[David S]

The heat is hard on me too.

Here in Houston the temp is moving into the 90’s.  So I will mostly stay in a/c and do any yardwork early in the mornings.  Shopping during the heat of the day, between 11am and 6pm is tough.  My handicapped placard is a big help.

Our Son has a nice pool but soon it will be too hot for me.

Scott

[David S]

My PCP has prescribed Hydroxyzine to reduce anxiety and help with sleep.

Scott

 

[David S]

I’ve been using tobacco products since I was six yo.  Cigs, cigars and pipes for a while.  Stopped cigs. about 9 years ago when I switched to vaping with a mod.  The amount of nicotine I take equates to 1/2 pack of Marlboro Lights per week.

Started smoking pot when I was 13 yo.  Stopped for many years during business and child rearing days.  Started pot again about 3 years ago after I became ill and before I was diagnosed.  I found it to brighten my day.  Just a couple of hits about 4 in the afternoon and again about 9pm.  I checked with my PCP and Nuero after I was diagnosed to check for possible medicinal conflicts.  Neither approved in it’s use but have accepted it.

S

[David S]

I too will add my experiences if you wish.

S

[David S]

Looks like the stars are getting into alignment for me with Vyvgart.  Debakey VA Hospital has approved some for use.  Their first infusion was today.

If I do start it, it won’t be until mid July due to IVIG scheduling and our travel plans in early July.

I am most interested in all of your responses and hope that you will continue to give updates.

I remain hopeful.

[David S]

Had my left eye done last Thursday.  The change is remarkable.

Blurriness is gone.

[David S]

Hi Paul –

Test procedure – https://myasthenia-gravis.com/clinical/emg-testing

They do test the eye test numerous times to determine muscle recovery time.   It was not pleasant but it was a necessary test for my doc to make my MG diagnosis.  My previous blood test showed AChR Positive.

For me, DV changes from day to day, from time to time.  Mine affected the 4th nerve in  my left eye and was diagnosed as 4th nerve palsey.  These nerves are quite delicate and are some of the first nerves to be effected by MG.

Scott

[David S]

Thank you for the explanation.

[David S]

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 most part.  Others require more.  I am still taking 10mg/day.

Good luck.  Try to keep your stress and emotions under control.

[David S]

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

[David S]

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 after release from service to qualify for the presumption of service
connection. (38 CFR 3.307, 38 CFR 3.309)

3-The medical record shows that you were diagnose with myasthenia gravis in 2019.
4-The evidence does not support a change in our prior decision. -Therefore, we are confirming the previous denial of this claim.

5-Favorable Findings identified in this decision:
You have Vietnam Service from March 2,1971 through September 3,1971. Therefore, exposure to Agent Orange is conceded.
6-The claimed disability is a chronic disease which may be presumptively linked to your military
service.

-Myasthenia gravis is a chronic disease subject to presumptive service connection.
-You have been diagnosed with a disability. You were diagnosed with myasthenia gravis on August 14, 2019.
You have sufficient service to meet the minimum requirements for presumptive service connection. You served 90 days or more during a war period or after December 31,1946.

The VA has acknowleged that I have MG and there is a presumptive Connection to my service in Vietnam but Denies the claim because it did not manifiest itself to 10% within 1 year from date of discharge.

You might see conflicting statements:  Paragraph 1. ..scientific and medical evidence does not support the conclusion that the condition is associated with herbicide exposure.  Paragraph 5:  The claimed disability is a chronic disease which may be presumptively linked to your military service.

So  Nexus letter might state…”Neurological disorders, due to herbicides/Agent Orange do not always expose itself within the time period allowed – 1 year after discharge.  The statement must be supported by scientific papers and studies from professional people.

I guess we shall see what they have to say.

Scott

 

[David S]

Thank you Karen for your response.

Scott

[David S]

“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 “more likely than not” got the disease from exposure to Agent Orange.  Most Drs. are not aware of the studies and cases, so they can not make “the” statement in good conscience.  Neither my VA PCP or Neurologist was willing to make that statement.

These letters are supposed to be written by professionals/experts after a complete review of the medical records and the patient.

In my case the Appeal was Denied because I did not have this letter.  I supplied a couple of studies from the NIH that showed linkage between herbicide exposure and gMG, but the Regional Office did not accept them because a Dr. did not say…”More likely than not this patient got gMG due to the Agent Orange exposure”.

Scott

 

[David S]

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 has won like cases.  They have numerous relationships with medical professionals that can write a Nexus Letter if they feel it’s necessary.

I have one more firm to hear from before we make our decision as to representation.

The attorney that we talked to answered all of our questions and understood the process.

Their fee:  20%.

Scott

[David S]

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 they can fly me off the ship.  All of the Ports of Call have hospitals and I keep my Medical ID on my wrist and also the Forbidden Drugs List in my wallet.  My DW will also be by my side.

The biggest challenge I have is determining when I physically have overdone, as I often do not realize my level of fatigue all of the time.  On our last cruise, I overdid, and did not realize it until b-fast the next day when my speech was very bad, was experiencing hand tremors and felt generally lost.  We cancelled our excursion for that day and spent it by the pool, in the shade, reading and talking.

I take my meds, eat the best I can, try get a good nights sleep and try to get some exercise every day, which is tough some days.   We get to see some places that we have never seen before and eat some good food and get exercise.  We have plenty of time to rest.  Everything I do here, I can do cruising.

One big challenge will be the 4 hour flight from Houston to Seattle this summer.  I’ll take one or two hydrazidines, a couple of  Imodiums and sleep my way there.  I hope.

So no, I do not consider myself brave.  I am trying to live my best life while having gMG.

Scott

 

 

 

 

[David S]

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

 

[David S]

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 letter.  I did supply documents from NIH that states that herbicide exposure does cause neurological disorders but to no avail.  I do not understand.  Neither does the VSO but says that a letter is required.

Sooooo….

My VSO said I should sign up for the Agent Orange Registry.  They might provide the letter.  More tests and exams.  ARGH

I have contacted my local VA Environmental Health Coordinator, who controls the Agent Orange Registry to find out what I need to do next.

I also contacted my VA Neuro and he is not sure whether or not he can write such a letter.  I meet with him next week during my monthly IVIG and will try to get clarification from him.

I have also contacted the VFW asking for help/guidance in this matter.

In the meantime I’m discouraged and depressed but am continuing to move along.  Such a hassle.

How can anyone say:  “More likely than not”?  How does one find a Dr. that might pen such a letter?

My next step may be to contact an attorney that specializes in VA Disability Claims for assistance.

Scott

[David S]

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 places in the Mediterranean that have been places of interest to us for a long time.

We did not realize that for a relatively small down payment you can pay for your cruise monthly, to the cruise line, and pay off before you leave.  Travel insurance is also available that allows one to cancel for any reason and get your money back.  It also has a $50,000 emergency air transport benefit, if required.  Yes it is a bit more money, but we feel more comfortable if we have to cancel because of my gMG

We are now looking for our next adventure place.

We started with a short cruise 5 nights to the Caribbean, out of Galveston, and decided that there are a lot worse ways to spend time.  Yes, it does cost some money but if managed it is be possible.  For us, it has worked.

There are a couple of things about cruise ships that work for me.  Lots of bathrooms and chairs.  (Two of my basic needs.)  🙂   The food is good and there is usually something different to see about every day.  We are always able to find places that are not over run with people where we can sit and look over the rail, and read.  Also people watching is interesting.

The process of learning about the vessel routes in relation to what we have not seen, how to get there and how much it will cost has been occupying a portion of my time.  I also fly a simulated airplane all over the world.  XPlane 12.

The ship’s Hospital/Clinic have ventilators and all of the basic stuff that can keep me alive until they fly me out.  Yes, it is a risk.

My physical capabilities are drastically reduced due to this disease, but have found that we/me can do as much or as little as we please or are able while on the vessel or on shore.

We live in Houston, so a flight to Seattle  and back this Sept. is necessary for us to take Alaska cruise.  I do have concerns about this flight and have some Hydroxyzine to back me up.  This is the trial flight as we will also sail out of Ft Lauderdale and then out of Rome for our 50th Anniversary.

We are getting up in age, and taking into account of my condition, we have decided that either we do, and try to do, or sit in our chairs.

I apologize for my rambling and long post.

Scott

gMG since 2019

 

 

 

[David S]

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 desert valley.

Travelling North out of Phoenix you must take I-17.    This road has pretty  a steep long grade and lots of twisties.  Trucks often slow down to 20 to 25mph going up that long grade on this Interstate Highway.

About 1/2 way up the grade I got severe double vision in lots of traffic.  I made it to the campground, using one eye only, and hooked up electricity and power to the coach, then told my wife.  We left immediately for the VA Hospital in Prescott, AZ and was diagnosed with 4th Nerve Palsy.  Went through a bunch of tests and they released me.  At this time I was also experiencing extreme fatigue and a general out-of-body feeling. I was diagnosed with severe siusitis althugh my sinuses were clear and given antibiotics. Less than a week later, I again went into the VA  ER due to again extreme fatigue and a feeling that I was watching life go by in slow motion in real time.  I also developed speech issues when stressed along with hand tremors.  Was wearing an eye patch by this time.  I again was released after some more tests and IV. being told that I was most likely having a mini-stroke. The ER told my wife to call 911 if my symptoms worsened, as I would most likely be having a stroke..  During this time I was also seen at the local Hospital ER.  Was seen by a neurologist who said I most definitely was NOT having a stroke and who sent me home again.

About 2 weeks later, I again went to the VA ER and again, was released after a bunch more tests.  Interestingly, with rest comes a bit more normalcy and the extreme fatigue, tremors and speech fade somewhat.

I got a referral appt. from the VA for a local ophthalmologist.  He was the first one that put the label MG next to my name and suggested that I see a Neurologist ASAP.

I could not get an appointment either through the VA or my then civilian health insurance, in less than 4 months.

Long story shorter, so packed up and DW drove from Prescott, AZ to Houston, TX.  The following Monday morning I presented myself to my PCP during Sick Call at my local VA Clinic.  She scheduled blood tests and made a referral to a VA Neurologist two weeks+/- later.

More tests including EMG and I was diagnosed.  My medical file grew to about 3″ thick.   That was 2019.

Still undergoing treatment with Mestinon, Imuran, Prednisdone and monthly IVIGs.

During the time between the onslaught of MG and my diagnosis, we discovered many Neurological disorders that could account for my symptoms.  We were eyeing Parkinson’s , MS. ALS,  MG and others.

Scott

[David S]

I did not know there is such a day.  In this case Ignorance is Not Bliss.

I’ll look into it.

Thank you,

Scott

 

[David S]

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

[David S]

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 also comes with me.

All procedures went well.  Am having another crown and a Partial.

I remain hopeful.

Scott

[David S]

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

[David S]

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