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retiredat44

Myotonic Dystrophy Questions And Medicines

Question

at my latest Neurologist appontment, the doctor agreed to do further testing..

he said there is a blood test for the Myotonic Dystrophy, but that he needs to have the test specially ordered...

Also my records who I have Myoclonic seizures, or at least the doctor sees some proof.. those are the hard jerking moves my limbs do where they can just throw themselves out without warning..

For my appeals I have documents and submitting more for peripheral neropathy..

Just wondering if anyone else takes the drug Clonazepam (I have been given a prescription for it).

Thanx..

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I don't have results back from my Dystrophy DNA test.. but I can defintiely say I have been suffering greatly with all my limbs aching like I had ran a marathon and lifting weights.. and I really do very little around the house... my muschles contunally ache, I spend lots of time needing lots of rest and sleep. and when I can't sleep I double up on Clonazepam. And, as usual, I take my morphine several times a day...

Walking around the block kills me... it really wipes me out..

I really thought my doctor would have contacted me with results by now... I am not sure what to think, but it's hard to believe that only intestinal disease and pancreas disease can make my whole body so painful, weak, and sickly...

I had my DRO appeal hearing December 8, 2010. But, I don't expect anything for a couple more months, if I am that lucky..

Edited by retiredat44

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I was just diagnosed with myotonia congenita. I know it is has been a while since you posted but in case you ever get back on the boards you know you're not alone with this.

I had symptoms of it in the Army, was even "treated" for the symptoms so the S.O. and I sent in a claim. We are born with MC so there is no denying we had it in service. I guess the question is can we prove we had the symptoms?

I wish you well and good luck!

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    • Enough has been said on this topic. This forum is not the proper forum for an attorney and former client to hash out their problems. Please take this offline
    • Peggy toll free 1000 last week, told me that, my claim or case BVA Granted is at the RO waiting on someone to sign off ,She said your in step 5 going into step 6 . That's good, right.?
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    • I took a look at your documents and am trying to interpret what happened. A summary of what happened would have helped, but I hope I am interpreting your intentions correctly:


      2003 asthma denied because they said you didn't have 'chronic' asthma diagnosis


      2018 Asthma/COPD granted 30% effective Feb 2015 based on FEV-1 of 60% and inhalational anti-inflamatory medication.

      "...granted SC for your asthma with COPD w/dypsnea because your STRs show you were diagnosed with asthma during your military service in 1995.


      First, check the date of your 2018 award letter. If it is WITHIN one year, file a notice of disagreement about the effective date. 

      If it is AFTER one year, that means your claim has became final. If you would like to try to get an earlier effective date, then CUE or new and material evidence are possible avenues. 

       

      I assume your 2003 denial was due to not finding "chronic" or continued symptoms noted per 38 CFR 3.303(b). In 2013, the Federal Circuit court (Walker v. Shinseki) changed they way they use the term "chronic" and requires the VA to use 3.303(a) for anything not listed under 3.307 and 3.309. You probably had a nexus and benefit of the doubt on your side when you won SC.

      It might be possible for you to CUE the effective date back to 2003 or earlier. You'll need to familiarize yourself with the restrictions of CUE. It has to be based on the evidence in the record and laws in effect at the time the decision was made. Avoid trying to argue on how they weighed a decision, but instead focus on the evidence/laws to prove they were not followed or the evidence was never considered. It's an uphill fight. I would start by recommending you look carefully at your service treatment records and locate every instance where you reported breathing issues, asthma diagnosis, or respiratory treatment (albuterol, steroids, etc...). CUE is not easy and it helps to do your homework before you file.

      Another option would be to file for an increased rating, but to do that you would need to meet the criteria for 60%. If you don't meet criteria for a 60% rating, just ensure you still meet the criteria for 30% (using daily inhaled steroid inhalers is adequate) because they are likely to deny your request for increase. You could attempt to request an earlier effective date that way.

       

      Does this help?
    • Thanks for that. So do you have a specific answer or experience with it bouncing between the two?
    • Tinnitus comes in two forms: subjective and objective. In subjective tinnitus, only the sufferer will hear the ringing in their own ears. In objective tinnitus, the sound can be heard by a doctor who is examining the ear canals. Objective tinnitus is extremely rare, while subjective tinnitus is by far the most common form of the disorder.

      The sounds of tinnitus may vary with the person experiencing it. Some will hear a ringing, while others will hear a buzzing. At times people may hear a chirping or whistling sound. These sounds may be constant or intermittent. They may also vary in volume and are generally more obtrusive when the sufferer is in a quiet environment. Many tinnitus sufferers find their symptoms are at their worst when they’re trying to fall asleep.

      ...................Buck
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