I was misdiagnosed!

[Filmmaker]

thank you Laurel! Yes I have atrophy too but thank Go I am really gainging most of my strenght back apprently, I can not run or do any physically demanding activity but I am already very happy with what I have back after years of deterioration! My question is: do you think IVIG really have an effect? Like I said in my case I got better without any treatment and that is what made doctors wonder and change diagnosis I guess. I do not plan to get any treatment for now yet because to be honest I am very disappointed and mad at doctors and this whole system . But if I have to chose, would you advice IVIG or plasmapheresis? How long before one can notice any positive effect?

 

[Filmmaker]

Thank you Laurel! I do have atrophy too but apparently I am gaining strength back! My question is would you advice plasmapheresis or IVIG and why? Also how long before one can see any improvement? IS you husband on IVIG for the rest of his life or what? In my case I got better without any treatment so I am wondering what is really effective and what is not...

 

[Filmmaker]

Thank you Laurel!Yes I have a question: would you advice plasmphersis or IVIG mùostly and why? Also how long before one can notice any potive change?

 

[Filmmaker]

Oh and also, I got better without any treatment so it really makes me wonder what is effective and what is not...

 

[Filmmaker]

and as i got better without any treatment, I am wondering what is really effective and what isn't...

 

[Filmmaker]

oh and as I got better without any treatment, sure I wonder what works and what doesn't...

 

[Filmmaker]

and as I got better without any treatment, what would be my best bet?...

 

[Filmmaker]

As I got better without any treatment, what would be my best bet?...

 

[laurel]

From my husband's experience, he was deteriorating steadily until he received the IVIG. He had to retire as an airline pilot because of CIDP. He could not use eating utensils, turn a key, hold a handle on a bucket, button his shirt, etc. After his first loading dose of IVIG, he almost immediately re-gained some strength in his hand. He still cannot turn a key in a car to start the car without using two hands. I would say without IVIG, he would not be able to use his right hand at all and likely would not be walking. So for him it was life saving. I think plasmapharesis is more specialized and somewhat more invasive of a procedure compared to getting IVIG. Hubby was not offered plasmapharesis since he responded well to the IVIG. He was tried on Imuran briefly but got sepsis within two weeks of trying it and nearly died. In the beginning we had to really fight for him to stay on the IVIG due to its cost, but lately we haven't had to battle for it. If you are improving without treatment, that is wonderful! Triggers for CIDP are still unknown really, but many people do cite an episode of acute infection prior to having CIDP symptoms. Some people have several treatments of IVIG before they have a response. Best of luck.
Laurel

 

[laurel]

I replied Filmmaker but it went to moderation.

 

[wellington]

Hi Filmmaker. Oh my goodness! What amazing news! And - while CIDP is no picnic I'm certain - how wonderful that you are no longer facing a limited future.

I am just very sad that you have had to walk around in recent months with the knowledge of an ALS diagnosis and all it brings. I am so happy for you though. And for those of us without a diagnosis, but desperately wanting one, the message is, 'be careful what you wish for'.

All the very best. It's lovely to hear you are back doing what you clearly love.

Lilly

 

[CGARS]

Filmmaker,
I have followed your story here, and feel at times your anger and frustration.
I'm so happy your hope has been restored.

Your's is a story no one should forget, because it is a true story of hope for us all.

Never give up, and never give in.

Truly somthing the be thankful for. Especially this Thanksgiving weekend.

Cheers,
Casey

 

[Filmmaker]

Hi Wellington and Cgars! Thank you very much for your words of wisdom! This has been an incredible lesson in life for me and I am still of course under shock and happy at the same time. I was certain that I was dying soon and had really accepted it so I am doing my best to get back in life but at the same time feel very grateful and wonder what to do with all this, I know there is something I have to do but still can't figure out what it is and how... Thank you so much everyone!

 

[notme]

Well, gee. I have an idea. Contact the guardian angels and talk to Stu and see if you can make him a film to help support his very noble and expensive efforts.

He almost single-handedly has he.ped dozens if not hundres with ALS with a major portion from his own pocket. His cause needs awareness.

While there are great organizations for things like wheelchairs and all via the ALS association. his small group does things like provides respite care, or pays so domes utilities, or, as in my case, Lori who works with him got me a bipap. If there was ever a worthy cause, his is it.

I can't imagine how CIDP was overlooked for nearly 4 years I. The rule put process. It's a,axing it cured itself. First case of spontaneous remission of CIDP I ever heard of.

I have no extra money, but when I do, the angels will be where mine goes. I set up my Amazon acct for my book sales from my site to all go for ALS Guardian Angels. Now, anyone who buys anything at all from Amazon from my link will be donating 4-6% of that total they spent to angels. I started Authors for ALS, though it hasn't picked up so much yet.

Being able to do film, there is a lot you could do with Stu's footage, I am sure.

Not sure if the docs mentioned it, but just like MS, CIDP can return, so you might want to consider the treatment if they are sure of the diagnosis this time. good luck to you.

 

[notme]

Off to moderation land