Lynk
Active member
- Joined
- May 20, 2015
- Messages
- 31
- Reason
- PALS
- Diagnosis
- 05/2015
- Country
- US
- State
- FL
- City
- Tallahassee
This is from the report by the neuromuscular doctor at Shands/Jacksonville Florida. I would appreciate your input and help with the questions I pose below.
"Needle EMG demonstrated active denervation, chronic reinnervation, and reduced voluntary motor unit recruitment in the right FDI, EDI, FCR, biceps and deltoid muscles. The right T6 and T8 para spinal muscles were normal. The right quadriceps, iliopsoas and tibial is anterior muscles were electromyographically normal."
"The presence of painless rt. arm weakness, without objective sensory loss and accompanying hyperreflexia is involved segments is concerning for ALS. The needle EMG demonstrated significant active denervation in affected muscles indicating that this is a lower motor neuron condition; the hyperreflexia indicates accompanying CNS dysfunction. At this time I do not find evidence of LMN dysfunction in other limb muscles and therefore a diagnosed of ALS cannot be made at this time. However, I think it unlikely that her condition is caused by structural root disease as this would have to involve the C5-C8 segments, be painless, purely motor, and have unexplained hyperreflexia. Likewise, brachial plexus dysfunction is unlikely. I think her hx of mild improvement in pinch strength is uncertain and needs to be followed. Clearly is she does show improvement then ALS is unlikely.
Given my suspicion for ALS and how safe rilutek is it might be worthwhile to utilize this drug in the early phase of her illness.
I would like to re-examine her clinically and electrophysiologically in 6 months if there is no deterioration or sooner if her condition changes."
After this appointment I came away with the clear feeling that he thought this was ALS, although he wasn't ready to call it. As I have pondered my options which include applying for SSDI I realized that they may deny me as long as he is not definitive. I called him and he said that I just don't reach his threshold for this diagnosis until it spreads to other limbs, but could not give me any other cause of the problem with my right arm and hand. Also, I told him that I have had some changes--that I have started to have spasms in my hand probably 10 times which started after I saw him. But It didn't seem that he took that as very significant. Just said I should talk to my local neuro and ask for klonapin.
So do I have to wait until November to see him, get a firm diagnosis and then apply for SSDI? My local neuro coded it ALS in the prescription for rilutek, but don't know if that is enough for SS. Will they want the second opinion to make the judgement? What if I apply and get denied and then reapply after a firm diagnosis. Does it work against you? Problem is that I want to retire in Sept. and travel and do things while I am still pretty functional. But unless I have SSDI in place I won't be eligible for Medicare and health insurance will cost a fortune.
Would some doctors call it with this set of symptoms and test results or do they all wait until it is in more than one limb?
I asked my local neuro about a consult at Mayo Jax which is a center for excellence. My current HMO insurance doesn't normally cover Mayo, but I could probably get a consult through and then I will be changin insurance at the next open enrollment so I can go there, but that won't take effect until Jan. 1 2016.
All this stuff to deal with is stressing me out and I so appreciate any words of wisdom any of you have. Thank you.
"Needle EMG demonstrated active denervation, chronic reinnervation, and reduced voluntary motor unit recruitment in the right FDI, EDI, FCR, biceps and deltoid muscles. The right T6 and T8 para spinal muscles were normal. The right quadriceps, iliopsoas and tibial is anterior muscles were electromyographically normal."
"The presence of painless rt. arm weakness, without objective sensory loss and accompanying hyperreflexia is involved segments is concerning for ALS. The needle EMG demonstrated significant active denervation in affected muscles indicating that this is a lower motor neuron condition; the hyperreflexia indicates accompanying CNS dysfunction. At this time I do not find evidence of LMN dysfunction in other limb muscles and therefore a diagnosed of ALS cannot be made at this time. However, I think it unlikely that her condition is caused by structural root disease as this would have to involve the C5-C8 segments, be painless, purely motor, and have unexplained hyperreflexia. Likewise, brachial plexus dysfunction is unlikely. I think her hx of mild improvement in pinch strength is uncertain and needs to be followed. Clearly is she does show improvement then ALS is unlikely.
Given my suspicion for ALS and how safe rilutek is it might be worthwhile to utilize this drug in the early phase of her illness.
I would like to re-examine her clinically and electrophysiologically in 6 months if there is no deterioration or sooner if her condition changes."
After this appointment I came away with the clear feeling that he thought this was ALS, although he wasn't ready to call it. As I have pondered my options which include applying for SSDI I realized that they may deny me as long as he is not definitive. I called him and he said that I just don't reach his threshold for this diagnosis until it spreads to other limbs, but could not give me any other cause of the problem with my right arm and hand. Also, I told him that I have had some changes--that I have started to have spasms in my hand probably 10 times which started after I saw him. But It didn't seem that he took that as very significant. Just said I should talk to my local neuro and ask for klonapin.
So do I have to wait until November to see him, get a firm diagnosis and then apply for SSDI? My local neuro coded it ALS in the prescription for rilutek, but don't know if that is enough for SS. Will they want the second opinion to make the judgement? What if I apply and get denied and then reapply after a firm diagnosis. Does it work against you? Problem is that I want to retire in Sept. and travel and do things while I am still pretty functional. But unless I have SSDI in place I won't be eligible for Medicare and health insurance will cost a fortune.
Would some doctors call it with this set of symptoms and test results or do they all wait until it is in more than one limb?
I asked my local neuro about a consult at Mayo Jax which is a center for excellence. My current HMO insurance doesn't normally cover Mayo, but I could probably get a consult through and then I will be changin insurance at the next open enrollment so I can go there, but that won't take effect until Jan. 1 2016.
All this stuff to deal with is stressing me out and I so appreciate any words of wisdom any of you have. Thank you.