BFS: Progression Over Time?

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BlueMan

Well-known member
Hello all. This is my first post, though I've been lurking for months. My question is simple: does BFS (or its analogous conditions) progress over time? From what I've read here and elsewhere, the symptoms/signs should be relatively stable over the long term, arising then fading due to a variety of factors. Some of my symptoms fit that pattern, but several do not. Since this started in Dec. 2000 I've had some symptoms get worse or occur more frequently. E.g.: my legs are weaker now, and often I go weeks or months walking with a shambling, shuffling gait, using a cane to avoid falling and injuring a foot or knee. So does this happen with BFS? Have any of you seen or personally experienced this kind of progression? The docs I've seen aren't sure what's going on, though a lot of possibilities, from myasthenia gravis to somatization disorders, have been ruled out. Thanks for reading.
 
Hi Aoi,A big welcome to you. It is always great to get new members here, it is a very friendly community of helpful people. In answer to your question, I really don't know!! Have you seen a neurologist? A shuffling gate can be indicative of other conditions, but I am not qualified to be more helpful. I get a slowed up feeling along with all my other symptoms which I interpreted as Parkinson's, I had tests but apparently I was wrong. A shuffling gate can be indicative of Parkinson's but a little knowledge like mine on neurological conditions can be a dangerous thing. If you can afford to see a movement disorder specialist, they may be able to throw more light on it for you. Would you describe your other symptoms. Perhaps we can look them up together.Regards Martin
 
Thanks for the welcome. To answer your questions, I've been seen by five neurologists, and PD, ALS, MS, and MD have been ruled out based on neuro exams and tests including MRIs, EMGs, EEGs, etc. My other symptoms include everything on the standard BFS/PNH list, plus tinnitus (due to ear infections as a child), diplopia (due possibly to a cranial nerve iv palsy, lazy eye, or side effect of clonazepam, the strabismus specialist I saw was uncertain), borderline thrombocytopenia (cause uncertain), and subclinical hypothyroidism (cause uncertain). I'm also very intolerant of sunlight, to the extent that being in the sun will give me a rash and make me feel nauseous, dizzy, and disoriented.Psychologists and a psychiatrist have ruled out a somatization/somatoform disorder. Neuro doesn't know what to think, and the physiatrists, rheumatologist, and internist I've seen are also stumped. My PCP thinks that BFS may be part of what's going on, but he suspects there's more to it. Hope that isn't too long or dull to read.
 
This stuff is so hard on people and so frustrating. You have done all that you would expect you would have to do to be more informed of your condition. Would you go and have a look at; and let me know what you think. I keep selling this site. I am not on the payroll !!! :D) Regards Martin
 
There are some labs in USA that specialize in testing for Lyme, I believe you can send blood even from Europe. However, it costs around around 1000... :whistle: thus I never did that but was tested by normal test and tested negative.... My doc told me that almost everybody test positive in these special tests since they take different standards.... I was bitten by a thick around 15 years ago and got brain inflammation from it ( meningitis?) I wonder if it would be possible to be ok ( symptoms free) for 12 years and than out of nowhere gets Lyme symptoms ?
 
Thanks again for the info on Lyme disease testing. For now my doc is running an ANA test. The platelet count just came back low, as usual, but not alarmingly so. From what I was understand I'd have to spend a lot of money to get a Lyme test run, and the results would be equivocal, especially since my history lacks what you'd expect to find in Lyme disease.
 

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