BFS Suspected: Opinions Requested

rdbashir12

New member
Hello everyone. My name is Matt, 32 years old, and I think that I most likely have BFS. I can be a bit long-winded when speaking(or typing), so bear with me. I have read all of the stickies here, but still would like to hear the opinions of this community on a few issues.First of all, I have never been to a neurologist. I have battled my entire life with severe anxiety and an obsessive personality disorder which, when combined, cause a preoccupation with my body and health; a lifelong history of hypochondria. This, in turn, causes my doctors to be very skeptical of symptoms which may be open to my own subjective interpretation and unconscious or psychosomatic biases. I understand this, and I don't begrudge them their doubts. However, I believe that the reason I haven't yet had the proper tests done(EMG, etc.), is due entirely to my mental health history in spite of some of the more objective symptoms I am presenting with.Roughly two years ago, I went to the ER with a large blister patch on my back and a strange pain confined to the left side of my body. Being the medical wonk that I am, I identified this immediately as shingles and knew that I needed to start on antivirals ASAP. Finally my health anxiety had paid off, I had correctly diagnosed the problem!(even though the shingles probably erupted due to my anxiety and the stress which follows) I was started on medication(Acyclovir) and given a follow up with my doctor. After a week or two of walking around in my underwear with lymph nodes the size of carrots, I got better. Everything seemed OK, but little things started to go wrong 4 or 5 months down the road. I had always had twitches throughout my body, but they became more frequent and intense. I also noticed a tremor in my left hand. I didn't think too much of this, until I noticed one day while sitting at my computer with my head resting on my knee(something I have done my entire life), that I couldn't open my lips without an incredible tremor taking over my chin. I then made a terrible mistake: I Googled these symptoms. I'm sure you know what I found; a veritable buffet of boogiemen. ALS, MS, Parkinson's . . . the list goes on.Since that time, I have developed an "all over" tremor that causes me to shake quite a bit whenever I exert force against anything. My hands both tremor when I extend my fingers, the left moreso than the right. These tremors become very pronounced after taking a hot bath or shower, to the point where I can't hold a toothbrush. This also happens when I exercise. I am a runner, and I average about 21 miles/week. Once I hit the 2 mile mark on a run the loss of coordination in my left hand is almost funny, I can't even touch a finger to my thumb.I twitch madly all over my body. My thighs, my back and shoulders, and strangely(or at least I think it is strange) my lips and the facial muscles around my nose! I have a spot below the pinky on both hands that feels like it is "buzzing" constantly, like a super fast fasciculation which I can't see, but there all the same. I often feel an internal shaking when I am in a chair or in bed, like a washing machine is running out of balance nearby.Finally, the new manifestation which caused me to create this account and post here. Nine days ago I developed what you call a "hot spot". The thenar muscle on my right hand, more specifically the topmost muscle(the one closest to the fingers) of the thenar cluster in the palm of my hand, started to twitch in rapid bursts. It has not stopped since! These twitches even persist through the night, flaring up a lot when I switch positions in bed. I have never had a twitch that doesn't stop, and this is abjectly terrifying to me. I am dreading ALS/MS, even though I haven't yet experienced any loss of strength. I can honestly say that I have never been this scared before. It is consuming every minute of my life. I understand how irrational this is, considering that were I to actually have some terrible illness such as the ones that I have mentioned above, it would do me no good to dwell on it. My doctors have given me a CT, and tested all of my electrolytes and thyroid. All came back normal. I believe that I should have an EMG and a MRI/spinal as well, but sadly I am a medicaid patient and my doctors don't want to do these more expensive tests given my history of anxiety muddying the waters, so to speak.I am at a loss for what to do next.Do my symptoms line up with your experiences with BFS? Should I go back to my doctors, relentlessly, until I get these tests? How do you take your mind off of a hot spot that is so very noticeable, e.g. on the palm of the hand!?If you made it this far, I thank you for listening to what was probably a tiresomely verbose introduction.
 
Im probably not the best placed person on here to start replying, but the simple answer to the question you asked in the post title, is yes. Absolutely.There are many knowledgeable and helpful members who i am sure will reply, ive noticed Raindog is online... Im sure he'll reassure you further.For what its worth, you'll be fine.Dave.
 
Matt,The doctors aren't skipping the tests because of your anxiety history. It's because they don't feel they are needed. That's really a good thing! As you know, these twitching symptoms can be really weird, and can provoke anxiety even in people without a history of it. I recall watching my fingers move on their own and even interfere with my typing. I had hotspots in all the muscles that move fingers (from the forearm) as well as the small muscles in the hand. Big ones, little ones, thumpers, and small rippling twitches. For years. Every muscle in my body. They are all caused by the same thing, and no one kind of BFS twitch is worse than another. You must believe that, and remind yourself when observing them. Read BFS In A NutShell when when you feel like freaking out. Everything you describe including the buzzing, tremors, and hot spots have been experienced by members of this site.Avoid reading posts by other people who are freaking out, because well-meaning or not, they tend to propagate the anxiety. Stop googling and listen to your doctors. You will be fine.Cheers,Bill
 
Dotson, you were correct in your diagnosis of shingles and your indeed correct about the diagnosis of BFS. If i could give you some advice it would be ease up on the google looking up symptoms and learning about other diseases you dont have. Instead get an outdoor hobby/sport that involves being around other people or mates who make you smile and laugh.
 
Sounds like Bfs! However you also have a lot of anxiety too and i would talk to your doctor and find a good psychologist to help you as well. I'm curious at your age how are u on medicaid?
 
I have been seeing psychologists and psychiatrists my entire life. I am actually on SSI due to my being diagnosed with OCD when I was in the Marines, but I believe(and so do my current doctors), that I really only suffer with severe anxiety and an obsessive personality disorder; not primary OCD. Medicaid comes with the SSI. My next appointment with the local behavioral health dept. is this Friday.Despite this, the BFS(or whatever it is) symptoms aren't normal at all with respect to my hypochondria. I always felt like my throat was closing, had panic attacks, felt compelled to repeat phrases or clear my throat thousands of times; it never caused twitching or tremors. I'm sure that my anxiety can certainly make my shaking and twitching worse or more notable, due to hypervigilance, but it cannot create the twitch itself, of the tremors I feel when I am very calm and at rest.
 
Nobody seems to have tied the two together here. Shingles / herpes lives in the nerves. Lives in the spine. And there are literally thousands of reports from people online with both herpes and shingles screaming about all these BFS like symptoms. If I had a full blown shingles (or herpes) outbreak associated with the appearance of these symptoms, it would be a solved mystery in my eyes. How long were you on Acyclovir? Did you stop? Have you tried starting again when things kick into gear?
 

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