Hello

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Hello

Postby TwitchyMark on May 15th, 2013, 11:58 am

I reposted this here as I got very few responses in the support group even with quite a few views.

Hi, my name is Mark and I am in roughly my 9th month of twitching and other symptoms. 44 years old. I must admit that I avoided coming to this community til now due to the discussions about ALS. But I am happy I am finally able to exorcize that demon and have become informed about the disease. That was a big hurdle since even a picture of Lou Gehrig could set me off. My docs were not very skilled in allaying my fears (PC and Neuro). They did the normal ruling out with all the blood tests and brain and neck MRI's, arm and leg EMG's etc..., but they would never come out and tell me I didn't have the big one. And I was too scared then to bring it up. The closest I came was to ask if they could rule out motor neuron disease due to my symptoms being transient. The neurologist pretty much said no, they couldn't rule that out. Not helpful. Yes, I knew MS symptoms can come and go. She must have known my biggest fear was ALS, yet I feel she left me hanging. My next appointment is in mid June.

I have yet to be diagnosed with BFS, but the onset of my roller coaster ride was late last summer seemingly out of the blue with oropharyngeal dysphagia. Shortly following the dysphagia, the advancing twitching, trembling fingers, fatigue, RLS, exercise intolerance, cramping in my right hand, weird aching in my arms and right leg, a feeling of fullness in the left side of my head, swollen lymph nodes, neck stiffness, tinnitus (tapping) in my left ear, numbness in the left side of my face and tongue, cold extremities, heart palpitations, spasticity, hyper-reflexia and a host of other symptoms seemed to come like an avalanche. I was racking my brain initially thinking a vitamin deficiency, poisoning or thyroid disease. An episode where my right leg went dead culminated with a panic attack (my first ever) and an ER visit. I had first begun to noticed trouble walking around that time. There was no obvious reason why it would seem to fall asleep like that. I later determined part of my symptoms may have been the result of degenerative disc disease in my neck and low back. Myelopathy? That's all still up in the air too.

But most sinister was the dysphagia. My swallowing mechanism would seem to get uncoordinated and just shut down mid swallow at the top of my throat. (Luckily, I successfully insulated myself from much info about bulbar onset). It progressed to the point that I resorted to a liquid (ensure) and soft food diet. This lasted for 3 months. It then went completely away for 2 or 3 weeks but returned worse than ever in February and then subsided again. My last incidence of complete shutdown was in early March I think. It helped me to realize during the 2nd bout that I wasn't going to choke as long as I was careful and held the food in my throat for awhile. It would eventually ease up and I could finish swallowing. Although far better now, I still have times where I have to be very deliberate with eating/swallowing. One thing I did notice from the beginning is that I would be ok in the morning but have trouble as the day progressed. I often felt as if my chewing and swallowing muscles became tired with use. As a result, the video swallow study I had done (in the a.m.) came back good. Myesthenia gravis is kind of on my radar although I don't fit the normal profile of sex and age.

I could go on and on with my story as I'm sure most here can relate. I am worlds away from wreck I was this past winter. I can even see the bright side of the dysphagia in that it forced me to slow down, appreciate my food and eat smaller portions. I am 20 lbs lighter since it all started. But in the back of my mind I am sort of awaiting the symptoms to rear their ugly head again, especially the swallowing trouble. Anyway, I guess I'd just like some feedback on what I can expect from here. I'm hopeful for a complete recovery from all this but have learned here that we can suffer for years and years (if indeed I do have BFS). I am unemployed since July 2011 due to a work related low back injury and this neurological mess has kept me from getting a career change going and my life back on track.

Thanks and I look forward to any input and the chance to help others.
Mark
TwitchyMark
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Re: Hello

Postby Nicko on May 15th, 2013, 2:57 pm

Hi Mark,

I was diagnosed with BFS in 1991. Then my main symptoms were muscle twitching, multiple sites and virtually 24/7, muscle fatigue, cramp like feelings particularly in my feet and exercise intolerance which really affected my thigh muscles. I have had weakness in my legs, arms, throat. Tinnitus is bad, shower fans just seem to be operating at the frequency that sets off clicking in my ears which is just awful. I have had inflamed lymph nodes in my neck, headaches and skin rashes. My throat got really bad and I was having problems swallowing. I was later diagnised with a pharyngeal pouch caused by my swallowing reflex being out if sync. So overall I can relate to how you feel.

However, sInce then I have learnt to live with the condition going through good and bad periods. The bad periods were often linked to stress or anything else that lowered or challenged my immune system. Over the years I have at times become almost fixated on finding answers for my BFS and worried about whether I had got something really serious.

I joined this group as I was going through a bad period, my BFS had flared up and I was experiencing new symptoms (tremor on waking). My Neurologist told me in 1991 to come back if my symptoms changed. So I went back, got new bloods, EMG etc and was told that the BFS diagnosis still stands. Clearly I am glad that it is not something more serious, but I wondered when I came out if I really needed to go back. I realised that it was still my search for answers. So my advice, for what is worth, is live your life to the full, taking each day as it comes. You may be lucky and your BFS will eventually go but if not then you can still have an enjoyable and active life and accept that your BFS symptoms might come and go.

If I look at my good periods then the key has been a drive to maintain a positive mental approach. Mediation has helped me address the constant thoughts about BFS and I have also got a great deal of help from books like Bodymind Communication and the Path to Self-Healing - An Exploration by Bernie Siegel.

Good luck
Regards

Nicko
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Re: Hello

Postby wimpy39jen on May 15th, 2013, 4:58 pm

Hi there. I think I replied to one of your posts already, but wanted to tell you some additional things. I also have a neck tightening type of feeling, constant twitching that is spreading, hand and leg tremors and buzzing vibration type of sensations. I am worried sick it is something serious. I have not had any formal work up, just a doctor listen to my symptoms and tell me it was all anxiety and also a neuro therapist who is going to do my biofeedback tell me the same. I kinda wish I had a clean EMG although I bet I would still worry about that horrid neuro disease that is on most twitching people's minds even with a clean MRI or EMG. I have also had trouble swallowing and muscle spasms. Some of these symptoms come and go and when I try not to think about them like my neck being tight or the swallowing they seem to disappear for a time. The tremors are really scary as is the twitching and they do not come and go. I also have lots of other weird sensations including also lots of muscle aches. I hope more people respond to your post and give you some peace of mind. I know myself it is hard to move past all of these symptoms so please do not feel like you are alone :D !!
Jennifer
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Re: Hello

Postby TwitchyMark on May 17th, 2013, 11:32 am

Hi Nicko, thanks for your advice and the book recommendations.

After over 8 months of this I am very much over the worst of it. My main problem now is I am unemployed and I was in the middle of a career change (or trying to figure one out) when all this started. It has really killed my spirit and confidence for returning to school and forging a job search in the meantime. The swallowing and eating disruption I had pretty much put my life at a standstill on its own. I still don't know why it happened and do worry it will come back. I still don't enjoy meals the way I used to. And I can honestly say there was no huge stressful event or anxiety that precipitated it. I've had so many more stressful times in my life (terrible job, job losses, bad relationship) and never an issue other than maybe the normal physiological response everyone gets. I was eating so well, getting plenty of exercise and was probably in my best shape in 25 years. Maybe it is some underlying, low level stress that goes on for years and has a delayed reaction on the body causing autonomic and neurological dysfunction. Maybe a manifestation of a midlife crisis? I guess I need to come to grips that I may never really know the answer.

Again, thank you, and I will check out those books.

Mark
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Re: Hello

Postby TwitchyMark on May 17th, 2013, 12:16 pm

Hi Jen,

Thanks so much. I can relate strongly to your fear and worry. And, yes, clean tests don't eliminate all the apprehension. But they do help. I used to avoid all talk and info about the "dreaded disease" as best I could. At one point I would have been thankful for an MS or cancer diagnosis just to know it wasn't "that". I think that was a mistake on my part to bury my head in the sand because, in this case especially, knowledge is power. The more I read and desensitize myself to the object of my fear, the more I realize that I am no more likely to get MND than those who don't twitch all over. I know there is a problem at my neuro-muscular juncture that is causing some very annoying symptoms. In our case, the nerves are so hyper sensitive or over active that the symptoms are much more evident and plentiful. I am happy to say I may soon start reading a book I have hidden away for months... Tuesdays With Morrie by Mitch Albom. It is about an elderly man dying of... you guessed it.

That said, even though I have come far in these 8+ months, I still have symptoms recurring that bring anxiety. A couple days ago I started to feel cramping again in my hands, left in particular. It comes on in the evening (so many of these things seem to do that) and it makes it nearly impossible to type on the keyboard. It is real, it is debilitating to an extent and it does scare me because, in the back of my mind, I fear it is some kind of onset of distal weakness. My mind says even *clinical* weakness must come on with a *feeling*. But I KNOW I had the cramping and weak feeling before in my hands and it went away. my hands feel pretty normal now. I can do more pushups now than I could months ago. I am gaining muscle mass, not atrophying. I am stronger. But my mind sometimes discounts all those facts never-the-less. Maybe I just have a "what if" prone mind. I am right brained and open minded. Maybe it is my downfall in this case. lol!

Anyway, thanks again Jen. Have a great day!
Mark
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Re: Hello

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