Living with Chronic Condition

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beensuggested

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To all:I have had this condition for 2.5 years. It was horrible in the beginning. It started with pain in my legs, moved to the cold water sensation, weak and icky feelings in the legs and then the twitching exploded. I did my due diligence and researched all I could and naturally you know what I found. I had myself convinced that I was dying and not just dying but dying horribly. I saw my GP who ran labs, normal and my neuro who could find nothing clincal. Both are dear friends and colleagues and although they were not familiar with BFS they agreed that it could be the problem. I never got and EMG because my dear neuro friend didnot relish the idea of sticking me with needles - for results that were likely to show nothing based on his clinical exam. Now, I was happy with that because although I can give needles I myself am not impressed to be on the receiving end. So I found this site and met so many of you but special thanks to LisaLM, Basso, Withchy Twitchy, Chris Sewell, Twitchmebaby, and a few others I found my center. My dad gave me some lovely advice and I moved on with just twitching in the background. Fast forward to now. In February my dad passed away. My mom is depending on me for her sanity in dealing with her grief. As I have said elsewhere, my sister is an issue all her own, my husband is deployed in combat, I am running a house, a practice, acting as a single mom, running an educational foundation and two other associations. So to say the least there is one very small plate and it is heaped full. I started in April with the leg pains. Then came the twitching in the legs and the calves. Then came buzzing, pins and needles, thumpers - mostly in the legs and only occasionally elsewhere. Then came the rubbery legs and arms, the ratcheting tremors and general internal shakes and tremors as well as not feeling so stable on my legs. So I started back on the merry go round of panic convinced now of MS or PD or some unknown neuropathic disease yet to be dxed. Thank you Suzi, Basso and also Twitchmebaby who I keep in touch with for many words of wisdom and reassurance. I saw my GP friend who drew labs - normal and told me that my symptoms seemed likely to be related to waaaaay too much stress. You see you can only balance so much before the body let's you know that it can't take it all all the time. I saw my neuro today. He gave me good news and bad or at least not so good news. Now before all of you go running into the hills screaming - he said stress big tine...he also did a good clinical neuro exam and said NO MS, ALS, PLS, MD, PD or any debilitating neurological disease. However my balance was a tad off and my upper reflexes were somewhat dampened in comparison to my lower reflexes. I do have degeneration in my neck and decreased ROM. Lots of stiff necks. Too much tie studying in school for too many years, two car accidents, two chilcren which requires you to keep your head forward, seeing patients all day, too much paperwork AND although I am a little girl and am strong I never seem to know when to take a break. So his differential diagnosis is BFS and/or cervical stenosis /myelopathy made worse by stress. I shall have an MRI of my neck in a week and if my spine is pristine - doubt it as Ihave a prtty good idea of what it looks like then this is only a flare and should settle down. But he is leaning more toward the second - which by the way causes almost all of my symptoms. Again sometimes it is horses not unicorns when we hear hoofbeats. It is logical. If that is the case it may require surgery and all my symptoms may disapear or I may still wind up with this but get no worse. Either way. I am going to be fine.So after all of this...the moral of the story is...sometimes you need to be logical and it isn't always the most obscure diagnosis - sometimes it can be mechanical and structural and related to life. Sometimes it is just a scucky diagnosis and it will only stop you if you allow it but there will be flares and remissions and the will challenge you balance. How well you have learned is in the telling of how well you choose to accept what is and not dwell on what isn't.Take a lesson from me, those of you who kow me or have read my posts know I am not about to steer you wrong now.Be well, Smooches,Kit
 
Hey Kit, My little Godsend along w/ a couple otheres that no longer post here that I hold dear.... I am glad to see your still going strong as we all are. 14 months for me plus 2 years ago when it happened , wait 3 years ago when this first happened to me before remission... Your right , EXCEPT IT and move on. I went back to being a nurse and I was taking a job with a Neurologist and I decided may not be the best thing for me so I went to Internal Medicine w/ a WONDERFUL DOCTOR..might I add... I see people come in w/ ALL KINDS OF PROBLEMS, weakness, tingling, falling, slurred speech, yadah yadah..I see all these test ran and come back from expert and specialists and NEVER ONCE has it been ANYTHING but ANXIETY and or compressed disc etc. I had one possible ALS diagnosis whom in which even when I saw the chart I would gringe and want to just burn it. This guy DID have real issues. Atrophy right arm, rare fasciculations isolated to deltoid, fibs...etc. Couldn't lift 8 lbs over his head with the effected arm etc. I just knew this is ALS...well, after the mayo and seeing TOP NOTCH DOCS here in Alabama,..its a benign motor neuron disease. NOT BFS...Its actually under BENIGN MOTOR NEURON DISEASE! I was sooo relieved to see it wasn't ALS. However I just want people to note this man lost TWO INCHES IN HIS BICEPT TRICEPT within 3 months!! He did not feel fascics, his own words. "THE NEURO SHOWED ME FASCICULATIONS"... I said I Twitch..he said "noo not like a thump thump thump..he said my twitches look like worms are lightnening storm underneath my skin..constant it doesn't stop...!".HE's DEPRESSED but how thankful...HE doesn't have ALS.AGAIN just not our story- were sooo different...Lovely
 
Kit - I also often wonder about the symptoms and their relation to life circumstances. On one hand you see it - it makes sense that stress will take it toll and since most of us no longer have the stress of survival to deal with, how this translates in today's world...... It is strange that so many of us now have no substantial safety net (emotional or physical) - we usually don't have family groups living close together, and often a supportive community is missing - as this is how we, in the past, accomplished so much as a people.The attack of the bfs badgers came after rather than during a very stressful time for me (son in Iraq, mother with Alzheimer's in my care, full-time job, publishing responsibilities, etc.) and although I had some symptoms beforehand, after my mother's death, I got very ill and bcfs ballooned. Most of the stuff you read about here at once but with lots of pain due to ruptured discs. It has gotten much better but has taken years. A friend once told me that my body was demanding a long over-do rest by a partial system shut-down and I needed to listen.The recurrence of symptoms in places of injury is common for me also. So as you say, the areas of structural weakness seem to be the least resistant to staying 'well'. It was good to read your post as you seem to have gone full circle and have a tempered view. You have integrated what you know with what you feel so this makes your comments valuable to us (not just that you have knowledge about the human body but that you have also personal experience with this syndrome). However, for me it is still often just like the bump in the night, it is hard to feel comfortable with something you can't identify. I still wonder about those hoof beats when I can't see the beast.
 
Hi KitNice to hear from you. I wish I was able to help you and ease your load a bit, as you have helped so many here. Take care, Val
 
Hi Kit,It is great to see a posting from you. I find the cervical stenosis is interesting. I had a herniated disk at l5-s1 which I had operated on. Some would not have done this. The medical community is out on whether it really does any good. But I figured, like you do in our message, maybe by operating on it, it has not gotten any worse.Actually in my cause every year or so I would have a back pain flair-up. After the operation that has not occured.I also think that stress can cause a lot of problems. We can only push so far. I used to be a type A personality who was always on the run, always upset about something, etc. Now I think I am an A- :D) .I am 5 years in and doing better. As I read this I do not feel twitching in my calves, just in my left ankle. I also do not have total feeling in that ankle. It 'feels funny'.Anyway maybe if you can de-stress that might help you? It has helped me... I think.Nice to see a message from you.-43RichyThe43rd
 
Blessings, my sweet friend, kit. I echo the sentiments of my fellow "boardies." We have all come to respect you so immeasurably and it is wonderful to share in your fabulous news. Of course, it is no surprise that you had a clean exam. It just goes to show that even us vets can, on occasion, still succumb to fear and fretfulness. OMG, just last week, I scared myself silly about a symptom I was having, (I won't go into detail, because it had nothing to do with bfs, in fact, it was more like something that commonly happens to women as age and gravity prevail, lol.) Needless to say, in a milli-second, I nearly collapsed in my shower from outright FEAR. My thoughts went to the symptom, the differential diagnosis, (MS,) and I FREAKED the HECK out. I literally had to take myself out of the shower and crawl my naked self into the bedroom, sprawl out on my bed, and talk myself down from pure panic. In that moment, my limbs were utterly useless; unable to support my body-weight at ALL. It was a miracle that I didn't pass out. Needless to say, the weakness did nothing to convince me of my innate wellness. But, I finally managed to get a freaking grip once I talked back to the terrifying thoughts I was having, and thankfully, by the grace of God, was able to get myself back in the game within minutes. Honestly, I was shocked that my body physically deteriorated in such short order, but that is the nature of this condition. I've always said that BFS + Anxiety=BFS on STEROIDS. None of us are immune from the backlash of stress and anxiety. We already have a hyperexcitable nervous system. How much more sensitive and susceptible are we than people in the general population? Um. That would be a LOT.As Jro has shared lately, bfs is a GREAT excuse to do some major stress-reduction, pampering and spa'ing. We should all meet up somewhere, and have a spa weekend. :love: Oooh. I love that idea. Any joiners?Blessings, Sue
 
Oh Suz, I think a yearly class trip to a spa, lots of relaxation, massage, spoilage of ourselves, good company, good food, no whine but good wine:)) would be awesome! I am sorry to hear that you had a bout...there are some here who I have come to rely on in my own darkest hours and how terribly selfish to forget that no matter how evolved we become ...there are still those dark little nooks and crannies where the nasties hide just waiting to get a grip on us in our weak moments. I hope that your nasties pass quickly. I am weak today, tremory all over shaky rubbery panicky not so much twitchy but heck they are always there...the background music to the dance that is this condition. I of course today find myself this way because tomorrow I have the tests. I am just convinced that it shall prove to not be my spine but rather some awful condition as of yet diagnosed which when I am relegated to a wheelchair (of course I will be wearing beautiful and ridiculously high heels - if I don't have to stand and worry about the weak why not look good if I don't feel good :eek: :oops: :rolleyes: :LOL: :LOL: :LOL: ) Anyhoo...I am convinced that I shall finally be the one who proved EVERYONE wrong - from all of you lovely people to my family to all the docs who have examined me and are friends who are waaay more apt to take everything I say seriously and move heaven and earth to not see me suffer. Yes I shall be the ONE the SPECIAL ONE who can finally say....I told you so! Sorry for all of you others out there who have decided that this would be your claim to fame:) Hmmmm, sound familiar? So shall endeavor to bot ruin the rest of the day...get my panic under control and the dark nasties back from whence they came and suck it up. I shall have my tests tomorrow and live with whatevcer the results. Which I am pretty darn sure are goin gto show some degree of degeneration and which combined with the stress that is my life along with my mania along with the BFCS are giving me a run for my money as of late. So...lets all say it together just one time....I am ok, you are ok...we are all ok!! I do primise to give you all my results as well as my and my friends best medical opinions and then try to just be nice to myself. At least that is my plan:)Smooches,Kit
 
Kit,I will be thinking of you tomorrow and hoping for the best outcome possible. Just reading your post made me remember how common our experience is as humans. We are so fragile yet strong at the same time.Krackersones
 
OK, that sounds good, Kit, and just so that you won't ever get too worried again, perhaps we could threaten you with the bfs gauntlet. Yes, that's right. You will be made to walk the gauntlet in your high-heels while use switches on your twitches. :mad: We all know you are well, so tomorrow won't be a fact finding mission of your wellness, because that is already well established. :D) Can't wait to party, but I'm a bit p*ssed your making us wait so long. ;) Basso
 
I will keep you posted and Basso, m'luv, when you get to say "I told you so" to me tomorrow...and know that I will allow you to do just that....drinks are on me:))))Big smooches to all!Kit
 

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