Hello. I hope you have a moment, I know you are busy. I need help. I have been to 2 neurologists this year and no one can explain why I have gone from walking to cane to wheelchair in 4 months. My ncvs/emgs are not showing malignant fascillations at this time but I can no longer walk. I can stand. I can no longer lift, carry, maintain my life normally. I was originally diagnosed with HOKPP 2 years ago. I had periods of paralysis with falls in potassium. This symptom changed to ongoing weakness,muscle twitches and extremely painful spasms. The twitches are getting worse and the weakness is worse. I can no longer take steps now like I was able last week but I can still stand. My feet are almost completely numb and are partially paralysed. The spasms are all over and sometimes are unbearable to the point i have to increase the baclofen on my own or go to er. The twitches increase the more activity i try to do. I push myself everyday and the more I do the worse i get,with weakness, I can barely swallow and I have stopped sweating.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.
It sounds like you are having weakness in the legs. It is unclear to me what your EMG exactly showed, but this test is important in determining whether or not the weakness is due to the peripheral nerves or the muscle itself. Muscle problems that can lead to difficulty walking with difficulty swallowing include a large group of disorders such as myopathy, of which hypokalemic periodic paralysis is one, but others include inflammatory/autoimmune disorders such as polymyositis, medication-induced muscle injury, some congenital myopathies, and others. Myasthenia gravis is another condition that can lead to weakness and difficulty swallowing. On the other hand, the problem could be in the peripheral nerves, of which there are many many causes including diabetes, vitamin deficiencies, toxins, inflammatory disorders, and others. If you have decreased sweating, involvement of the autonomic nervous system (the part of the nervous system involved in sweat regulation) could be involved as well; there are many disorders that can lead to that.
The diagnosis of myopathy or peripheral nerve disorders would require a good EMG/NCS, as well as sometimes several blood tests and in a minority of cases, muscle biopsy.
If you have limb stiffness in the form of spasticity for which baclofen is prescribed, a spinal cord rather than muscle or nerve disorder would be one possibility. Other tests that would help investigate spinal cord or brain problems would be an MRI of the spine.
You would benefit from evaluation by a neuromuscular specialist (a neurologist specialized in disorders of the peripheral nerves and muscles) may be particularly useful.
Thank you for using the forum I hope you find this information useful good luck.
Thank you very much for your response. I think all i can do is be patient with my VA assigned specialist. I love cleveland clinic and I was there to determine my gastro problems. They found I had a gastric emptying problem. All my tests came back neg. for myasthenis gravis. Spinal tap-neg for ms. Dr. Kolimas did a 4 hour ncv/emg and also tested for nerve response after emerging my arm in ice cold water. He increased my baclofen because it seems to help alot with the spasticity,because it felt like i needed a neck brace to hold my head up most of the time. The mris,spine,brain came back neg. and only showed my c6/c7 spinal pin and plate intact. He diagnosed me with BFS with the hypokpp for now, (he has not seen k dips at all now though). He said there has not been enough time yet to see anything, My next emg/ncv is in oct. He said he did not suspect myopathy. This is experience is terrifying. They jst put me in therapy to 'build up my willpower' whatever that means. Thank you again, You helped me understand what to expect.
help. this is me again. i still cant walk or even stand, im too weak and my neuro cant tell me why. now i have red spots the size of a pinpoint on my legs. I cant even see my children on visitation now because im sick and i dont know what to ask or do. Im really depressed
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