20month twitcher with progressing symptoms

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20month twitcher with progressing symptoms

Postby banid on May 27th, 2014, 4:06 pm

hi
i am a medical student and expirienced my first twitches in the first days of university...after 3 monthes i expirienced a wired feeling in my right leg,it ached and felt weak but there was not any clinical weakness it was and is about 0.5 inches smaller than the left one,at this point my emg and mri and clinical assesments was normal 3 drs examined me and told me not to be worried then after a month i saw a kind of atrophy in my right side of chest and rib cage,and some kinds of throat issues,6 monthes later i felt the same feeling in my left leg too,the feeling is constant and except when i rest or walk slowly,then i feel that im not able to take a deep breath,some times better and sometimes worse but never like before,and now im expiriencing right hand ache and heaviness from shoulder to my fingers,as all of them i have twitches all over my body from had to toe
i'm very worried and i dont want to go to docs because if they tell me that it is als I will die...have you seen anyone like this before?
some times my neck muscles ache very bad,i had hand tremor for 6 years,but im very down,i have atrophy, i have tiredness and a kind of weakness that is not seen yet,and now my respiratory system,my throat, my legs and my right hand is not normal,the ache and tiredness of my right hand is killing me just now...
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Re: 20month twitcher with progressing symptoms

Postby banid on May 27th, 2014, 4:14 pm

i forgot to tell that i'm 22 yeras old
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Re: 20month twitcher with progressing symptoms

Postby Yuliasir on May 27th, 2014, 11:58 pm

Banid,
first of all for me it looks like you have very specific way of thinking, sorry for sharp words.

Assume you do have ALS. Does it matter if doctors will tell you that or not? Anyway you will be soon disabled up to the point of not speaking/eating/moving and will need to turn to doctors for palliative prescriptions at least and then die.

By the way you have 20 month in (well above 6 month consensus after which clinical symptomes are obvious on top of preceding suspicious findings in EMG/clinical exam). Three doctors had examined you clinically and with EMG, and no one found nothing suspicious. You are a medical student of course so probably you have an idea how they got their knowledge ... but on the other side it is hard to believe that three colleagues in a row would be complete idiots not able to tell suspicious signs from benign ones.

So what do you have then?
Atrophy? Well, was it medically confirmed? progressing? any idea about the cause?
0.5 inch is not a clincially significant limb diameter difference as you may know as a med student but falls within normal physiological range.
Weird sensations in the legs? Which exactly? Do they prevent you from walking/standing? Do you have a foot drop which is a true sign of quad muscle weakness? Do you fail any tests like walking on the toes/heels?

In the meantime, while you were studing medicine, we had this spring here a fellow member called TDenver (35 yo or so) who presented with unusual symptomes and within 4 month was put to MND and possible ALS diagnosis. here are some differences between him and you:
he was twitching initially (yes yes we all are scare of that!) and ocassionaly asked the doctor to check him becasue he was accompanying his wife suffering MS to the doctor. Doctor had found that he has some grip weakness. TDenver at the moment had no complains for hand weakness at all. So, his situation was completely 100 % different - no complains on patient level but signs of clinical weakness on the test.
then he started to experience intermittent speech slurring and difficulties with voice projection, noticeable to his colleagues and family. he had to elaborate speach strategy in order to mask this.
he had EMG, and it found signs of denervation and reinnervation in his affected areas 9hand and glottal nerve). Beside that he had not signs of clinical weakness, but soon (in few weeks) complained that his grip is really becomes affected. His speech troubles also seemed to be progressing.
Generally it took max. 4 months for him from the first clinical till the diagnosis of MND and possible ALS, and he had clear and progressing signs and doctors inspecting him were concerned even before he was concerned. His EMG was also not clean on early stage of disease and demonstrated SPECIFIC changes suggestive of MND, not just fascilulation activity.

So you can see that your situation (20 month without any real clincial imapirment, 3 doctors not concered, clean EMG) seems to be completely different from what usually people with MND demonstrate.

This may mean that should you have MND, in 20 months you would be clearly DISABLED in some of your functions till the point of complete loss. Especially in having at the same time respiratory, bulbar and limb onset as you may think about yourself... usually people with respiratory onset die very quickly even befor paresis, bulbar onset is also known as to be a fast killer... so as for me as plain observer (and for three doctors who had seen you as specialists) your clinical picture does not match MND, at least not of ALS type...

So what the hell is happen to you?
I do not know. I have no idea what underlying conditions you may have: hormonal, vitamine level, malabsorptions, methabolic disorders, chronic infections like Lyme disease or viral infections like herpres or EBV or varicella which could affect nervous system too.
I do not know if you do strenous excersises to selftest - they seem to be a true source of unpleasant feelings and pains for many of the fellows. I have no idea what substances do you take to keep up with studying loads - maybe you stick on energy drinks which can screw up a bull to be honest, maybe you take veird drug combinations students keep in generations as secret receipes and believe they increase memory and ability to sustain for weeks without normal sleep and eating... who knows? Part of your breathing troubles may be chronic hyperventilation...

Banid, anyway, no matter if you have ALS (which for me is clincially very improbable for now on the basis of your timing and symptomes) or not, I believe that refrain form visiting a doctor is not a wise thing.
people who still have MND (not necessarily ALS) doing that loose their insurance benefits. People who have not MND but other chronic conditions, including chronic stress and somatization disorders or methabolic disorders or other issues loosing the chance to get timely help and increase comorbid disorers chances sky high.

Believe me, no one doctor seeing you crooked at one side due to chest muscle atrophy as a Richard the III, hardly breathing due to respiratory muscel weakness, mumbling words and drooling due to bulbar problems, enable to excersise a simple grip test - no one would dismiss you as a healthy person. Or it may be that he or she would attribute your symptomes to another disorders evaluating their intensity and profoundness with a fresh and impartial look.

wish you good luck
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Re: 20month twitcher with progressing symptoms

Postby banid on May 28th, 2014, 4:01 am

yes,that's right,i will visit my neuro today,he will do an emg at over visit,and every thing end up,with good news or bad one
i will tell you the result
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Re: 20month twitcher with progressing symptoms

Postby banid on May 28th, 2014, 2:17 pm

i visit my neuro today who is my professor in the university...he did clinical tests including reflexes and some weakness tests,shown nothing
then he did an emg from my right leg which was first affected and my right arm deltoid muscle,nothing shown and a new normal emg,he thinks my chest assymetrial is because of fat loss not muscle loss,he said if it was mnd in the first 6 month i had severe weakness and absoloutly an abnormal emg
but i want to describe you the emg procces,he put the needle in my muscle and looked at the monitor for about 30 seconds then asked me to force with my leg for 10 seconds and told me normal,the same on my shoulder...is it enough you think? i think your emg procces is so long,is'nt it?
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Re: 20month twitcher with progressing symptoms

Postby Yuliasir on May 28th, 2014, 2:34 pm

there are different ways to make EMG, BUT if you have normal clinical, short emg might be justified because at 20 month history and clean clincial nothing really could be expected to see.
also in 20 months deficites should be so evident that even a short EMG might pick them up.

so do not worry about this too much. young person with clean clinical tests usually does not need EMG at all.
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Re: 20month twitcher with progressing symptoms

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