Rating Dystonia

[bakerkd]

I am interested to see if anyone on here can answer how dystonia would be rated. From what I understand it would be rated as either Tic, convulsive Max 30% or Paramyoclonus Multiplex 60%depending on severity of muscle contractions. Is the accompanying Peripheral Neuropathy rated as seperate or factored into one of the two ratings above? The neuromuscular stuff is pretty confusing. I'm pretty lost as far as how this would be rated. Has anyone on here been rated for this or helped with a similar claim.

[Berta]

gee I only found 2 BVA decisions put of 573378 when I put Peripheral Nerve Hyperexcitability Syndrome into BVA browser and those decision were extremely detailed-

we sure have vets here with PN diagnosis and dystonia etc-hope they chime in-

do I recall that the doc did put into your SMRs that you have neuropathy due to dystonia?

[bakerkd]

gee I only found 2 BVA decisions put of 573378 when I put Peripheral Nerve Hyperexcitability Syndrome into BVA browser and those decision were extremely detailed-

we sure have vets here with PN diagnosis and dystonia etc-hope they chime in-

do I recall that the doc did put into your SMRs that you have neuropathy due to dystonia?

Thanks for looking Berta. I found out that muscle pain fasciculation is also called cramp-fasciculation and usually lumped along with neuromyatonia under the generic term "Benign Fasciculation Syndrome" There are quite a few BVA cases under that term. The benign meaning not a progressive motor neuron disease ie; ALS. Most forms of BFS only cause fascic's or twitches that are nothing more than an annoyance. Muscle,Cramp and Neuromyatonia (Issacs Disease) are Peripheral Nerve Disorders which can become disabling.

The neuro who initially diagnosed me stated (to me) that my nerve pain is from a Peripheral Nerve Hyperexcitability Disorder, possibly muscle-pain fasciculation syndrome. Thats what I meant by not being a hard and fast diagnosis. Its "A" PNH Disorder just not sure what name to give it, from what i understand the symtoms determine that. His Nerve Conduction Study was way beyond anything I have had previously or since. He spent a full hour shocking the hell out of my ulnar nerve. He said he went looking for specific potentials at a certain frequency and found them and didnt need to look at any other nerves (i was scheduled for both arms and both legs) since if it is in one peripheral nerve it is in all.

Went to different Neuro for different reason and he says hes fairly sure I have cervical dystonia and that he thinks thats the cause of my neuropathy. Basically I have two different neuro's who both think that the cause is something different.

Personally I'm going with the "Published" neurologist who deals in rare neurological conditions at a major regional ALS clinic. He says he has signature of a PNHD and thats good enough for me. The pamphlet you posted is the same one he gave me in his office, it references the frequencies of the droplet potentials. The problem i have however is that what he sent back to the referring doctor was just a short paragraph stating that i didnt have motor neuron disease and that I "may" have muscle pain fasciculation. No test results. He omitted the fact that he definately found a PNHD and just mentioned which one he thought it may be. I have requested my entire record from his hospital. I will present those test results to Neuro #2 and see if he's still convinced its from Dystonia. In the mean time treatment for the dystonia not going well, sheduled for botox in the neck and TRICARE not exactly being helpful approving it. I guess they think I'm having my crows feet touched up.

[Berta]

"In the mean time treatment for the dystonia not going well, sheduled for botox in the neck and TRICARE not exactly being helpful approving it. I guess they think I'm having my crows feet touched up"

LOL That was good one! we need humor here!

I have similiar potential problem-

I had a cyst removed from my back, biopsy said it was OK and the doc really didnt expect it to be malignant-but only could be sure with biopsy-

I said to the doc when it was over- 'gee Doc -now with that cyst gone, I can start chasing men again-'

(But if he put that in my meds recs I guess that would be considered cosmetic surgery-I dont think insurance will pay for it. :) )

You sure have realised that VA goes with what they can understand-they would rather accept a brief wishy washy medical statement from some C & P doctor then a definite detailed diagnosis from a real doctor.

And they are more familiar with "periphral neuropathy" than the term of the condition you have-which certainly seems to me to be also Peripheral Neuropathy.

I dont think they will attempt to defeat a good medical statement from your expert doc who can certainly provide a solid medical rationale.

[edsteph98]

Thanks for looking Berta. I found out that muscle pain fasciculation is also called cramp-fasciculation and usually lumped along with neuromyatonia under the generic term "Benign Fasciculation Syndrome" There are quite a few BVA cases under that term. The benign meaning not a progressive motor neuron disease ie; ALS. Most forms of BFS only cause fascic's or twitches that are nothing more than an annoyance. Muscle,Cramp and Neuromyatonia (Issacs Disease) are Peripheral Nerve Disorders which can become disabling.

The neuro who initially diagnosed me stated (to me) that my nerve pain is from a Peripheral Nerve Hyperexcitability Disorder, possibly muscle-pain fasciculation syndrome. Thats what I meant by not being a hard and fast diagnosis. Its "A" PNH Disorder just not sure what name to give it, from what i understand the symtoms determine that. His Nerve Conduction Study was way beyond anything I have had previously or since. He spent a full hour shocking the hell out of my ulnar nerve. He said he went looking for specific potentials at a certain frequency and found them and didnt need to look at any other nerves (i was scheduled for both arms and both legs) since if it is in one peripheral nerve it is in all.

Went to different Neuro for different reason and he says hes fairly sure I have cervical dystonia and that he thinks thats the cause of my neuropathy. Basically I have two different neuro's who both think that the cause is something different.

Personally I'm going with the "Published" neurologist who deals in rare neurological conditions at a major regional ALS clinic. He says he has signature of a PNHD and thats good enough for me. The pamphlet you posted is the same one he gave me in his office, it references the frequencies of the droplet potentials. The problem i have however is that what he sent back to the referring doctor was just a short paragraph stating that i didnt have motor neuron disease and that I "may" have muscle pain fasciculation. No test results. He omitted the fact that he definately found a PNHD and just mentioned which one he thought it may be. I have requested my entire record from his hospital. I will present those test results to Neuro #2 and see if he's still convinced its from Dystonia. In the mean time treatment for the dystonia not going well, sheduled for botox in the neck and TRICARE not exactly being helpful approving it. I guess they think I'm having my crows feet touched up.

[edsteph98]

I was diagnosed with cervical dystonia, headaches, low back pain, muscle joint pain and the board denied my claim for dystonia as it was diagnosed after separation. The headaches were considered to be non -compensable, i guess because I never kept a log. I was actually disabled from my job due to cervical dystonia and developed atrophy of the left scm muscle. My headaches had continued (not related to cervical dystonia). I have requested to re-open my claim file under Presumptive Disability from the gulf war.

I am just venting but it sure does appear I am not alone with a diagnosis of dystonia and it has continued to progress. I just went for a Persian Gulf War registry exam and my PCP at the VAMC thinks I am depressed because I have no energy, problems sleepping and am fatigued. I exaplained the them I was in a forward deployed unit and served 3tours of duty in the gulf but it seems to be falling on deaf ears....

[Berta]

It appears that they questioned the inservice nexus- did you have an IMO?

Does this disability or symptoms of it appear in your SMRs?