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Neurology (Expert Forum)
als fear
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
als fear
by klag, Nov 04, 2006 12:00AM
for a doctor to respond. I know you cant diagnos me but here is my story. In 1994 i began with diplopia and dizzy spells on and off. i used to also get bad hamstring cramps on and off. Then in 2003 the diplopia stayed. went to opthamology and they could not figure it out. did blood test for MG and tried 3 weeks of mestinon, did not work. had brain mri clear. In 2004 was in accident (rear end)right foot was in pain. foot dr said planter facisits and gave me foot arch supports. after that i started noticing cramping upon excersion in shoulders and arms on and off. then on sept 15 2005 the fasiculations started, first emg/nvc clear, 2nd emg /nvc occational fasc. i had lost 35lbs at this point lots to do with stress. finally my left foot and calf started to shrink as well as my left hand and forarm, lat etc. i went and had a muscle biopsy by my new neurologist , no answers yet. just had an emg in left ulnar side of hand, between left thumb and finger, left forearme,left shoulder,left calf. remarkabley no pos waves, no fibs,duration normal,amplitude normal,polyphasic none,configuration normal, recruitment normal, nvc normal, f wave peroneal .L normal. My new neuro said that this was to long for als but he is accounting the diplopia and old cramps with this. i have noted weakness in my left hand and am atrophing.my swallowing started bothering my 4 months ago and tongue with fassicultions and had emg in tounge again nothing. original diagnosis was BFS. still get diplopia and dizzy spells. had electrical shock down left body like stroke. your thoughts please. 13 months no answers
Doctor's Answer
by CCF-Neuro-M.D.-SH, Nov 13, 2006 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The story and symptoms that you describe are complex and there is much data that I do not have. I was most concerned about myasthenia gravis(MG) from the story you described. MG causes diplopia (double vision), weakness that is worse at the end of the day and can also be assocaited with bulbar dysfunction (problems swallowing, changes in speech, drooling etc). MG diagnosis is often looked for by antibody tests including binding, blocking or modulating antibodies, but there is also sero-negative MG. I would also suggest a special EMG called single fiber EMG with repetitive nerve stimulation to evaluate for MG. A trial of mestinon is not sufficient since some MG cases require plasma-pheresis etc before responding. You have multiple other symtoms that do not seem to fit a specific pattern (weakness and atrophy with normal EMG; stroke like symptoms with normal EMG) that I am unable to comment on without knowing more about the case. I think the muscle biopsy is a good idea. I would also suggest that you be evaluated by a neurologist that specializes in ALS given the complex nature of your case.
I hope this has been helpful.
The story and symptoms that you describe are complex and there is much data that I do not have. I was most concerned about myasthenia gravis(MG) from the story you described. MG causes diplopia (double vision), weakness that is worse at the end of the day and can also be assocaited with bulbar dysfunction (problems swallowing, changes in speech, drooling etc). MG diagnosis is often looked for by antibody tests including binding, blocking or modulating antibodies, but there is also sero-negative MG. I would also suggest a special EMG called single fiber EMG with repetitive nerve stimulation to evaluate for MG. A trial of mestinon is not sufficient since some MG cases require plasma-pheresis etc before responding. You have multiple other symtoms that do not seem to fit a specific pattern (weakness and atrophy with normal EMG; stroke like symptoms with normal EMG) that I am unable to comment on without knowing more about the case. I think the muscle biopsy is a good idea. I would also suggest that you be evaluated by a neurologist that specializes in ALS given the complex nature of your case.
I hope this has been helpful.
Member Comments (16)
by klag, Nov 04, 2006 12:00AM
To: DR.
I had fogot some stuff,.the fasiculations used to be all over then they would swtich sides left then right. they moved my toes and fingers, i'v had them even jerk my shoulders like im shrugging my shoulders. they have now primarly settled in left side again. if i squeeze my left hand it twitches in fingers and hand. the left ulnar side of hand cramps some time for no reason even at rest(think its called berevis palmerus)side of hand pushes in. My hands for the last 5 months when i wake up are numb(like no feeling) on pinky and ring and middle finger. hands go numb easy. my left foot lost sensation like it had novacane injected in it on the outside for 3 weeks. mouth and tongue went numb for about 10-20min on and off, both sides of stomach have gone numb on and off. my hands look reddish with blotchy white spots when in a down position, gp said circulation and a intern freaked out asking what is wrong with my hands while doing neuro strenght tests because of that coloration.my left bicept has had ongoing burning pain for a long time like its on fire. travelling stabbing pains,jabbing pains in rib cage,used to get breathing fits with rapid heart beats, same fits would wake me up just as i would fall asleep.sleep test level 1 ok. have heart murmer. liver counts elevated on/off. ck levels 90,96,75,76,after excersice 138. urine has on occation been dark brown. urine test ok next day. new neuro mentioned might be a mitochondrial disease and stated in report could be a myopathy of yet known origin.some times my muscles on left side feel as if they have a tickling sensation in then rather than tingling.also all of my jionts really crack and pop. all blood work ok. thank you in advance for response.
by klag, Nov 04, 2006 12:00AM
sorry i dont want to forget anything. i used to get this feeling in my left leg kind of like all my blood was pooling in my leg starting at my foot and moving upwards. it felt like it was being constricted or something and was painfull. i also had that band type feeling around my stomach and back also like someone was tightening a belt around me. its a weird coincedence to me that the stroke like feeling hittig my left side where all of the atrophy is happening. the weird thing is everything started in my right side. when i open a door knob it felt like i couldnt close my hand,if i wrote my right hand would seize up then that all went away. after 13 months cant figure this out. now i found a new dent behind my left elbow. but i can still arm curl 60 lbs (2arms), i have been benchpressing 95lbs 5 sets of 10=50 x 2=100 then a last set of 3x 10 grand total of 130 reps. although my left arm gets way more tired and hurt all the way down the ulnar side like one big long tendon stretching pain. also i will some times get electrical shock feelings travelling from bicep to fingers upon flexing muscle, very painfull. my left foot feels like i walk on bone now. i can still stand in toes and raise them up and walk on heels,but left one hurts. its like i am losing all the fat padding in foot and hand.
by klag, Nov 04, 2006 12:00AM
To: DR
sorry reflexes are also brisk. no response on babinski not up going or down going. an old neuro report from 97 said reflexes normal and down going symmetrical planter respose. so that has changed. at that time no emg was done as i guess i was complaining of twitching but could not see them and they went away and had no mass changes (1997). the eye surgen said he would not operate as my vision keeps changing and opthamologist said eye muscle weekness affecting part of 3rd crainial nerve which is confuseing but not uncommonn for something like MG to do. blood tests clear for antibodies standard test. ct clear of lower lumbar region, chest x-ray clear no paraplastic although cbc elevated at times. also said to have fatty liver after ultrasound. also had stomach checked as had IBS on off over the years. what is your take on all of this. NO LP yet, had lymes test neg, not spinal MRi with contrast yet.
by NickyCouture