[David S]

Kind of a strange post.

I have been Denied twice and am now Appealing with the assistance of a Law group that specializes in VA disability claims. My Appeal has been Docketed for review by a VA Judge but the decision could be 125 days to 550 days as of Sept 25, 2024 the VA; letter states.

Scott

[David S]

Hi anne –

I too have been getting IVIGs for over 4 years.

Having Needle Anxiety does not help but I have learned over time to relax and stay well hydrated both the day before the infusion and the day of. I try to drink 5 sips of water where I would only take one. Fill up.

I go to the Infusion Lab, at my VA Hospital, every 4 weeks as the VA will not allow the medicine using the home subcutaneous method. I usually get plugged in by 9 AM and am on my way home about 1:30 PM. The drip is increased during the infusion to not overload your system.

The nurses are great and hit a different arm each infusion to try to save the veins. The back of the hand does not work for me and depending on the day, a variety of veins in my arms get used. Sometimes they can not find a vein so a Pick Team comes with an Ultrasound device that allows the Technician to see the veins and hits the vein. I have had the Pick Team a number of times but most times the Nurse does quite well. I also need the restroom during the infusions, due to the amount of water I drink. Having been getting IVIGs for some time, It seems I am now given the new Nurses to try to get the needle set in place. Some times that bothers me, but, they too need need experience with some one like me – needle anxiety.

I have not had a Crisis while undergoing IVIG treatment. At first I would notify the Nurse of my bathroom needs and they would unplug the power from the pump, detach the arm Blood Pressure cuff and I would drag the IVIG tree into the rest room. Now I detach the cuff and pull the power cord to the pump and make my way to the restroom. The Nurses watch us very carefully and are always ready to assist.

This might be helpful:

https://www.igliving.com/magazine/articles/IGL_2006-10_AR_IVIG-Infusion-Guide-Tips-to-Make-Infusion-Days-Easier.pdf.

The IVIG is not a cure for me, and some times I cannot tell the difference after the Infusion. However, I can tell that I am due for another treatment 3 to 5 days before my next infusion as my fatigue increases, swallowing gets harder and my speech starts to deteriorate.

Good luck with your infusions – They do help.

Scott

[David S]

Hi Matt –

Thanks for your response. So sorry for all of your challenges and that Vyvgart isn’t effective for you. As I am sure you are aware, many are not getting the results that were potentially “promised”.

For many the time between each series is getting shorter and shorter to the point where 4 infusions get you 30 days. I have not seen the statistics, but would be interesting. Our gMG effects us all a bit differently and I think a lot depends upon the severity of the symptoms.

For many, it works great. For me I will wait for a while….

Good luck,

Scott

[David S]

Sorry to hear about both of you. Does your Dad have gMG as well?

I guess you might have an argument for getting it from Him but the Nexus between you and your Dad’s service in Vietnam will be difficult to document.

I have placed an address that will give you some more information.

Good Luck…..

– BTW – I have no idea why the web page is being displayed. –

http://www.publichealth.va.gov/exposures/agentorange/benefits/index.asp

publichealth.va.gov

VA.gov | Veterans Affairs

Apply for and manage the VA benefits and services you’ve earned as a Veteran, Servicemember, or family member—like health care, disability, education, and more.

[David S]

Hi Doug –

If you view the text from the Nexus Letter above, there are a number of Parentheses’ “()” in the text. For example: “…<i style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>a nexus between ADs and AO (2-20).” The References are in the “()” ie: (2-20). There are numerous References in that text.

References below:

“References:
1. Myasthenia Gravis: A Review. Autoimmune Dis. 2012; 2012: 874680.
2. Miller FW in The Autoimmune Diseases Vol. 4 (eds Rose NR & I. R. Mackay) Ch.
23, 297–308. (Elsevier, 2006).
3. Anaya JM (2010) The autoimmune tautology. Arthritis research & therapy 12: 147
4. Anaya JM, Corena R, Castiblanco J, Rojas-Villarraga A, Shoenfeld Y (2007) The
kaleidoscope of autoimmunity: multiple autoimmune syndromes and familial
autoimmunity. Expert review of clinical immunology 3: 623–635
5. Selmi C, Leung PSC, Sherr DH, Diaz M, Nyland JF, et al. (2012) Mechanisms of
environmental influence on human autoimmunity: A national institute of
environmental health sciences expert panel workshop. Journal of autoimmunity
6. Rook G (2011) Hygiene Hypothesis and Autoimmune Diseases. Clinical reviews in
allergy & immunology: 5–15.
7. Youinou P, Pers J-O, Gershwin ME, Shoenfeld Y (2010) Geo-epidemiology and
autoimmunity. Journal of autoimmunity 34: J163–7.
8. Pigatto PD, Guzzi G (2010) Linking mercury amalgam to autoimmunity. Trends in
immunology 31: 45–48
9. Finckh A, Cooper GS, Chibnik LB, Costenbader KH, Watts J, et al.
(2006) Occupational silica and solvent exposures and risk of systemic lupus
erythematosus in urban women. Arthritis and rheumatism 54: 3648–3654.
10.Kiyohara C, Washio M, Horiuchi T, Tada Y, Asami T, et al. (2009) Cigarette
smoking, N-acetyltransferase 2 polymorphisms and systemic lupus erythematosus
in a Japanese population. Lupus 18: 630–638.
11. Shoenfeld Y, Aharon-Maor A, Sherer Y (1997) Smoking and immunity: an
additional player in the mosaic of autoimmunity. Scandinavian Journal of
Immunology 45: 1–6.
12.Cooper GS, Gilbert KM, Greidinger EL, James JA, Pfau JC, et al. (2008) Recent
advances and opportunities in research on lupus: environmental influences and
mechanisms of disease. Environmental health perspectives 116: 695–702
13.Chang C, Gershwin ME (2010) Drugs and autoimmunity A contemporary review
and mechanistic approach. Journal of autoimmunity 34: J266–75
14.Barbara G, Cremon C, Carini G, Bellacosa L, Zecchi L, et al. (2011) The immune
system in irritable bowel syndrome. Journal of neurogastroenterology and
motility 17: 349–359.
15. Shoenfeld Y, Agmon-Levin N (2011) “ASIA” – autoimmune/inflammatory
syndrome induced by adjuvants. Journal of autoimmunity 36: 4–8
16. Shoenfeld Y, Selmi C, Zimlichman E, Gershwin ME (2008) The autoimmunologist:
geoepidemiology, a new center of gravity, and prime time for
autoimmunity. Journal of autoimmunity 31: 325–330
17.Chighizola C, Meroni PL (2012) The role of environmental estrogens and
autoimmunity. Autoimmunity reviews 11: A493–501
18.Farhat SC, Silva CA, Orione MA, Campos LM, Sallum AM, et al. (2011) Air
pollution in autoimmune rheumatic diseases: a review. Autoimmun Rev 11: 14–21
8 Siebert, D.
19.Gourley M, Miller FW (2007) Mechanisms of disease: Environmental factors in the
pathogenesis of rheumatic disease. Nature clinical practice Rheumatology 3: 172–
180.
20.High Prevalence of Myasthenia Gravis Among Rural Adult Populations. J Cli
Neuromuscul Dis, 16 (2), 47-50 Dec 2014
21.Institute of Medicine, Committee to Review the Health Effects in Vietnam Veterans
of Exposure to Herbicides (1994). Veterans and Agent Orange: Health Effects of
Herbicides Used in Vietnam. National Academies Press
22. https://www.atsdr.cdc.gov/toxprofiles/tp104.pdf
23. https://www.atsdr.cdc.gov/toxprofiles/tp3.pd“

In my argument made to the VA, by my Attorneys:

“One of the reasons the Court has found a VA medical examination or opinion
to be inadequate is where the physician does not address all legal theories of entitlement
to service connection. “A medical examination is adequate where it is based upon
consideration of the veteran’s prior medical history and examinations and also describes
the disability in sufficient detail.” El-Amin v. Shinseki, 26 Vet. App. 136 (2013). A medical
opinion is inadequate if it is based on inaccurate factual premise. See Reonal v. Brown, 5
Vet. App. 458, 460-61 (1993).
In the case at hand, the VA examiner and the adjudicators relied solely on
myasthenia gravis not being a presumptive Agent Orange related condition to deny
service connection without meaningful analysis on the veteran’s exposure and
individual medical history, including his lack of alternate risk factors for developing the
disease.”

Later in the Argument:

“Dr.
Baber pointed out that dioxin/benzene and its inherent properties have the propensity
to stay dormant in the human body for decades before symptoms are apparent. Dr.
Baber further noted that one can clinically extrapolate Mr. Seibert’s exposure to AO,
which has an inherent component of dioxin/benzene, manifested in myasthenia gravis
years later.”

I am neither a MD or Attorney and really do not understand how all of this fits together. I am hopeful that the documents submitted, to the Board, will be sufficient to Rate my gMG as a Service Connected disability. The VA has Rated gMG as Service Connected in many claims long after their stated 1 year requirement.

My previously submitted claim Appeal that was Declined, and did show many of the References that Dr Baber uses. However, my previous Appeal did not have a recognized/qualified MD making a written statement that My gMG was more likely than not Service Connected.

The VA also wrote in my second Appeal that I did not have a Nexus Letter from a Qualified/Recognized MD.

I hired and Attorney to handle this Appeal as I did not have the Language or Resources to address the VAs Denials.

Scott

[David S]

Thought I’d place interesting stuff….

From my Nexus Letter

“Multiple lines of evidence suggest that ADs have an environmental component. In some
individuals, disease improves after removing a suspected environmental agent and/or
worsens or reoccurs after re-exposure to the suspected agent. In addition to their role as
possible initiators of autoimmunity, environmental factors might alter the rate of
progression to clinical disease, the specific manifestations of disease expression, and/or the
course of illness. After certain disease-initiating exposures, decades can pass before
autoimmune disease manifests, and there can be a progression of stages from autoimmunity
to preclinical disease with immune alterations to classifiable autoimmune disease. Despite
the difficulties in defining environmental risk factors that lead to immunopathology, the
number of candidates proposed for specific ADs is continuously growing. A significant
body of research has pointed out that for autoimmunity to occur, the genetic background
warrants to be combined with environmental injuries and novel associations have been
described as the cause of the air pollution. Pollution and contaminants, such as AO
contaminants are hallmark toxicants which have been noted to be putative toxicants.
Solvents are liquids that dissolve a solid, liquid or gas. Organic solvents (AO) are
compounds whose molecules contain carbon. They may be broken down further into
aliphatic-chain compounds, such as n-hexane, and aromatic compounds with a 6-carbon
ring, such as benzene or xylene. One must review and understand the inherent component
of AO involved to make a nexus between ADs and AO (2-20).
Benzene or dioxin, which is an inherent chemical of AO, is a putative disease-causing
agent. Dioxin, also called polychlorinated dibenzodioxin, is a group of aromatic
hydrocarbon compounds known to be environmental pollutants that are generated as
undesirable by-products in the manufacture of herbicides, disinfectants, cleaning products
and other agents. It is generally synonymous with one specific dioxin: 2,3,7,8-
tetrachlorodibenzo-para-dioxin (2,3,7,8-TCDD). It is characterized chemically by the
presence of two benzene rings connected by a pair of oxygen atoms. Whether going by the
name dioxin, benzene, or TCDD, it is a highly toxic chemical, and a putative diseasecausing agent. As dioxin is a compound of benzene, the words will be used interchangeably
in this discussion (21-23).
Benzene and many similar contaminants are retained in some body tissues for a long time
(even decades), so target organ exposure continues even after external exposure ceases.
Even a brief external exposure, can involve protracted exposure of many organs. Disease
induction, the point at which initiation of the disease occurs (the disease might not be
apparent or detectable at this point), might even occur after external exposure ceases (20).
Dioxin/benzene and its inherent properties have the propensity to stay dormant in the
6 Siebert, D.
human body for decades before symptoms are apparent. Thus, one can clinically
extrapolate his exposure to AO, which has an inherent component of dioxin/benzene,
manifested in MG years later for this Veteran.”

[David S]

Hi All – Follow-up –

My Appeal to the Appeal Denial has been filed and the case is Docketed, as I shared above. Next month I should be able to see where I lie on the Docket and when it might be reviewed. As of today, the decision could be made in as little as 90 days, but it has been said that the review could take as many as 525 days. We are hopeful.

All Appeal docs have been filed including a Nexus Letter from an independent MD/PHD specializing in, among other things, Toxins and their effect on the human body. He also explains how this disease can lay dormant for decades.

The Letter looks very strong and is quite descriptive in how this disease effects me and provides the link between MG and AO and other Auto-immune disorders in Medical jargon with numerous References.

We, our attorney and us, decided when we filed this Appeal, that the best way to address the Compensation Rate was to wait to receive this VA Decision Rating, see what their Rating is and Appeal the Rating Decision if the Rating not appropriate.

This is a long process……

Scott

[David S]

Hi Jerry –

Sorry to hear that you are having some challenges. I watch this Thread very closely looking for actual responses to Vyvgart. I applaud you for trying this drug, and sharing your thoughts here.

I think, taking treatments to try to rid ourselves of this MG thing is a good thing. We are all hopeful.

If it has worked for a year and a half and now, and it appears to be losing effectiveness – You have had those years in a better condition. I think that’s OK too. It is hard to seem to lose ground sometimes. In your case I think you have won.

Long term effectiveness is yet to be determined. I believe Vyvgart claims that it is effective for 6 out of 8 people. You have become a statistical point. 🙂 Hopefully they will analyze the data from all of their patients, including you, and determine why the dosage and effectiveness is questionable. Lot’s of questions there.

Sounds to me, like all of us here, will continue to research possible solutions and work with our Neuros to see what we might try to get better.

I have been considering Vyvgart, as the VA has made it available recently, but think it’s too soon for me.

I thank you for sharing – hope you face easy effective decisions.

Scott

[David S]

As a further note – advertisements take up about 50% of your screen.

[David S]

I have been a member of this forum for a while and will no longer visit or participate due to the Advertisement banner at the top of the page. It covers about 25% of my screen and makes it difficult to see text on the page. I find it most irritating that as I scroll down the Advertisement remains at the top of the page.

[David S]

Diagnosed in 2019 I weighed about 235#.  Feb 2023 I had gained a bit less than 50 lbs. and scaled in at 281.  We tried a variety of eating plans between 2019 and Feb 2023, including low carb and vegan plans with no positive results.  Prednisdone had a great impact on my weight as I always felt hungry. I continued to eat “normal” portions and my calorie intake far outweighed my exercise.

In Feb of this year we started a meal plan that is nationally advertised and am down to 244.  I plan on using this plan and get down to 225 and more after that.

The plan is easy to follow and eat what you order.  The meals are prepared and just use a microwave or frying pan to prepare the meals.  Fresh veggies and fruit are purchased at our local food store to supplement the provided meals.  When I get hungry now, I eat some veggies between scheduled meals and snacks.  This was new as I just ate veggies at dinner time.

The big challenge will be weaning off the Plan and cooking for ourselves again.

We are hopeful that we can continue to manage our weight for a healthier life.

Scott

 

[David S]

Congrats Bob W –

My 2nd appeal, with a Law Firm, has been Docketed which means all of my Appeal docs, including Nexus letter, are due before Sept 30th, 2023.  From there it is up to the VA to review the Appeal Docs and make a decision.  Current review time is about 12 to 18 months.

I originally filed for Service Connection in 2019 and Appealed in 2021 and my 2nd Appeal in July of 2023.

It is a long process.

Scott

[David S]

Thanks for posting.

 

[David S]

Hi D Evans –

Actually the phrase is not 50/50, it is More Likely Than Not.  That is 51/49 or greater.

Neither my VA PCP or Neurologist would write a Nexus letter for me because they did not know.   The law group that has taken my case has a number of specialists that review health records and provide expert opinions to the VA for consideration.  I am hopeful that my Appeal filed by this law group will be successful.

When the VA denied my first appeal that said that I “May” have contracted the disease during my Tour not More Likely Than Not.

Have you filed for Service Connection for you MG?

Scott

 

 

[David S]

Hope all are doing well.

After meeting with my Neuro this week, I have decided to hold off on the Vyvgart treatment for a while.  One of my, and my Infusion Nurses concern is, how quickly can one get the next treatment cycle when the symptoms recur.  The infusion center at Debakey is quite full.  It was approved by the Debakey VA Pharmacy recently so it is available to me.

It appears that it is effective in about 5 out of 8 patients.  Not bad odds, but for me, the 4 week infusion cycle far out ways the 50 to 70 days between treatments.  My Neuro concurs.

BTW – While talking to the Vyvgart Nurse last week she advised that they are working on a one shot treatment.  If it shows efficacy, I asked her to please put my name on the top of the list.

Scott

 

[David S]

I do not find it difficult to chat with others about my gMG.

During my monthly IVIG infusion this week there was a gentleman there that was being treated for Guillain–Barré.   (Three of them this week – very unusual.)

He was quite open and wore a T-shirt  with: “Ask me about Guillain-Barre” on the front of his T-shirt.

gMG has had a great impact on my life, but of it, I am not ashamed.

I try to share what is not happening with my muscle/nerve connections and how that limits my activities.

I find it helpful for others to know why I may not be able to form words, why I walk much slower than everyone else, why I must rest so often, get tremors and other symptoms that I might show.

Scott

 

 

 

 

[David S]

Thanks Bill for your post – update.

I will be starting Vyvgart mid July and am hopeful.

Scott

[David S]

Thanks all.

If any of you would like to update, it would be appreciated.

Scott

[David S]

Looks like I will be starting Vyvgart mid July.  Would love to hear from from you folks currently using vyvgart and how it is effecting you.

Thank you.

Scott

[David S]

Started with Cigs. when I was 5 yo.  Have been vaping and making my own e-juice for the last 9 years.

Scott

[David S]

Hi Shodo –

Sorry to hear you have Ocular but glad you don’t have generalized.

I filed my first claim for gMG in 2019 and was deneid. Appealed and deneid again in 2022. Appealed again, with Attorneys this time, and is now Docketed and pending review by a VA Judge- someday. I understand that these appeals could take 180 to 550 days from date of filing. If you are over 75 they will expedited the claim. I am 73 this year so I can’t do that.

The VA recognizes gMG as a Chronic disease associated with AO but it is difficult to tie the disease to AO and Service Connection after 1 year out of service.

My second denial stated that my claim was missing a Nexus linking my disease to my exposure. The current appeal, with the assistance of an Attorney group that specializes in VA claims, contains a Nexus Letter written by a MD specializing in Neurological diseases. My latest clock started last September. 180 days + now.

Good luck.

Scott

[David S]

I’ve had all Covid 19 shots with little negative responses. I will continue to get thiem.

I think this is a decision best left up to the patient and Dr.

[David S]

https://www.ncbi.nlm.nih.gov/books/NBK554446/#:~:text=Intravenous%20immunoglobulin%20(IVIG)%20is%20a,normalize%20a%20compromised%20immune%20system.

[David S]

Update –

The VA has Docketed my Appeal.  My Attorneys have 90 days to get my documents recorded.  The required Nexus Letter has been completed and am looking forward to seeing it.  From there it’s up to the VA Appeals Board.  I haven’t been able to get timing on this but could be anywhere between 90 days and two years.

We shall see.

Scott