Thankful for This Site & Community

Hello all, firstly I would like to thank the creators and administrators of this site, it has been my comfort and saving light through all the dark days that I have experienced, (like everyone here), with this horrid and frustrating disease. I have just joined after a year of looking in on everyone.I would also like to thank all of the regular posters on this site who's optimisim, rational thoughs and advice have saved my sanity.Indubitably BFS is a rare and life changing disease, which started for me in Oct 2007 with a persistant twitch in my right bicep. Like most on here I googled it and badda bing ALS poped up to turn me into a jibbering reck. Fast forward to now and I have had all the symptoms many experience, incluiding twitching in my scalp inner ear, (most depressing), and an eyelid twitch which has now gone on for 4 months.I have had 3 neuro consultations which were useless as I new more than my consultant although she did do the mri and ecg that I requested, plus all blood tests I could think of. Theses as is common were all negative for anything so she said BFS.Ok so I have BFS and except that, however what I cant except is that there is no way to treat this illness and no reasonable explanation for why I have developed it. I have tried Clonazepam which did not seem to work although because I was affraid of withdrawl I nerver increased my does past 1mg per day.I am now on Tegratrol 200mg nocte, which I started on sunday and will let you know my results. I am now awaiting another neuro appointment with a specilaist in another city who may be able to advise me better. Like most of you all I want is a bit control over the symptoms this disease produces and a measure of control back over my life, Im sure many can relate to how BFS although benign can sap the enjoyment of life from you each day. Not to mention the disregard it recieves from everyone you tell about it. Like my neuro said eveyone twitches from time to time and thats the general reaction from family and friends. At least it used to be untill they realized that I in fact have twiched every day for near 2 years.I also Have a few questions if anyone could help?Has anyone tried botox for a hotspot? My G.p suggested that this was a reasonable idea that could produce significant relife and control over such symptoms I am going to suggest it for my eyelid to my new consultant. It is treatment of choice for focal dystonia and blephrospam.Does anyone know why BFS is different from Myoclonus, because Myoclonus is treated sucessfully in many people with some medications not often,(if ever) mentioned on this site.Thanks all for reading this I know its a tad long. May God help us find a cure soon. Blessing to all. x

That is what bothers me the most too that there is no treatment. I mean, allergies are benign but yet there are 100's of allergy medications. RLS is benign but there is meds for that. The list goes on & on. I don't understand why there is not more awareness of this. That is the part that really bothers me. You never see this condistion on any medical shows either. Very frustrating.

I totally agree Barbie, very frustrating, but remember there are a lot of meds out there that we can all try, who knows someone may get lucky and lead us to a treatment. I personally am going to try as many meds as I can relating to muscle spasm/seziures and see if they have an effect. It may be trial error, but I believe firmly that there is a cure for every disease on the planet, its just finding that cure. and again Im not totally impressed with the Diagnosis of BFS as I dont see the difference between it, and Myoclonus which is treatable to some degree. I dont know about you but it seems a lot of people on this site are content to go along with the traditional neuro response of live with it/ignor it rather than try treatments/meds. I am certainly going to try botox for my eyelid because it makes me want to cry at times its sooo very tiresome.Cheers x.

CAM1516,Thanks for joining and sharing your experience. Klonopin works some for me. I still twitch but can sleep and function. I limit it to 1 mg a day. I will be anxious to hear how Tegretol works for you. It is one I thought of trying. I think symptom relief is trial and error. The great thing about this board is if we continue to share our attempts at symptom relief maybe we can help each other. I also related to all the frustration you mentioned in your post.Krackersones

Welcome CAM. I enjoyed reading your summary of what's happened to you - it sounded so familiar! Simon

Thanks for your welcome Simon this site truly is a blessing and I believe one day we will get to the bottom of BFS and If it is God's will find a cure. Not that I would wish this illness on anyone, but what we need is some one ober famous to get BFS imagine Oprah . a cure within a week. ha ha. cheers.x

I guarantee if the drug companies thought they could make millions treating BFS they would have created oddles of drugs for it. Who ever heard of RLS until a few years ago? And when we were young did anyone take Allegra or Claritin or Zyrtec?Not enough demand - not enough BFSers to buy their product if they make it.

G'day CAM 1516Firstly, I agree with your comments about the Creators and Administrators of this site - it's very informativeI was diagnosed with Isaacs Syndrome / Neuromytonia you could also call it Peripheral Nerve HyperexcitabilityOn the subject of Botox - I have been treated with Injections of this in my neck every 3 months to help control the spasms caused by Fasciculations - the results have been very good and I would not hesitate recommending it to you. I also take Tegretol 400mg x 2 times per day in addition the Gabapentin1200mg x 3 times daily. I have had reasonable relief with that combination - although my liver function is slightly abnormal, however not sufficient to discontinue them.I also agree with your comments that many people just accept the traditional Neuro approach, live with it, ignore it etc. I would be in real trouble if I had accepted it. Many of the the symptoms posted here are very clearly consistent with Isaac Syndrome / Neuromytonia an Autoimmune Disease I cannot understand why these BFS Diagnosis has not been followed further by the treating Doctors. For the type of symptom discussed here there must be a cause.RicktSydney Australia

Rickt,I brought up Issacs to my neuro and he told me I didn't have that. Not sure if I should believe him or not but my only symptoms are bodywide twitching mostly in my legs. I don't know what to think anymore.Leslie

Leslie,The key is how bad the symptoms are effecting your life. If you seem functional or say you are, most neuros do not want to do much. This is probably the best approach but it does keep the field from realizing the actual frequency of what might be the same disorder.Krackersones