neurofibromatis with muscle wasting

hi.. i am 36 y/o woman with neurofibromatosis 1 . for the last few years i have had muscle wasting in my hands and lately in my shoulders mostly all the symptoms are on the left side but are in the right but milder. the doctor told me that i have brisk reflexes and that my legs are slightly weak. i also suffer mild short term memory loss..can anyone help with this please?

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[4t1074]

You should see a neruo that specalizes in neuromuscular diseases at a large teaching facility, MDA certified.  If you have muscle wasting, that's signs of more issues that what you say, esp. with "brisk" reflexes.

Do you have any twitching?

[helena3970]

i have seen a neuro and hes ordered a mri of the spine and brain..i do get some twitching after exercise which lasts about 30 mins

[4t1074]

I would go to a specalized neuromuscular clinic to rule out ALS.  Have you asked your neuro about that and an EMG?

[helena3970]

the neuro said that if the MRI comes back normal he would do nerve conduction test but he thinks that the MRI will show the problem.
i don't know what he's looking for or what he suspects

[4t1074]

Your "brisk" reflexes are of a concern to me...i've been at this for a year, done a ton of research and brisk reflexes are a sign of lower motor neuron damage and atrophy is a sign of upper motor neuron damage.  I wouldn't wait on a local neuro.  I would make an appt. at a specalized neuromuscular clinic now.  In the meantime, if you figure out whats up, all you have to do is cancel your appt.

[helena3970]

the problem is i'm in the UK so i don't have a lot of choice on which doctors i can see unless i pay to see a doctor privately but that costs alot of money
i guess i just have to wait and see and try not to worry too much