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David S replied to the topic Hey all! in the forum Additional Resources 12 minutes ago
I fear you have not connected with the right Doc yet. When is your nexp appointment? Is the new Neuro performing the tests her self?
The EMG test, I believe, is the determining factor, to many Neuros in diagnosing MG. My Neuro put me on Prednisdone and Mestinon before I had my EMG. Prednisdone, 20 mg/day solved my double vision for the mos…[Read more]
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David S replied to the topic Have You Had Eye Surgery to Help Your Vision? in the forum Healthcare and Myasthenia Gravis 5 hours, 47 minutes ago
Had cataract surgery in my right eye last Thursday. What a difference. After just a few days my right eye vision is much clearer and brighter than the left. Most of the bluriness and what I called double vision, is clearly from cataracts.
Left eye in two weeks.
Scott
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David S replied to the topic Agent Orange Exposure and MG in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 days, 2 hours ago
Signed with an attorney today.
Denial below –
1-The available scientific and medical evidence does not support the conclusion that the condition is associated with herbicide exposure. (38 CFR 3.303, 38 CFR 3.307, 38 CFR 3.309)
2-The evidence also does not show that your disease developed to a compeusable degree within the specified time period…[Read more] -
David S replied to the topic Living With An Implanted Port in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 week, 1 day ago
Thank you Karen for your response.
Scott
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David S replied to the topic Agent Orange Exposure and MG in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 1 week, 1 day ago
“Nexus Letters are letters written by medical professionals detailing the connections … List (exposure to radiation, Agent Orange, Camp Lejeune water, etc.) …”
These letters are somewhat hard to come by. They can be purchased on line from $400.00 to $2000+. Most Medical Doctors do not want to write them as they have to say…the person “mo…[Read more]
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David S replied to the topic Agent Orange Exposure and MG in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 1 week, 1 day ago
Talked with a Law Firm today. One of two that I have contacted.
The Lawyer that we spoke with will take our case and feels confident that we will win. They will appeal the previous decision and file for 100% service connected disability. If we don’t get 100% they will file again based on TDIU for 100%.
He understands the situation and says he…[Read more]
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David S replied to the topic Let’s Introduce Ourselves! Use 5 Words to Describe You/ Things You Enjoy in the forum Relationships & Social Life with Myasthenia Gravis 1 week, 2 days ago
Since I was referenced above, I thought I would chime in…..
I do not see myself as brave.
I consider myself stable.
One of the first spots we visit on the cruise ship is the Medical Office to introduce ourselves with the Dr. and make sure they have a ventilator and that they know how to use it. The ventilator should keep me alive until t…[Read more]
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David S replied to the topic Agent Orange Exposure and MG in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 1 week, 6 days ago
Hi John –
Thanks for your input –
I read that section as well.
I hope with a Nexus letter, and numerous VA precedents that have acknowledged service connection, will prevail.
I’m sure I don’t know. We shall see what the Lawyers say.
Scott
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David S replied to the topic Agent Orange Exposure and MG in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 2 weeks ago
Update –
Got my 2nd Denial Letter yesterday.
My VSO said that it was denied because I do not have a letter from a Medical Doctor saying that ” it was more likely that not” that I got this disease due to my Vietnam exposure to herbicides.
It is interesting that the VA shows that MG is on the presumptive list but still requires a doctor’s le…[Read more]
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David S replied to the topic Let’s Introduce Ourselves! Use 5 Words to Describe You/ Things You Enjoy in the forum Relationships & Social Life with Myasthenia Gravis 3 weeks, 1 day ago
Old, Bald, Fat with gMG. 🙂
We have found a great way to spend time together and also plan for the future – traveling. Cruising.
We have been on 2 cruises since I got this thing and are signed up for 3 more. We will cruise the Inside Passage – Alaska, the Eastern Caribbean and a big one, 28 nights in Sept ’25 to Egypt, Greece and other pla…[Read more]
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David S replied to the topic Describe the Moment You Were Undiagnosed With MG, but Realized Something Was Seriously Wrong in the forum Healthcare and Myasthenia Gravis 3 weeks, 3 days ago
My DW and I travelled Full-Time in our 42′ Diesel pusher pulling our towed all over the US visiting everything we could. Museums, battle fields, mountains and deserts. We enjoyed this life-style for about 8 years.
We broke down camp and hit the road to our next destination, which was Cottonwood, AZ, to Work Camp for 3 months in a beautiful d…[Read more]
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David S replied to the topic February 28 is Rare Disease Day! in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 month ago
I did not know there is such a day. In this case Ignorance is Not Bliss.
I’ll look into it.
Thank you,
Scott
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David S replied to the topic Difficulty Doing Paperwork at Appointments in the forum Healthcare and Myasthenia Gravis 1 month, 3 weeks ago
I always take my DW, Carol, with me to all appts. I am fortunate that she reads most of the stuff and helps me ask questions. We always have lots of questions. She also has a better memory than I.
I suppose if I did not have Carol, I would ask them to read for me. So much printed text is too small. Mainly due to my DV I think.
Scott
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David S replied to the topic MG Dentistry Precautions in the forum Healthcare and Myasthenia Gravis 1 month, 3 weeks ago
Update –
Since my post above, I have had one root canal with a crown and 2 extractions. Fear kept me from going since I got gMG.
My dentist has one other MG patient. I brought in some educational documents prior to procedures anyway. for the office to review Every time I come in the office I’m referred to as the MG guy. My wife, Carol als…[Read more]
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David S replied to the topic Managing Prednisone Weight Gain in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 month, 4 weeks ago
10mg/day of Prednisdone.
Tried a number of eating plans over the last few years and have decided to do Nutrisystem.
We are doing the partner plan and hope to lose 30/40 lbs. All gained since having gMG.
I think the biggest problem is lack of calorie burning exercise. We were fairly active b/4 the disease hit.
Scott
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David S replied to the topic Agent Orange Exposure and MG in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 2 months, 1 week ago
Had my C&P Mental Health Exam today.
Evidently my first C&P examiner listed some mental stuff in his report so had my 2nd today.
Exam went well.
We shall see.
Scott
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David S replied to the topic Chemical exposures and MG in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 2 months, 2 weeks ago
Hi Martin –
Wonderful post – greater issue.
So sorry about what happened to you and your family.
I honestly had a hard time believing that US Soldiers were given:
Pyridostigmine bromide (PB)
Anti-nerve agent pill used during the Gulf War as a pretreatment to protect military personnel from death in an attack with the nerve agent…[Read more]
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David S replied to the topic Living With An Implanted Port in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 months, 2 weeks ago
I was hoping for some responses.
Does that mean that no one has a port?
Thank you in advance for posting.
Scott
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David S replied to the topic Agent Orange Exposure and MG in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 2 months, 2 weeks ago
Got notification today that I have another C&P exam appt. on Jan 20th. This one is with a Psychologist.
S
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David S replied to the topic Chemical exposures and MG in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 2 months, 3 weeks ago
Hi Martin –
Have you filed for VA disability compensation for gMG service connection?
“38 CFR 3.309 (up to date as of 11/22/2022)
Disease subject to presumptive service connection”https://www.govinfo.gov/content/pkg/CFR-2011-title38-vol1/pdf/CFR-2011-title38-vol1-sec3-309.pdf
MG is now accepted as a presumptive service connected…[Read more]
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