My BFS Story: A Journey Begins

[rosesarahrosepinkr]

Hi everyoneAfter a few months of reading I thought it was time to post my own story. Finding this site has changed my life.I have been fasiculating since sep. 2005. I will try to make a long story short. At the present I think I have many of the problems of bfs. Fasiculations that are 24/7 in calves and feet and then constantly running around the rest of my body. periods with pain and soreness and the fear of ALS. Symptoms gets worse with exersise and coffee. I had an MR scan and lumpar puncture ad Creatin lecels done plus a lot of other blood tests done all negative. I didn't have the needle emg done. My neuro says that I have fasiculations but that they are normal and I should not have pain since it is not connected to Fasiculations. I confronted him with bfs, but he doesn't believe in syndroms. This is Denmark and I think the neuros are a bit behind. My story started a bit different than most of the stories I read on this board, please if anyone had a similar onset it would be nice to know. It all started with paræstesier( pins and needles, elctric chock feeling, numbness in toes and fingers, sleepiness) I also had days where my legs were so heavy and warm(i didn't have a fever) I couldn't walk. On top of this, which all started 28 of august 2005, my heart would beat really hard everytime I moved, just sitting upright my heart behaved like I was doing a marathon. I later talked to a psykiatrist who confirmed, what I knew myself that this was not panick attachs. Ten days into this my calves started twiching and haven't stopped since. I also got diarria and lost 10 kilos in about a month, and got very dizzy and was hospitalized for a week. The conclusion of it all is that I proberbly had a stomach infection which trigged my nervous system. The sensory problem was only present for about a month and only the fasiculations persisted. I haven't had sensory problems since, although I have the buzzing feeling especially in my toes all the time. After having had a fever a few times this year some mycoplasma infection in the lungs my pain has become like the feeling of small cramps and the fasiculations has spread to the cheeks and very bad in the hands. Actually my cheeks gets so tired sometimes when I am social that I have to shut up(proberbly a good thing ). It feels as if I have some kind of temporary damage of the muscles , is that possible? The first eight months after it all started I was in bed crying the hole time, my body was really crazy. So as you can hear I had a very "acute" onset and I don't think I've seen this kind of story on the board. If I don't have BFS I don't know what it can be, but it is not normal. I don't consider myself hypochondric and I used to be very active and healthy, but doing sports now makes me feel sick for days and increases the twiching. After finding this board I am not so concerned about A.. as I used to. So thank you for that. I am a bit worried though since I've lost weight again so that everyone is mentioning it( I am way to skinny) and I can't think why. Also I began having intense pain under my feet and toes in the autum at the same time as the fasiculatio s became bad in that area. Later I have been diagnosed with the front of the foot falling down so that you walk on the bone. The reason for this is weak muscles or senes. Not really the thing one wants to happen when one is a bit concerned about that in the first place. I have to put something special in my shoes. Anyway do you think I could have BFS. The psykiatrisk cleared me for mental problems. By the way I am 28 and woman. Sorry for the spelling english is not my mother language )

 

[Crazybob123]

Hi, sorry to break it to you but you are healthy and worried about having ALS and thus by definition you are a hypochondriac whether or not you chose to believe that. Anyway, this is far better than being ill. Feet and calve twitching are the most common form and the onset can be just the same as you described. The weight loss is most likely more to do with worry than anything else and your weakness very much sounds like "percived weakness".I read this once before on here and it made sense. If a car came at you at 5omph, could you jump out of the way or would you be routed to the spot? I would suggest that you would move pretty quickly If the strength thing bothers you, do some light weigts and build them up over time to give you some confidence in your body. Alot of people go the other way as if to almost confirm their illness, break that pattern and use this as an opportunity to get strong and fit.You are well., but you do sound like you have a bit of anxiety.Rob

 

[DonJose]

Danish, have you had your thyroid checked? Some of your symtoms sound like hyperthyroid. The heart palps and the weightloss for sure. Twitching is another symptom of thyroid issues. Just wondering as I have hashimotos and my twitching began last September when I went hyper. Muscle weakness/fatigue is also a symptom. Sorry to hear you had such a sudden onset. Mine was pretty sudden too with my twitches being accompanied by heart palps, sweating, trembling etc. Most of my other thyroid symptoms have resolved, but I am still left with the dang twitches.Linda

 

[rosesarahrosepinkr]

Hi againThank you for answering ) Felt very alone with this for the past 2.5 years. The heart thing was only in the "acute" fase I didn't have any problems with this since. Actually I just joined a jim to try to build muscels again, I USED TO WORK OUT ALOT. I don't worry about ... that much anymore mostly when my symptoms chance, something I see is very commen to do on this this site. I think my problem with ... was that my neuro didn't see my fasc.(before last week, new neuro) and that he told me I had a mental problem he didn't at all recognize any physical problem bc. the tests were negative. I didn't get the bfs. diagnoze and I didn't know about it. So I was especially the first six months very affraid bc. I knew that the problem were not mental. Therefore I went to see a psychiatrist who totally ruled out mental problems as the underlying course( he saw the fasc.) I was tested with thyroid 2.5 years ago, also no problems. The problem back then were diarria and the weightloss where therefore understandable, now it could be bc. of breastfeeding, I put weight on in between those periods. I don't think it is weird to be anxious when your body from one day to another behaves so crazy, that you can't function. I do agree we have to stop worrying about ... , but I do think it is understandable in the beginning. I so wish my neuro had explained me about the difference and given me the bfs. diagnoze it would have saved me for a lot of trouble including going on the internet.I don't think anxiety helps twitching, but I don't think it's the reason for the twitching and the pain if you have them 24/7. I think you can have a bit more fasc. in periods of stress, but that is not the same as bfs. My neuro distictised between tics and fasiculations. I think it is wise to do, since everyone has tics know and again, but that is not the same as having bfs. (is this correcly understood?) Reading about bfs on this site and on wikipedia convinced me that it is a neurological disorder and not only a mental one. Saying this anxiety seems to be a big part of the condition for most people here including myself, but it came with the condition, so what came first the chicken or the egg Anyway do you think what I have is bfs :

 

[DonJose]

p.s sorry to all for screwing up the quote feature in my last post. I am new at this and technologically challenged LInda

 

[paulrational]

Only my opinion but i can agree with your Neuro this is caused by something but it aint ALS.An als specialist i saw 3 years ago reckoned my constant fascics in my calves and feet are caused by salmonella infection i once had .

 

[rosesarahrosepinkr]

Hi PaulThats interesting I never found out what bacteria I had since all the tests were taken 1.5 months after it all started, I have thought it could have been samonella. It took four months with undigested food, no pain and then it went away. Anyway I am not the only one with gastro problem previously to twitching, nice to know, thanksxxx

 

[DonJose]

Not to be difficult, but I have had no gastro problems, or infections, or bacteria prior to my twitching. I really don't think it is related. I would believe that dehydration due to the gastric problem could be relevant. I think an electrolyte imbalance could trigger this thing.Linda

 

[rosesarahrosepinkr]

I agreeI think we have the symptoms in common, the causes can be diffirent. I also had a bad flu six months before and an eye operation one year before and an attach by bies one year before and took alot of brenadryl-so who knows. Maybe it can be more than one thing that adds together and becomes too much for the body.Just got back from the gym feels fantastic )

 

[hCapitalize]

Well for me I think BFS will be whatever is left after all the other causes have been factored out.For example a proportion of my muscle twitches, pain and spasms will be caused by age related arthritic deteriorations in joints and various neuropathies. There will be psychological and pharmaceutical exacerbations, (too much anxiety and too much caffeine) but presuming I don't have a global NMD or significant lesions or tumours in my brain however caused, what is left wil probably be a biochemical propensity towards random activity or exaggerated reaction in my muscular fibres or peripheral nerve connections which has either always existed or has been at the very least latent.