everyone's journey back to relative serenity is unique and runs on its own schedule.

Mark
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Re: Another experience

Postby Aingealag on July 4th, 2013, 3:25 am

One of my first symptoms now that I look back were also tingles in my feet when I swung my feet out of the bed and stood up. I also noticed that my legs and arms would "fall asleep" way too easily. Few months after I started noticing this, the twitching started!

It sounds like BFS to me. What did the neuro say?

Cheers,

Wendy
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Re: Another experience

Postby KateBN on July 4th, 2013, 10:55 am

The neuro hasn't said much yet. She feels it's benign, but to be on the safe side she had me go in for an MRI last week and has scheduled me for an EMG in four weeks. She wants to rule out MS or anything else. No results on the MRI yet. I'll assume no news is good news or, at least, not life altering news.
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