BFS and Anxiety: Relief Found

[woppyslippy]

Hi, over the last few months I have had a lot of symptoms of BFS, and a lot of anxiety about ALS and other motor diseases along with it. This site has really put me at ease, so thank you all for the info. I definitely don't think I have these awful diseases anymore, and doing my own Schaeffer reflex test confirms I do not have a Babinski response or anything sinister. The symptoms I have are a palmer brevis spasm (which kicked this whole fear off a week ago because I thought it was atrophy + twitching), widespread fascics in my right leg, twitching in both sets of toes, biceps, my left side under left ribs, along the centre of upper spine (behind my heart) and up behind my left shoulder etc etc. I also get sciatic leg cramps in my right leg, especially at night, which is painful. Some times I am also awoken with a huge leg jolt. Cold, white, tingling hands and feet which are prone to cramping are also normal for me upon waking. Now, as background info, I live in the UK and am a very thin 20 year old guy - 120lb at 5ft 9.5 - so I can't say i've noticed an obvious difference in muscular tone, because i've been near anorexically thin since I was about 10. I have trouble keeping weight on and it comes off easily. Some days my legs can feel numb and weak, but apart from that i'm the same (low) strength I have always been. Recently after two stays in hospital I was diagnosed with something called POTS syndrome, a form of dysautonomia. My cardio is treating it with 5mg ivabradine twice per day which has helped a lot. Symptoms I get with POTS are diziness, fast heart rate upon standing, fatigue, palpitations, headaches and anxious feelings. I eat even worse as a result of this.I also have scoliosis in the upper part of my spine - I do not know which columns exactly, but the curve is below 30 degrees angle. I was diagnosed with this at 15, just before I stopped growing. As part of my job and hobbies, i've been a hardcore computer user for years, clocking at least 8 hours per day. I take.... zero exercise, just sit in my chair all day most days. My posture is, quite frankly, a mess - I already know I have hyperlordosis and a slight hunched posture at the top. My neck also cracks and crunches a lot when turned.Basically, I am going to see my doctor this week to ask for a neurology referal to see if everything is alright on that end. I am just looking for some answers as to why my body, which has always been a bit wonky with some twitches and dizziness, has suddenly gone into chaos in this last year. Anxiety is definitely another factor, as i've always been very anxious (had a stammer corrected as a boy) and get upset easily about health problems. I was on beta blockers for 6 months but their effects wore off and caused issues like partial branch block of the heart. I am wondering if all my ailments could all possibly be connected, as opposed to seperate neuro and heart conditions? Besides ALS et al, that is probably my big fear that I have some degenerative underlying disorder.

 

[BlueMan]

Glad to hear the posts here have allayed your fears. There are many people here who have various underlying or co-existing troubles. I have Hashimoto's thyroiditis, probable celiac disease (can't confirm this b/c I can't eat enough gluten and I'm IgA deficient), and thrombocytopenia, plus a vitamin D and B12 deficiency. My docs are working on all this.There are lots of possibilities, inside and outside of neurology, that may explain some or all of what you are dealing with. Like you I'm very lean for my height and frame, and have to make an effort to keep my weight up (a bit of an oddity given the hypothyroidism). As a result of limited eating and malabsorption, I have trouble getting all the nutrients I need, resulting in the deficiencies I mentioned above. I hope your docs will work with you on testing and ruling in/out these possibilities. Many are easily corrected and doing so improves quality of life a lot.

 

[Gracer]

Hi Slippy,with the coditions you describe there is nothing strange on my point of view that your body as you say 'went into chaos'. For me most probably the reasons should be the same that keep you too slim for your age and give you your POST syndrome, whatever it could be. Because if certain condition causes weak bones, tendons and muscles, it usually also comes together with heart palitations, low electrolytes, spasms/cramps, anxiety and might result in BFS. I am not underweight, but I have weak tendons, joints hypermobility, low Ca (below lowest limit for many years already), had a scoliosis when I was at the age of 7 (therapied till I was 11 when it was stabilised), high heartbeat well above 90 wihtout excercises (intemittent condition), palpitations sometimes (I was told once that I have mitral valve prolapse - but then I read that it is literally every second person who has it and only very seldom it causes CHF), subclinical thyroid disbalances and I am a GAD sufferer since I was 6 years old. So it is a certain combination of variabilities on methabolism (in my case rather slight or moderate) which fits specific picture of BFS prone person What doctors say about your endocrine status? BFS is actully triggered by certain (or several) factors. Most probable are prolonged stress, viral infection, even 'innocent' like flu or bowel flu, physical overexetrion (I managed to get this by sitting at the PC for 12-14 hours a day), any crisis in your body you can imagine or certain medications taken for long time. You could search of KurtBohan user posts, as he did a real statisctics review for the reasons and he also made a sticky survey post.regards abd best wishesYuliaIt is so good to see you are not obsessed with MND fears any more. That would help a lot, believe me.

 

[woppyslippy]

Hi all, I went to the doctor yesterday but he did not seem concerned about ALS or any sort of MND. He is going to see me again this week to test my sensation and reflexes, and then take a neurology referall from there if he thinks it is necessary. He also picked up on the general health anxiety which I have and has made the suggestion of referring me to a psychologist. Another blood test will also be done.The thing is though, I have had about 6 blood tests in the last couple of months due to the POTS syndrome, and none had any problems apart from the last one which had very high levels of B12, folate and slightly higher blood count - the reason for this was probably because I was taking vitamins for the POTS. Other tests I have had are exercise tolerance, heart ultrasound, 24 hour urine, and adrenal ultrasound - all fine. I am not sure about thyroid and endocrine function, I just assumed they were part of the blood test.I think you are both right in that a certain body type / lifestyle can influence BFS. Perhaps inactivity and a below normal BMI are the culprits in our cases. I had recently gotten over a chronic sinus infection with 5 days if prescribed amoxicilin, and that + ALS anxiety appears to be the starting point of the major fascics this week.I'll keep you updated on whether things improve.

 

[woppyslippy]

Little update on this. I had my neuro appointment today and it went very well. He conducted a basic neurological exam, checked my balance, strength, sensation and reflexes, which were all fine. He also checked the Lhermitte's Sign for MS as my uncle has this, and I didn't feel any electric zaps. I have some hyper-reflexia (my leg shoots out when knocked), but it is on both sides so he doesn't think this is a problem. He was not concerned about any symptom really - in fact, he was much more concerned for my mental well being and anxiety over the whole thing. He also believes much of what I am experiencing could be attributed to POTS. I am going to be receiving an MRI to put me at ease, which he is 100% certain will be clear. He also said I should put on weight as I look like i'm "wasting away" - not something we BFS'ers want to hear, but it's not caused by disease so I must not worry.I had also started experiencing eye issues a couple of months ago (palinopsia, increased after images, 'shaky eyes') and have been referred to a neuro-ophthalmologist later. It is most likely caused by the medication for POTS, but I have been off it for a week as a trial run and still have it to an extent. The MRI should benefit that appointment too at least. He left me with the advice that I should just get on with my life now, which seems to be the main mantra of this forum and ultimately very very true.