BFSer Experiencing New Symptoms

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PandoraPhoenix

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I would appreciate any other bfsers sharing symptoms other than just twitching, buzzing, or sensory issues.I have had constant heavy, subclinically weak legs with stiffness and fatigue and loss of muscle tone for 17-18 months. NO DAYS OFF! Anyone else?I was recently given a clear clinical exam and a clean"expanded emg" at Cleveland Clinic (one fasic seen in foot muscle).Thenars ache, seem to be losing muscle. Calves blasted with constant weakness. Feet feel so stiff they could burst open. Seems to just be getting worse.I appreciate the past help I've received here and would appreciate hearing from others with similar . symptoms.
 
Hi,not being a great expert, however I may only admit that if you passed clinical exams (were muscle strength should also be checked if you have complains), then it highly probably that your weakness is still perceived.I have percieved weakness too, I'd say it is now my prevailing symptom (along with GERD and crampies which seem to be an alternating guest stars in my own BFS circus), that is why I'm responding, however I woudl say my PV has good days and bad days. And I am only on 7th month of BFS.I feel myself uncomfortable if I have to walk over 1 - 1.5 km per day and my hands are always more or less sore (but I am typing 10 hours a day, so there is a reason for that). and some days I feel that my cup or teamaker is much heavier... it is not so deep as yours, but it never relieves at all and at least several times a day I feel that my muscles are not those I was used to have...For thenar muscle it is quite easy to make wrong assessment of the tissue amount, unless you make a series of photos in the same position and lighting once a month or so. I do not know if you have any weight loss during those heavy 18 month - if so, thenars might be just more slender due to that. Additionally, noticeable tissue loss usually occurs when the muscle is already not doing its job for quite a while (like after being in a cast). If despite on pain and stiffness you still can move your thumbs to do daily hand works, than this should not be what is called atrophy. The most often issue of thenar atrophy is with progressed carpal syndrome, but it occurs only when the grip is already badly lost and the nerve is quite damaged, and usually is accompanied with the sign called 'monkey hand' - when the person could not move the thumb aside anf the whole hand looks rather like monkey's with the thumb pressed close to index finger or even being underneath of it. Since you have clean exams, you might be quite sure you do not have that sign because neuros know it very well and it is very well noticeable.Anyway, clean EMG (single fascis is usually not indicative for anything sisnister), clean exam and 18 month of symptoms without getting clinical damage, and non-focal (generalised) nature of complains still might be in favor of at least not malignant condition (however exhausting and unpleasant). Have your docs in Cleveland suggested any therapy for you? Any diagnose other than BFS/BCFS? Any further tests?Please also remember that having no releief for a long time causes certain pressure on you, and this pressure might be a part of cirlce and lead to symptom worsening. There was recently a post called Vasoconstriction and BFS, where on of our colleagues shares the idea that similarly to what stress makes to cardio muslce might happen to other muscles of our body, i.e., prolonged vasoconstriction, subsequent malnutrition, loss of power, fatigue etc. might still be a result of adverse stress effect.regardsYulia
 
I have had this so bad, if you search for my 126 symptoms of BFS thread. I have had 2 weeks of intense physio therapy and now spend daily about an hour on muscle relaxation, breathing meditation and physio therapy on it. I am still having relapses e.g. from infections though,and a 2-3 day break of my exercises will make my BFS come back -. My legs were in such a bad shape that they got me a wheelchair to my room in hospital because I could hardly walk and my whole gait was so screwed up thyt they thought I would not be able to walk there! But NO clinical weakness and clean EMG, bloodwork, spinal taps, MRIs...all clear. They even did them twice because they could not believe that this could be normal. AfterI was totaly cleared after 2 weeks in hospital they gave me a pack of Zoloft....they did not know about BFS( the guy who did my EMG had heard about it, but only the twitching, not the other stuff that comes along)
 
Thanks for your responses so far....It's the constant symptoms that are most troubling.But no fibs or psws on any of several emgs.Still no clinical weakness or abnormal reflexes.I have actually gained weight while thinning out in hands and lower legs and feet.The calves are the worst but have been emg'ed multiple times. How reliable are they? If I have atrophy due to *** it would definetly show....right? Even before clinical weakness.....right? Anyone else with this kinda bfs presentation?
 
Not quite right,as far as I know, atrophy comes AFTER MND palsy, and after any palsy, actually (therefore AFTER clinical weakness) as a result of non-using muscle. Again, it is like staying in the cast. When your muscles not working, even without denervation but just because you do not let them to move, they become wobby and lessen, but this could be gained back. Chronic vasoconstricton by the way should cause about the same due to low oxygen supply and low nutrition. And sinse you do not have clinical weakness but seem to present signs of chronic percieved weakness on both upper and lower limbs, they may get slender just because they do not have enough feed but not signals to move. Here again chronic pressure and stress might take a part. It is by te way quite a feature for chronic stress to have at least upper limbs vasoconstriction (cold hands), but legs also may be involved (I remember that when I was young I had severe pains after each university exams - pains in calves and knees, caused by vasoconstriction and tension due to exam stress - and I was considered that as normal reaction...). Have you tried any measures to deal with this? There are a lot of things to improve situation with stiffness, if it is presumably circulatory issue, first of all physiotherapy like massage, taking herbal bath (both relieves stress and improves circulation), etc. etc.EMG is usually very reliable since it is very simple method of direct recording of electrical signals coming from your muscles. You could PM to the user RainCat and ask for the link to his Tumbler blog about PNH, he has a good article about ENMG there (I just disagreee that it is painless test:)))). I could add that ENMG records are usually statistically processed so even there are poorly visible irregularities, they might be revealed.
 
Yes, I go for massage. It gives very temporary relief. I went for acupuncture for a few months not much relief. I've had blood flow studies. All normal. Doctors are out of test.Any others dealing with constant weakness, stiffness etc.?
 
Sorry to hear about your situation. Mine is similar, though has continued for almost 18 months now. I assume you've had a thyroid panel, tests of vitamin levels (D and B12 in particular), and other metabolic issues ruled out. I had to force my docs to do this, and the result was finding Hashimoto's thyroiditis, a vitamin D deficiency, and related troubles. Correcting these issues has helped.Exercise also helps, though at a high cost. Simple weight-lifting with dumbbells and few repetitions leaves me sore and stiff for days. But I'm slowly building up, or learning to tolerate a lot more pain and such than previously. :)
 
I check in every 2 or 3 months. Closing in on 2.5 years since symptom onset including constant fasciculations, buzzing, vibrating, finger tremors, jerks, you name it, everywhere, I've had it (including during sleep and felt by my wife). I have not had a fasciculation free day in the entire 2 year period, although it is definitely cyclical, but not periodic. I am all too familiar with the "heavy legs sensation." It seems they are at times too heavy to move--a sensation of walking thru waste deep water, and yet I can run, ride a bicycle long and fast, and have good strength. I find it difficult adjusting and making sudden turns while walking without thinking about it and sometimes experience a sensation of my feet slipping. I exercise very hard and it does not alleviate and indeed often exacerbates the fasciculations. I have found, oddly. it temporally alleviates (not completely) the heavy leg sensation the next day. I've thought long and hard about it, and wonder if its not due to the chronic overstimulation of the leg muscles from the fasciculations/vibrations, etc. I was seen and cleared of MND by an excellent neurologist within the first year and have proceeded with my life accordingly. I refuse to continue to make this disease more than what it is. To all of you==you have BFS. I have read the new posts with concerns about speech, tongue, and swallowing--this is my area of expertise. The symptoms described are psychogenic, excluding the symptoms of GERD, and the tongue fasciculations which are BFS. The focus should be on coping with this disease's presentation, instead of continually self evaluating for signs of ALS. I am a therapist and have worked with numerous ALS pts. My fellow BFSers, that disease does not mess around. Symptoms present===unable to walk, talk and swallow within 1-2 years. We all have, to varying degrees, BFS. Accept that. Lets all just try to enjoy our lives, even if we have to twitch, vibrate, jerk, tremor, and slog our way through it. We are all gonna die of something. I'm in my late fifties and am definitely gonna find what peace and happiness I can. Keep moving. I advise all of you to do the same. And just maybes, if we don't kill ourselves with unnecessary anxiety and stress, we will live to see an effective treatment.
 
TatsuDragon15,Yes, vitamin D has been checked multiple times. You say you're experiecing some of the same symptoms. I'd be curious what exactly you're dealing with. You can reply or pm me.mtt
 

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