Newbie needs advice

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kaKademichan

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Hey Guys,I have been reading your forum for few days now and I must admitt it helped me a lot. I would like to tell you my story (yes, another the same) and maybe sombebody of you would like to comment on it, however, I know your read many of such here and I also read them.I am female, 29, living in PolandI am anxious (always have been), I am a runner (max 50km per week, for the last week none..), I have a great life (no stresses in work or personal life).I dont recall exactly when I started to twitch, but at the beginning of year I discovered that my friends around do not twitch and I do, I was really suprised that others dont. I thought everybody does... So I might have had that for months or weeks, dont know. But I know it was only in my legs and possibly feet. I associated it with running.I also started having tingling in feet and hands and that made me visit neuro, actually 2 of them (both Phd). They conducted standard but very dilligent neuro tests and all was fine, so one of them told me to measure Mg, and check for Lyme also. Lyme was totally negative and Mg at bottom border. So I thought - great its only Mg. But Mg raised and this did not stop, it actually started to be worse, I got an awful cramp in my palm (on a pinky side) which was coming back (for several seconds, more like pre-cramp as I was able to move my fingers without issues) so I had (on my request) MRI which was great but I wished to consult it with neuro, mine was not there so I went to any. When the dr heard about my twitches she asked if I lost weight or see any dents on my hands, I have not heard about ALS then but when I got to my computer, you may imagine what has happened... This has been at the beginning of February.I straight away had an appointment with a better neuro and he said I have no ALS symptoms and should not worry, but I decided to have EMG. It was conducted by a very experienced PHD and came clear (except for few fascics In calves). She said I am totally fine and even do not need to visit her again, she said I should visit endo. The endo did find low vit d (13,9 whereas the bottom border is on 30) and low Calcium (1 and the bottom is on 0,98), I also had a tetany check (via EMG) which was slightly positive. The endo gave me vit d and calcium (3 weeks ago) but said that she has never seen so many twitches from such values.I started to be really anxious as the twitches started to occur on my hands, especially between thumb and pointing finger (but only when I stretch it specifically, normally it does not twitch) and sometimes on the palm below pinky. I also continued to have those few pre-cramps there. I went for another EMG to different place to check only those spots, all was clean.Then I read about all those people on ALS forum that had fascics first and clean EMGs and got really anxious. This resulted in stiffness in jaw and some issues with tongue. But this is gone.I read the forum diligently and finally yesterday relaxed. But suddenly when I thought I will manage that I got a TERRIBLE crramp in my feet. I am used to them but this one is totally different, first time in my life such (on the bottom of left feet on the outside muscle). I have it the whole day today, it is driving me nuts.I somehow managed to make an appoint with the head of neuromuscular department of the university clinic for tomorrow (private).I am just wondering what the hell is this? I as very comfortable with BSF diagnosis and ready to fight with it. But this cramp has collapsed my theory upside down.Has anybody experienced sth like this lasting for so many hours (12)? I have no weakness, btw.ThanksEwa
 
HI Ewa,cramps are not unusual in our cohort, and even strong ones. I just would like to clarify if you had a cramp for whole day (practically muscular spasm) or your muscle was just sore after initial cramping (which is normal reaction for a strong cramp). cramps might have a twofold nature - they can be result of neuronal hyperactivity or they could be caused by circular troubles (like those we have in cold water due to rapid spasm of blood vessels and lack of oxygen coming to muscles). As your EMG demonstrated some thetany-like activity - it means your muscles are to a some degree hyperactive. This does not mean MND because in MND muscles are vice versa slowly reacting on a stimulus.I think after your visit to neuro you still have to continue with good endo, because spastisity or muscle hyperactivity is often a result of sudden changes in parathyroid gland activity and this should really be eliminated by ultrasound examination and maybe by some bloodwork monitoring. it is not easy to catch up sometimes on a single test.People who have fascis first are still rare in ALS cohort (about few percent only) and sometimes they twitch for months and years before disease onset so we can not exclude pure coinscidence in that case. Normally EMG is still a good proof of having or not having MND so do not mislead yourself.Hope your tomorrow visit would reassure you.
 
Thanks for feedback.I have not had a full blown muscle cramp. I was feeling like half way to cramp. Today it moved into calf more and less in the feet and a also showed a bit in the other feet. I had multiple cramps in past over years and this one was not that bad in terms how it hurt but it was lasting long and was located in an unusual place.My thyroid is in perfect health (I had ultrasonograph and lots of blood tests).As for the twitching between pointing thinger and thumb - what do you think about it occuring almost always in a specific position (fingers stretched specifically when I doing particular action)? I cannot see it, I just feel it, when I touch it it often dissapears.Lets see what the doctor says today.
 
A place between thumb and index finger is a frequent hotspot (a place of constant or repeated twitch) for many fellows. hotspots might arise everywhere and last of hours, days, weeks and even months without any really bad consequences 9except nervous breakdown for the twitcher :( )I am also frequent crampie for years and I also started having them in flareups and in unusual places after BFS onset (like in deltoids or neck muscles). But I am still rahter OK :) Hope doctor would reassure you,hugsYulia
 
So it was not really thaaaaat reassuring.She watched me walking, wanted to see my fascics but I got none during the visit (so typical for me, of course I have them now). She checked my reflexes, all were fine, no overreflexes etc. She said she does not know what that is. When i asked her about ALS - she said no, does not look like. But then when I sked if that can turn into ALS she said no, but that only god can know if one does not get it in future. when I asked her if my risk is bigger then any other women my age, she said no. she gave me Piracetamum (which for me sounds odd as it gives as side effects anxiety) and escitalopram (for anxiety). And I am to show up within a month. I am somehow not satisfied.
 
at least you know that this does not look like ALS.many doctors, especially in Eastern Europe, have no idea about what is BFS. I am from Ukraine, my own doctor believes ALS can start with fascics :( (which is true but takes only few percents of ALS cohort), so she send me for EMG and asked for one year follow up (I missed last wisit in the year and despite on my pains cramps and other show numbers in my BFS circus can not urge myself to see her again because practivcally therer is notinhg new in my condition except extra few kilos maybe I've got because initialy i was loosing weight so I decided OK, noe I can eat more sweets :)))) But my diagnosis still is plainly 'benign myoclonia' (which is about the same as BFS). she never heard about BFS neither about this community of course.right now I have pain in the right ankle, pain in the hands (soft one), some kind of finger tremors (if I press them too strong into a fist) and some strain/pain feeling in the throat, but this is still nothing deradful because I have had those symptomes for over one year without any serious deterioration of my functions... Some of that is a result of sendentary life and extra weight, some is definitely a result of overworking and typing for 10 hours a day, some is a result of my recent vocal lessons (as a newbie I strain my throat too much of course), etc. etc.So must probably your diagnosis would be close to benign fascics I hope. I sympathise you so much because of the need to wait one extra month, but right now either examination results nor your symptomes do not point to MND.HUgsYulia
 
cheers. she said that it might be a type of myoclonia. the only thing that I see odd in what she gave me was the meds which are actually causing twitching... we'll see how it goes.age, clean emg, neuros tests, anxiety, hipochondry, low calcium are all on my side:)keep you posted, thanks for your feedback.take careEwa
 
Hi Manga, I am currently experiencing the half way cramp, as you described, on my left foot and leg for the past 4 days. I was wondering if you have any improvement in this, and if the medication is helping. I just saw my neurologist last Thursday and the foot cramp feelings started Thursday night...she didn't want to see me for another 3 months, but now I am wondering if I should schedule an appointment.
 
Hi - I discovered that my cramps were probabely connected with magnesium latent tetany. I had lots of issues with feet, calves, inner tights, hands. When I stopped running (literraly speaking stopped sweating) and take lots of magnesium - they dissapeard. It was actually much much worse after I played tennis the other day, then run half marathon next day and then went skiing next day - after all that i had a really bad night. Then i called dr and she said - no sweating, continue Mg. This is what I did and now after a week I still sometimes have very tiny cramps here & there lasting for 1 sek but that is getting better every day. I still have not got rid of tingling and twitching. So to sum up - I dont have cramps due to lots of Mg I am taking. I also added potassium and continue calcium.
 
Hi there. Hey I have the same cramping feeling in my toes/feet. It feels like they are about to cramp and the toes are moving around on their own and it is uncomfortable and weird, but then I can get it to stop without getting into a real cramp, but they constantly feel like they are about to cramp depending on what position I have my feet in and especially after I exercise.
 
Ewa & Jen, its good to know that we're not alone with this "about to cramp" feeling! I am glad you seem to have found a solution Ewa. I just started magnesium and calcium as well as eating bananas for potassium, hopefully it works for me too. I emailed my neuro and she was not concerned about it at all...so I will try not to be either. Today I got some homeopathic Hylands brand cramp pills. When I went to the pharmacy there were actually quite a few brands specifically for foot and leg cramps, so this makes me conclude that cramping is not something to be overly worried about since so many people get it. The Hylands really did work...may have been the quinine in it (which I hear is not good in large amounts) but at any rate I am happy...however now that my foot has stopped cramping, I have noticed an ever so slight buzzing feeling in my foot sometimes...grrrrrr. If its not one thing with BFS, its another. And just when my twitching had subsided too.
 

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