Ellie. Thank you for the reply and some reassurance. I didn't post the summary of the EMG which stated chronic denervation of the bilateral L4 and L5 . Absent peroneal CMAPS AND EDBs are of uncertain significance. I hope this points away from what I have been thinking ...
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So scared. I dont know what to do.
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Originally posted by Russ3465 View PostI hope this points away from what I have been thinking ...
βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
β
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Hi everyone,
Can't understand that since I noticed my atrophy in my leg april 23rd which has been aching a little more and the atrophy in my right gluteus on may 10th I have been also experiencing stiffness in my shoulders , arms, hand and legs. With a little aching in forearms and fingers since then. Its 24/7 . Dosent go away. My voice still hoarsed fo 5 weeks. I've tried to de-stress and not doing a good job of it. I've tried some muscle relaxes and zanax . Nothing really helps. The more I try Nd relax my body the more little twitches I feel, also some internal vibrating in shoulders. Just wierd feelings. Fueling my anxiety. Can it all be stress and anxiety? Can this all be happening in 5 weeks to me?
Next appt with neuro is for Aug 10th. Which would be 3 months since my last visit and Emg test. I wake up stiff and sore and go to sleep stiff and sore. Just having a hard time with this..
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Oh dear, not good Russ. I hope that on the 10th August your neurologist will be able to tell you whatever is happening and give you treatments that will help. Love Lynne xALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.
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It is horrible for you; waiting another 2 to 3 months to get your next appointment, and hopefully find out more. I hope we will see a final post from you, when you tell us MND has been ruled out, and the cause is curable. My thoughts are with youMum died with MND in 1979 β My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.
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Hi Russ sorry for what your going through, i myself have had problems for 4.5 years now, i too have chronic denervation but for als you need to have both chronic and acute,which you dont have. Also since a dr who specializes in als told you no als i would take that to the bank. Your tremors are most likely from all the anxiety. Hope you come to terms with this. I live in the states too and know the stony brook clinic.
mikael
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