[Lou Venema]

Hello folks. Thanks for the responses so far. I will be studying what you shared with official documents to see what they promise. I will be getting my first infusion next week so I better start studying up. I will share my progress until I get up to speed. I  am very run down right now so any change ought to be apparent.

Lou

[Lou Venema]

What is a NEXUS letter?

[Lou Venema]

That’s great! Good Luck.

Lou

[Lou Venema]

Fantastic, Guys!

[Lou Venema]

For those who may be interested in getting a Veteran Service Officer to help file a VA claim, or appeal, here is some information to get you started. Amvets are not the only service group to offer assistance and will work much like this article. There services are free.

Lou

https://www.amvets.org/free-help-filing-va-claims

 

[Lou Venema]

Kirsten,

Try talking to a Veteran’s Service Officer as noted in my previous message.

Good Luck.

[Lou Venema]

Good luck, David. Remember the special words  the VA is looking for. Read the docket if you can, quite interesting. Also be sure to get with a VSO from one of the veteran’s organizations. You will need someone to handle the appeal.

[Lou Venema]

I have ebbn doing IVIG for about 8 years and so far no infections. That may be about to change.

I was recently in the hospital for chest pain that was identified as pericarditis. I am working with a doctor to find out why my blood counts are going up and down. I get a chill when he is talking as I hear things like IVIG can cause infection, steroids, prednisone, Lupus, RA and more.

But no infections yet.

[Lou Venema]

I have found a very interesting case that will probably interest our members.

Citation Nr: 1539119
Decision Date: 09/14/15 Archive Date: 09/24/15

DOCKET NO. 11-05 846 ) DATE
)
)

On appeal from the Department of Veterans Affairs Regional Office in Cleveland, Ohio.

This appeal is a case that answers how to get myasthenia gravis as service related. If you can’t find it, let me know and I will send a copy. I found it on the VA website. Contact with a VSO will probably also help.

The VA is no different that the military. Certain words or phrases must be used to establish your point. This is also true in legal proceedings. For the VA, these words are:

1. A Veteran is entitled to the benefit of the doubt when there is an approximate balance of positive and negative evidence.
2. When a Veteran seeks benefits and the evidence is in relative equipoise, the Veteran prevails.
3. that it was his opinion (Personal Doctor) that it was more than likely the Veteran’s myasthenia gravis was related to his military duty.
4. As there is no medical evidence against the claim, and the competent medical evidence of record relates his myasthenia gravis to in service herbicide exposure.

However, these statements from the court record does not mean it would be an easy battle. Most veterans that served in the specified area are also probably eligible for other disability issues and also service-connected ratings.

I know a number of veterans that served with me or during my tour of duty, 67-68. Typical disability ratings are for PTSD, loss of hearing, wounds, high blood pressure, and several others. Check the assumed illnesses caused by Agent Orange since they have been recently updated.  Working through all the disabilities you have attributed to the service and a few appeals; you can start getting some money from the VA.

I would steer clear of an attorney, especially the ones that advertise. Your best bet is a VSO, Veterans Service Officer. I don’t know about all states, but in Indian we have one in every county. Some of those are better than others and they can help you get started.

A second, and better choice, would be to use a VSO from one of the service organizations, like AmVets, VVA, or American Legion. These are free and they will take your case, and if needed, will also handle the appeals. There are the guys that know what they are doing and the VA knows it. If you are near a VA hospital you can find VSOs there too.

I think the most important thing to do is to start applying for disability and get some money coming in, if you haven’t done so already. Remember, if you win your appeal, the payments go all the way back to the date you first filed your claim. I am at 80% which qualifies me a permanently unemployable and qualifies me for 100% disability pay. There is no Agent Orange disability in my profile.

I also found many studies on herbicides like AO and their affect on gMG. Almost all studies that I read found some relationship between the studied herbicide and gMG patients.

Good luck and I hope you can get some help and some disability pay.

 

[Lou Venema]

I recently purchased a new monitor with blue light blocker. My double vision is not affected by the blue light. However, the reduction of blue light does decrease the strain on the eyes, which causes  the double vision. Anything that will decrease the eye strain will help the double vision, to varying degrees.

Lou

[Lou Venema]

Getting a port was the best thing I did! Getting an IV started was beginning to be a real problem.The veins usually used became weakened. Very few IVs started and worked for the whole infusion. Either the vein could not be accessed of the vein would blow and we had to start over again.

I have only had one problem with the port. The end of the tube accumulated a small “flap”. This would not affect an infusion, only the push/pull to verify good vein access. The push worked fine but the pull would close the flap. That was easily corrected and it has been fine now for several years.

I recommend that if need infusions get a port right in the beginning.

[Lou Venema]

You have to keep the doctor in the loop if you are having problems with the treatment. When I started the journey in 2009 I was was put on all the different medications. Luckily I was switched to another nuero team and that made a big difference.

After only problems with the medications was IVIG tested. I had no problems with the first infusion so a plan was put in place. I started at 3 500ml infusions every 4 weeks. After problems were worse again I was bumped to 3 times every 3 weeks.

IVIG handles my problems very well, however, I still have some issues. My vision has changed and I notice it quite often but I learned to change what I was doing or take a rest. If working hard, my vision will go wacky but I can often adjust. The worst is when my energy  just goes away. I have learned to identify when that is happening sooner and make a rest stop before things go bad.

I need to watch what is happening as I do stuff and am aware of warning signs that indicate I need to do something.  Prevention is very important to handling MG. My infusion nurses are great at spotting things and my nuero team is very accommodating.  They are quick to refer me to another group for testing to verify if I have something else happening or if I need to change my routines.

Most doctors are not very familiar with MG. If you are having problems with your treatment discuss it with your doctor. If  necessary, ask for a referral to another specialist for some advice on the problems you are having. Your regular doctor may also be very helpful and may have some recommendation for your neurologist.

[Lou Venema]

I was in VietNam 67-68. I was in the Central Highlands from the coast to Cambodia. The majority of my time was spent with the forward battalion headquarters. We travelled a lot via ground or air. We did a lot and saw a lot. I saw a lot of white stuff being sprayed by fixed wing aircraft  and helicopter. I don’t know if I was exposed or not. I went to the VA for my agent orange medical examination and was found to be clear of anything at that time. I have been treated by VA since 2008 for a number of conditions and have multiple blond tests each year.

Vets should go to https://www.publichealth.va.gov/exposures/agentorange/locations/vietnam.asp for more information. There are also many sites with maps that show where and when agent orange was used. The VA test is the first place to start if you are seeking compensation. There are a number of conditions that have been attributed to agent orange. If you have one of those illnesses and were in VietNam or other associated area you will automatically be considered as service related. If you have not been diagnosed with the assumed diseases you will not service related. It is that simple.

If you suspect that you have MG have your doctor order a blood test for AChR antibodies. 80 to 85 percent of MG patients test positive for AChR antibodies. I was diagnosed with MG in 2013. Once I learned what the symptoms were, I realized I had been having issues with MG probably at least for 10 years prior.

I hope this helps some people trying to get compensation from the VA.

Louu

[Lou Venema]

Now, on to what I have done and now do.

One trick I was told was to do some rapid eye movements, in a circle. That is a short term “cure”.

Don’t stare at anything. It strains the eye and makes matters worse.

To reduce eye strain, and tilt, while working I have different glasses. I have one for computer or model building. I have another for reading. Both of theses are single purpose. They are set to eye tests at specific distances. I also have a third pair for normal uses, distance and near  sections. These are what I use when leaving the house.

IVIG treatments were increased from every 4 weeks to 3 weeks. That has been the most help. That has allowed me to not need glasses during normal days in and out of the house, although I still need help reading.

If I am having tilt issues in the house I can solve that by closing the left eye to get me past the problem. I may have to use glasses for some additional help. The glasses do not help the tilt issue. What they do help with is reducing the eye strain, and thus allowing the left eye to straighten out easier. Closing my right eye will allow the left eye to function “normally” with the tilt gone. My left eye has better vision that my right eye.

I am now seeing a doctor about the droopy eyelids. I am trying to get both eyelids lifted . There typical answer is “Well, if we do that what happens if you go in to remission? There wouldn’t be enough skin to let your eyes close.” They have some medicine they thing may help and we will be trying that out next month.

I am 75 years old and can be crabby. If you don’t like the way you are being treated, or don’t like what they are telling you, get another doctor. Get treated by a neurologist  with MG experience of more than a few patients. Get linked to a nuero -ophthalmologist for eye care follow up. Your optometrist should know one. If you have a training hospital in your state, see if they have someone  in that field.

Be careful with the prescriptions you are taking. Check carefully for side effects, including the ones in the list that are listed with few problems. Every prescription I tried  had some effects that the doctors didn’t know was a problem area. I do have some Mestinon for really bad days or driving on trips.

Sorry for  he long discourse. I hope this helps someone. I realized several years ago that remission was probably not going to happen so I gave up trying all kinds of cures and decided to work around the problems.  Best of luck to you on your future with MG.

[Lou Venema]

I have been diagnosed with OMG for about 10 years now, although I had eye problems much longer that were undiagnosed. I went to an opto-neurologist to confirm the diagnosis of my optometrist.

My double vision was never really understood for quite a while. Everyone assumed that it was typical double vision with  side by side images. My left eye vision tilts about 135 degrees to the left.  Finally after much frustration with my VA doctors I had a warm discussion with  new opto-nuero doctor. Finally it clicked what I was telling him. He had some gizmo that he put over each eye and I could turn dials to get the line exactly vertical and level. Then he measured them and determined the angle. Several others tried prisms to no results. I don’t know if this is the way others have double vision or not. It may be worth effort to have your eye doctor try to duplicate the test.

Once they understood my real problem the treatment changed radically. See next message.

[Lou Venema]

• <span data-preserver-spaces=”true”>decrease in energy – Why does it happen with no warning</span>
• <span data-preserver-spaces=”true”>drooping eyes</span>
• double vision My left eye was the original problem. Now my right eye is stating to twist, just a tiny bit. That means sometimes I see stuff in 3D.

[Lou Venema]

First, I have a question. When people say that they are in the hospital for their infusion, is that as in or out patient?  I’ve have been doing this for 6 years now and it is always as an out-patient.

Moving along, when I first started infusions we received Benadryl by injection and it knocked me hard. My infusions were filled from a storage tank to an IV bag. They were refrigerated, and cold. Sometimes the cold even hurt. Now I get a Benadryl tablet and 2 Tylenol tablets when I first arrive. Then they proceed with the rest of the production. We now get the IVIG in sealed bottles and it is warm. When I first started it took 3 hours and 45 minutes, just for the infusion. They took my vitals every 30minutes by machine. Those hurt. This drawn out affair took away any energy I had left over. Now, if the infusion is brought up quickly, I am out the door in about 2 hours and 30 minutes.

The only problem I could attribute to the IVIG is that is is very hard on the veins and caused havoc until I got my port. Other issues are attributable to the other things; pain from starting IVs, Benadryl making me very sleepy, sore arm where the IV was inserted and pain from the IV when I moved the wrong way.

If you are having problems due to the infusion, tell your nurse immediately! They know what they are doing, what causes what, and how to fix it. That includes problems between  infusions. They will help you understand what is happening and what you need to tell your doctor. Also tell them if your doctor changes anything and see what they think about it.

Being treated at a VA hospital is a blessing. When I get my infusion there are probably 5 or more guys getting the same thing somewhere during my time, plus after I leave. My VA neurologist treats all those other people with 2 or 3 associates doing the actual office visits. My personal neurologist has had about 5 total MG patients in his practice and only one gets IVIG.

Is your neurologist experienced with treating MG to more that just a few now and then? Is your infusion center experienced with MG infusions all day every day? Experience makes a big difference. It also helps that my personal healthcare team personally knows my VA neurologist as he used to work at their hospital. They have made a few calls to him.

If you are not happy with your treatments, find another doctor. MG is a pretty rare disease and not a lot of doctors know a lot about it. See if you can find a teaching hospital.  Call a few hospitals, if available in your area, and see if they can help find an MG specialist. If you have a university with a medical program see if they can help.

Don’t let the doctor practice on you. I see a lot of people are on prednisone. I had a few doctors at the VA complain to me about how my doctor should be using that instead of expensive IVIG. I told my doctor I didn’t want it and that was that. He agreed with me, by the way.

Good luck to you all on your journey. May you all be blessed with healing and a return to normal life.

Lou

[Lou Venema]

Another step done and probably another check mark on  the disability list.

[Lou Venema]

Hello Randy. I was at the Newport chemical facility from 2003-2008 when they finished VX neutralizations. It was there that I figured out something was wrong because I tripped so much walking around the plant. My eye doctor suspected mg and the opthamologist confirmed it. I was working on a claim anyway with VA so was referred to a neurologist there and have had treatment there since.

[Lou Venema]

Having a port blocked is necessarily a reason for replacement. I have had my port for 8 years. I was having blockage problems for a while.

The practice at the VA is to remove the infusion tube, then do a push/pull and then finish the flush using saline. That is followed by a flush with heparin.

Sometimes during a blockage they could use a different medication for an initial flush, letting it soak for 15 minutes. Usually that would clear it up.

What did the treatment center say about the blockage? This is how the notes on my visit are shown:

Port A Cath De-access
Access Site:Right
Blood Return:Yes
Flush: 10ml Normal Saline, 5ml 100 units/ml Heparin per order
Non-coring needle removed: Yes
Dressing: 2X2 and Tape applied
Patient tolerated procedure: well”

I have learned after all these years to speak up, don’t take no for an answer and question everything that I don’t clearly understand.

Good luck on your replacement.

Lou

 

[Lou Venema]

Tim, I get to the clinic about 8:15.  Say Hi when they check me in. I put my stuff in my chair down at the end and hit the head so I am ready to accepth the infusion.  See you Wednesday.

Lou Venema.

[Lou Venema]

I

[Lou Venema]

Ann,

What problems did you have with amoxicillin? Last March I had some amoxicillin for an infection. Within 2 hours I was vomiting, diarreha, very rapid pulse, very low blood pressure, and couldn’t breath. I was taken to the ER in an ambulance.  I received 4l  of hydration, some other stuff through my IV port and my kidneys were shutting down. Very scary.

Lou

[Lou Venema]

Tim, You will bless the day your port was installed. I went about a year on needle sticks. It was so bad the IV team couldn’t get a needle in to hold up. One day 7 people tried before one got a needle in through my hand.

<b>The needle would hit a good vein. Mostly the push/pull with the syringe would work but one th infusions started it would blow out he walls of the vein. After that day I had my neurologist  order the port. My next round of infusion worked wonderfully. Almost every time the port is accessed on the first time.  The port is also good to do blood draws from. I get them done the same days os my infusions.</b>

I am scheduled for my next round at Roudebush next week 9/27, 28, and 29. Maybe I’ll see you there.

 

h