beensuggested
Well-known member
Got a phone call from my friend and colleague who is also my neuro (yes it is kind of nice that I get a phone call 
) and the results of the MRI......degeneratice changes in my neck - no disc herniations, no chord compression but a seriously revesed lordotic curve, which in layman's terms means - increased degeneration and increased neck pain with decreased ranges of motion. The low back didn't look too bad. I have yet to look at my own scans and likely will when I have a moment. So....what does that tell me? It tells me that my recent flare was just that...a recent flare. My alteration in reflexes...well sometimes that can happen and is likely due more to the revrsed curvature in my neck and taut muscles than anything insidious. The weakness in my legs...aaah more of the same. I try to get an examination on a yearly basis just to keep a good log of where I am at. So my neuro's final thoughts for me....too much stress and BFS combined with some hereditary benign essential tremors. He told me to call him if I have any worsening symptoms or any new ones...and to keep wearing my high heels
So Yay!!!! So what have we learned...that even oldtimers can have flares. That even when we think we have it under control, sometimes we dont. That increased stress from other areas in our life can have a profound effect on our overall well being. That this condition is really benign and annoying and benign. That I am not dying anytime soon, at least not from this and I need to put this right back in the box it was in. Now my tough love for all of you...well not all of you but for some of you. Those of you who can not accept this diagnosis, those of you who refuse to believe that this is benign, those of you who insist on interpreting medical results and testing to suit your anxieties, those of you who are literally halting your life to obsess over this or rather what YOU beleive this to be. If you twitch...anywhere whether it is occasional or maddeningly constant it is BFS. If you twitch in fine little buzzing twitches, or you vibrate or you hum or you thump...it is BFS. If you think you may not be able to walk or run or exercise or lift or any physical activity but yet you can...it is BFS. If your muscles are achey, if they feel crampy or your legs or arms feel weak and fatigued but yet you still have your strength...it is BFS. If you have some tremors or you twitch enough to move a finger...it is BFS. If you have had a clinical exam and your doctor has told you it is BFS...it is BFS. If he/she hasnt called it BFS but has said it is benign...it is BFS. If you have had a MRIs' and there is no placquing or metastatic disease or aneurysms or tumors or sclerotic areas....then it means that there are no dread disease processes going on. If you have had an EMG or multiple EMGs, even if there were some fasics or no fasics or it made noise or it didn't or you saw twitches and they didn't show up or even if they did if the EMG results showed no issues that you were informed of - specifically ALS then that means that you have BFS not ALS. If your lab results were normal even if you had a slightly elevated ANA or CPK...it is BFS. Boys and girls...it is time to understand that you are well. No matter how much you want to not accept the simple does not make it any less so. Please for you sakes...you need to accept what is. I know the anxiety with this condition but you need to move on and accept what it is and then do what you can to put it in it's place. If it is meds, then educate yourself, talk to your doc and take your med. If it is therapy then please, do it. There is so much wasted energy worrying and analysing and questioning. That is fine for someone who has not seen a doc but for those you you who have or have gone mutliple times you need to figure out why YOU can't accept what you have been told. Remember when you hear hoofbeats, it is usually horses very rarely is it zebras and never is it unicorns.Be wellKit
) and the results of the MRI......degeneratice changes in my neck - no disc herniations, no chord compression but a seriously revesed lordotic curve, which in layman's terms means - increased degeneration and increased neck pain with decreased ranges of motion. The low back didn't look too bad. I have yet to look at my own scans and likely will when I have a moment. So....what does that tell me? It tells me that my recent flare was just that...a recent flare. My alteration in reflexes...well sometimes that can happen and is likely due more to the revrsed curvature in my neck and taut muscles than anything insidious. The weakness in my legs...aaah more of the same. I try to get an examination on a yearly basis just to keep a good log of where I am at. So my neuro's final thoughts for me....too much stress and BFS combined with some hereditary benign essential tremors. He told me to call him if I have any worsening symptoms or any new ones...and to keep wearing my high heels So Yay!!!! So what have we learned...that even oldtimers can have flares. That even when we think we have it under control, sometimes we dont. That increased stress from other areas in our life can have a profound effect on our overall well being. That this condition is really benign and annoying and benign. That I am not dying anytime soon, at least not from this and I need to put this right back in the box it was in. Now my tough love for all of you...well not all of you but for some of you. Those of you who can not accept this diagnosis, those of you who refuse to believe that this is benign, those of you who insist on interpreting medical results and testing to suit your anxieties, those of you who are literally halting your life to obsess over this or rather what YOU beleive this to be. If you twitch...anywhere whether it is occasional or maddeningly constant it is BFS. If you twitch in fine little buzzing twitches, or you vibrate or you hum or you thump...it is BFS. If you think you may not be able to walk or run or exercise or lift or any physical activity but yet you can...it is BFS. If your muscles are achey, if they feel crampy or your legs or arms feel weak and fatigued but yet you still have your strength...it is BFS. If you have some tremors or you twitch enough to move a finger...it is BFS. If you have had a clinical exam and your doctor has told you it is BFS...it is BFS. If he/she hasnt called it BFS but has said it is benign...it is BFS. If you have had a MRIs' and there is no placquing or metastatic disease or aneurysms or tumors or sclerotic areas....then it means that there are no dread disease processes going on. If you have had an EMG or multiple EMGs, even if there were some fasics or no fasics or it made noise or it didn't or you saw twitches and they didn't show up or even if they did if the EMG results showed no issues that you were informed of - specifically ALS then that means that you have BFS not ALS. If your lab results were normal even if you had a slightly elevated ANA or CPK...it is BFS. Boys and girls...it is time to understand that you are well. No matter how much you want to not accept the simple does not make it any less so. Please for you sakes...you need to accept what is. I know the anxiety with this condition but you need to move on and accept what it is and then do what you can to put it in it's place. If it is meds, then educate yourself, talk to your doc and take your med. If it is therapy then please, do it. There is so much wasted energy worrying and analysing and questioning. That is fine for someone who has not seen a doc but for those you you who have or have gone mutliple times you need to figure out why YOU can't accept what you have been told. Remember when you hear hoofbeats, it is usually horses very rarely is it zebras and never is it unicorns.Be wellKit
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and/orB. Flares do come and go, while they are here they feel like they will never clear up but like everything else things do settle.If I want to be painfully honest...I think it was a combo of A and B. Big happy twitchy smooches!!! (Yes Suz, I think that we get Bill, GaryM and you ristinaL91 and Basso and some of the others and party!!! Woohoo!)Kit
