[David S]

It continues to cause stress and anxiety.   More infections means we have to be more careful.  That restricts our already restricted life.  Not good…..

Scott

 

[David S]

Looks like just about everyone has been exposed to this stuff.  🙂

Nasty, nasty stuff.

https://wwwn.cdc.gov/TSP/PHS/PHS.aspx?phsid=353&toxid=62

I was in Phu bai and Danang.  Agent Orange was heavily used in those areas.  I remember a truck spraying that stuff around our Perimeter and knew the guys spraying it.

Scott

[David S]

BTW – I also contacted a couple of Law Firms that specialize in VA medical claims and was advised that there is no precedent stating that Agent Orange caused or can cause MG.

Scott

[David S]

Good day all –

Thank you for this post.

I am a VietNam vet and filed for additional disability for MG based on Agent Orange exposure.  I currently have 20% disability for hearing loss.

My claim was denied.

I did quite a bit of research into veteran’s claims and  found a number of settled suits that included the claim that Agent Orange caused their MG but were denied because objective evidence as to causality was not linked to MG, so the claims were denied.

During my review of this potential problem, I was unable to find out how many VietNam vets made this claim and how many were denied.  The records are not available for review.

Regarding those that think a chemical exposure caused their MG,  has any chemical company acknowledged that their chemical caused this disease?  Has any government body acknowledged that chemical exposure caused MG?  If so, what chemical company and which govt. body?

I would be most interested in any data that shows that MG can be caused by Agent Orange.

Again, thank you for your post.

Scott

 

 

[David S]

Hi Amy –

Not to Hijack this thread –

There does not seem to be any connection that the VA recognizes between chemical exposure in VietNam and MG.  Only recently has the VA approved Parkinson’s as coming from toxic exposure in VietNam.

When I was first aware of MG before I was diagnosed, I started looking into this and could never find a connection.  Lots of questions but no connection.  I even researched settled law suits that tried to prove that there is a connection.  Unfortunately none of the suits settled could establish that connection.  Maybe some day.

Regarding Riches comment – Lord only knows how this thing got into us and from where.  🙂

Scott

 

[David S]

Hi Jack –

All of my medical needs are provided by the VA and includes eyeglasses and hearing aids.

We moved to Houston, primarally, due to the medical support here.

I also have a PCP under Medicare. He is aware of what is going on and is ready to refer me to a MG specialist not with the VA. My VA Neuro primarally treats ALS and MG.

My tour in Viet Nam and ear damage makes me a Disabled Veteran and helped with my Priority level.

You might consider contacting the VA to determine eligibility. This won’t help you today or even this month but, if available, … it doesn’t hurt to look into it. You might be surprised.

Scott

[David S]

I might suggest you – do what you think is right – and maybe find another MG Doc. Tout de suite. Be steady.

I timed my 3rd shot halfway between my IVIGs *every 4 weeks). I continued on my Imuran, Prednisdone, Mestinon. Did not feel any discomfort and have not requested a test to verify immunity. The percentage of efficacy is not important to me. We are being quite cautious and always wear masks when around people. Any assistance from the shots are appreciated. My Neuro said that there is nothing in the vaccine that would kill me. He also said that there are not enough people like us, with MG, that have gone through this to be able to tell us how much of what we should take to not harm our selves.

I think different people think different things about whether or when to take this shot.

I think many have had it, so it might be expected, to have a variety of responses. To my eye, as warped as it is, NOT many have had bad feelings after their 3rd shot.

Good luck and good health,
Scott

[David S]

Thanks for posting –

Just a couple of thoughts –

I usually email my Neuro once or twice a month with a question here and there.  I have not tried, but believe, if I had to talk to him he would be available.   It might take 24 hours but he would get back to me.

Sounds to me like you need treatment,  Mestonin may help you lots.  You should be taking your dosage.  If Prednisdone is not available to you, is there nothing else that you can take?

Put a call into your Neuro and explain to the nurse what is going on with you, and request assistance.  Do you have a physician that you can contact regarding your symptoms?  They might be able to provide a Rx for muscle twitching and stuff like that.  My PCP is well aware of my MG status and would/could contact her for help.  She has Rx’d me to reduce muscle cramps as well as calming agents.

Stress is not good.

Take care,

Scott

 

 

[David S]

Had my third shot yesterday.  Moderna.

Also having no side effects except a sore spot at the injection site.  Both my docs., PCP and Neuro suggested I get this shot.

I am on Imuran, Prednisdone, Melatonin and monthly IVIGs.  We tried to time the 3rd shot between my IVIGs.  I do not know how effective the shots are/were but am trying to keep my distance and wearing a mask.

I am hopeful.

Scott

 

[David S]

Good day –

I also am receiving good care from the VA.  Great PCP and Neuro.

I have a Rx for Baclofen 25 mg.   My PCP wrote this script. I only use it when my legs are crampy, tingly and uncomfortable.  Usually one does it and I go to sleep.  I have not used it during the day as the leg issues usually occur in the evening.

I have always struggled with trying to describe and quantify the severity of the “Flare”, especially for me.

My understanding –   What Ari experienced above, would be labeled as a “Myasthenia Crisis”.  A “Flare” would be the exacerbation of the typical/untypical symptoms.  IE: Double Vision and such.

A Flair for me would bring on rapid breathing/difficulty breathing, extreme fatigue and the Mestinon Sweats.  These occur maybe a few times a day, maybe more.   Usually brought on by me overdoing physically or when I experience emotional stress.  When I do gardening and light lawn care, I work to the point of shortness of breath, heavy sweating and a heavy feeling of fatigue – just can’t move.   My work periods usually last for 15 to 20 minutes at a time.  I will cool off, hydrate, and rest for 5 to 15 minutes and do it again.  The hard thing for me is understanding when I go over the line.  When this occurs, for me, I may or may not have any increasing symptom severity until the next day.  The last time this happened, a number of weeks ago, brought on the dreaded DV (Double Vision) and that was the first sign that I had over done.  This along with increased severity of the general symptoms got my attention.

My medication regimen includes Prednisdone.  I had reduced my usage from 20mg/day to 15mg during this time in an effort to wean down to 10mg every other day..  I felt I could temporarily increase my Prednisdone to 20mg and this increase would probably reduce my DV and other symptoms.   I took 20mg and contacted both my Neuro and PCP.  I did check my vitals.

I took another 20mg the next day and then reduced to 15mg the next day and  I am now down to 10mg/day.  After my Prednisdone increase to 20mg/day my DV was back to normal (I always have some).

I would classify my above experience as a Flare moving to Crisis.

I do not know how to quantify the severity of what I would call Pre-Flare events.  I think these Pre-Flare events happen numerous times a day – maybe.

Sorry about the ramblings…..

Scott

 

 

[David S]

I have a handicapped placard and use it.

It is hot down here in Houston, especially in a parking lot on a sunny, humid day.

The placard allows me to get from the truck to the store, with some energy left to walk through the store and shop.  Before I had the placard and we parked out in the lot, quite often I would be so fatigued by the time I got to the store that I could not make it through the store.

So I do use mine and am grateful that I have it, otherwise, I would not venture out as much.

Scott

[David S]

What  a Horror Story –

Our Opthamologist in Cottonwood, Wa., gave the name first.  He couldn’t diagnose but did provide a direction.

At that time, we were 3 to 4 months out to see a Neuro either in Phoenix or in Houston.  We headed to Houston and the following Monday we were at the local VA clinic, bright and early, and sat there until we were seen by the On Call Doc for  the “Sick Bay “Doctor.  We waited a couple of hours and saw the Doc.    After this meeting we saw my Neuro within two weeks.   My PC did prescribe some meds to calm me down, as I was was quite agitated and “Insistent” upon getting some answers and hopefully action.   She took about 4 gallons of blood in the next few days and a number of other tests.  (We did have my complete medical records with us.)

In retrospect,   During the time that I was experiencing severe symptoms , we were in the ER 3 times and never went into Crisis and my symptoms seemed to recede, so after a couple/three hours per visit I would be released.  Always with more tests.  We tried to stay busy and not to take to much time worrying about it.  I knew I wasn’t dead yet and this MG thing probably wasn’t going to kill me, so my time was directed towards researching this disease/disorder to try to figure out which way I should be going and what I needed to do next.

The Neuro took more tests and prescribed mestinon and the IVIGs began.

I did experience a bit of denial today though.  My wife and I have been looking forward to getting away for a bit.  After taking consideration of our options and my limitations, we decided that a cruise would work.  We found a nice cruise last night. Not too long, not too short and there were some interesting things to see along the way.  We decided to make the reservations this morning.  This AM on the TV we saw the spiking of Covid 19 in the Houston area and there happened to be a number of infections on the vessel we were considering.  We reluctantly agreed that this is not a good time for an Immunosuppressed human, me, to travel especially not knowing  if the Vaccine is effective.

Sorry to have rambled on…..

or if my comments drifted away from the original topic.

Scott

 

 

 

 

 

[David S]

Good day all –

I have been IVIGing for about two years now.  I hate IVIGs.

Early on the treatment was monthly.  After a number of treatments I requested the 3 concurrent treatment days every 2 months in an effort to have more time between treatments so we could do some travelling.

Since beginning this treatment I was unsure as to it’s effectiveness as I felt no improvement after the IVIGs and felt no need before the scheduled treatment – either on the 30 day schedule or the every 2 month schedule.

In Feb of 2021 I completed my last 3 concurrent treatment every two months and requested to my Neuro that I skip the next treatment as I felt no improvement from the IVIGs.  He agreed.

I met with my Neuro in April, and based upon my condition he suggested I resume these treatments.  During this Off Time I overdid physically and started to again experience severe Double Vision and increased my Prednisdone to get my eyes back in order.  Also during this Off Time I decided to use use a cane to improve stability.

So I am back IVIGing every 30 days – .

For me the IVIG side effects were non existent.  I felt no better before the treatment or after so I assumed that they were having no effect.  I guess I was wrong.  Since I have resumed this treatment my cane has stayed in the corner by the door.  My wife also agrees that the IVIGs help stabilize me.

I get my health care through the VA. and get my IVIGs at the VA in Houston.  I have no complaints.  They have been responsive and feel I am getting good care.

Current med treatment –

IVIV every 30 days

15mg/day Prednisdone.  Will wean this back down to 10mg/day next month.

50mg Azathioprine 3 times daily.

2 – 60mg Pyridostigmine-  2 times daily.

1- 180mg slow release Pyridostigmine every evening.

Scott

 

 

[David S]

When I was diagnosed about 2 years ago, I knew something was wrong.  DV was my first Big clue.  I had been experiencing fatigue but chalked it off as Old Age – 67 at the time.

Any way,  DV kicked in hard, then extreme fatigue hit, and I was becoming disoriented.   My wife drove to the closest VA medical facility and our diagnosis trip started.  That lasted about 4 months until we saw a Neuro.  Then came the Treatments and their effectiveness trip.  Still working on that one.

I don’t think I was in denial for a period of time, I think I skipped that phase.  I knew something was wrong, and felt it was either brain issues or nerve problems.  Either case I figured I had it.  Then it became a matter of what to do about it.

Many days bring times of wishful thinking, that sometimes seems borderline denial.  I think we all have it.  It depends more on not whether you have it or not, it is more how much time do you spend thinking about it.

Sometimes I think my MG is kinda like my friendship with Bill W.  Both leave lasting changes –  good some not so good.

I try to stay as busy as I can.  With help, I take care of the lawn and gardens.  I have some hours using my Flight Simulator, and husbandly duties occupies the rest of my days.

I wish that we were up in the mountains of New Mexico right now, but we can’t be, so we aren’t.  Just trying to do my best today and some days are better than others.

To answer the OP’s topic:  How did you react when you were first diagnosed with MG? Did you feel relief, anger, sadness, or some other emotion?

I think felt them all.  And still feel many today – hopefully not at the same time.  🙂

Scott