Another New Guy

[glfredrick]

Hello all...

Just joined the forum and I'll be doing a lot of reading. My oldest son, Jeremy, just got back from the specialist at IUPUI (Indiana University Purdue, at Indianapolis) where he has a preliminary diagnosis of PLS.

I've already read up some on PLS and know that it is not genetic, not heritable, not passable, and degenerative, but there will be hundreds of questions that come in the days ahead. Conditions so far include loss of muscle function in (mostly) his right side, including arm and leg. Nerve tests indicate no problem with the lower nerves (muscles respond to stimulus) so the diagnosis moves to higher nerve functions.

He has some relief from using muscle relaxers and has actually been able to use his arm and leg some during the day. That is good as he is a mechanic who is operating as a "lefty" though right handed. I'm amazed every day at just how much he can accomplish with just one hand and a foot that sort of balances him... This is even more evident as he works for me in campus facilities and he's a valuable part of our operation, maintaining a fleet of over 100 vehicles and piece of grounds equipment!

His doctor is suggesting a course of treatment where large doses of intravenous compounds are injected to combat an anti-body that showed up in blood work. This is experimental in PLS, but shows promise. The procedure has evidently shown promise in other nerve damage or antibody-related illnesses, and so as the envelope gets pushed new things are tried. We're on board with this, but all this has just happened hours ago, so we have a lot to think about before we press forward.

Jeremy is married, just celebrated his 7th anniversary and has two children who are 3 and 8 months. We are also all believers, following after Christ and praying our heads off. No matter what comes next, we'll walk into our journey and see how it goes.

So, another family joins the fight...

 

[Jellycat]

I am so sorry to hear of Jeremy's diagnosis -but am glad you have found the forum. Welcome. I'll be praying for you as you absorb the news.

 

[glfredrick]

Thanks!

One new development, the IVIG treatment for the antibodies indicates that the diagnosis may not be typical PLS, but rather something that mimics the symptoms. That makes the issue even more rare than PLS, but also offers hope in that, like Stick Man syndrome, correct intervention with a reactionary blood product may change the circumstances.

Meanwhile, however, we're strategizing as how best to approach this issue in regards to insurance coverage, short and long term disability, etc. Like everyone diagnosed with one of these disorders, we're going to fight until there is nothing left to fight, and while we're fighting, we'll pray...

 

[laurel]

Welcome to the forum. I hope that your son receives the IVIG. My husband has CIDP-MADSAM and has been receiving IVIG monthly since 2007. He was a diagnostic enigma for awhile, and had a differential of ALS at one time. He has an atrophied rt hand and forearm and foot drop in the right foot. I'm sure that the insurance issue can get complicated as the IVIG is so expensive--roughly $10,000 monthly for my husband but we are covered in Canada by the government as it is a blood product. Keep us posted on what is happening with Jeremy please.
Laurel

 

[glfredrick]

Welcome to the forum. I hope that your son receives the IVIG. My husband has CIDP-MADSAM and has been receiving IVIG monthly since 2007. He was a diagnostic enigma for awhile, and had a differential of ALS at one time. He has an atrophied rt hand and forearm and foot drop in the right foot. I'm sure that the insurance issue can get complicated as the IVIG is so expensive--roughly $10,000 monthly for my husband but we are covered in Canada by the government as it is a blood product. Keep us posted on what is happening with Jeremy please.
Laurel

I'll keep everyone posted...

Laurel, thanks for the response. Sorry to hear about your husband. I wish that no one had to deal with these sort of issues. His symptoms sound similar to Jeremy's, only right now the atrophy is slight -- starting to be noticeable but just barely.

Has the IVIG helped arrest the further development? Just wondering, as I've not run into anyone else doing this procedure that I can ask.

 

[Zaphoon]

I'm really curios about the anti-body they found in his bloodwork. Can you elaborate?

 

[laurel]

I'll keep everyone posted...

Laurel, thanks for the response. Sorry to hear about your husband. I wish that no one had to deal with these sort of issues. His symptoms sound similar to Jeremy's, only right now the atrophy is slight -- starting to be noticeable but just barely.

Has the IVIG helped arrest the further development? Just wondering, as I've not run into anyone else doing this procedure that I can ask.

Hi. Yes, it seems to have arrested further deterioration. If Jeremy gets to the point of being prescribed IVIG send me a private message. There are tips we have so that he doesn't get side effects. We learned them along the way. Best of luck.
Laurel

 

[pops66now]

Hello glfredrick, sorry to hear about your son Jeremy. I know you will find a lot of caring friends
here on this forum, and some answers as well.
GOD Bless Wayne

 

[glfredrick]

I'm really curios about the anti-body they found in his bloodwork. Can you elaborate?

As soon as I get more details... This is all very new at this point.

 

[glfredrick]

Hi. Yes, it seems to have arrested further deterioration. If Jeremy gets to the point of being prescribed IVIG send me a private message. There are tips we have so that he doesn't get side effects. We learned them along the way. Best of luck.
Laurel

Thanks! Jeremy needs to sign up on the board as time goes on and he starts to have new questions.

 

[glfredrick]

Jeremy started IVIG treatments today. Very intensive for the first week (every day) then tapering off to see what happens.

Hope that there is some result, but the treatments come with their own risks that are almost as high as the potential of PLS.

 

[laurel]

Hubby has been doing IVIG every 3 weeks since 2007. Risks in the literature are scary, but knock on wood my husband hasn't had any problems. It is very important that your son drinks lots of water prior to the treatments and during. It is a very thick viscous substance and those that skimp on the drinking get killer headaches and malaise. Hubby learned that the hard way. Lots of people pre-medicate to avoid side effects ie they will take a Bendryl and a couple of Naprosyn before going for treatment. Hubby did that for awhile, but soon found he didn't get the headaches if he drank, and he never got a rash so didn't need the Bendryl. He drinks lots the two days before treatment and while having it. This works well for most who receive IVIG. My husband saw good effect from his first loading dose which was 2Grams for every kilogram he weighs. He started to get some use of his atrophied hand after day two. But lots of people take a least a couple sessions before they notice changes. The IVIG tended to wear off about a week before treatment when he got it every 4 weeks--thus he gets it every 3 weeks now. I hope your son does well and responds to the IVIG.
Laurel

 

[glfredrick]

The first round of treatments are now finished. No rash, but lots of headaches. Jeremy was able to lift his right leg and swing his right arm on Saturday, something that he has not been able to do for over a year.

We are hopeful...

Note that Jeremy still works full time as the shop manager and mechanic for a campus grounds shop. He accomplishes more with a (so far) 50% disability than a lot of full-bodied persons. There is never a day when I do not greatly admire his courage and "can-do" attitude.

I get the same impression from a lot of folks on the board as well. When I know that they are confined to a bed, using breathing and feeding apparatus, then read their posts and see humor, joy at living, and such expressive persons, I am encouraged, even through the pain. Thanks!

 

[laurel]

That is very good news. Tell him to drink lots of water before and during his treatments. Also, to take a couple of Naprosyn tablets prior to the treatment next time.
Laurel