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jaimebpac

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Mar 6, 2009
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Reason
CALS
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US
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PA
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Chalfont
I just posted a recent thread. I recently was seen at an ALS center for muscle atrophy, weakness, fasics. My EMG revealed anterior horn cell disease/MND. All other tests were negative.

They have not given me a definitive diagnosis because it is not easy to diagnose ALS. They want to give me a trial of IVIG.

Has anyone received IVIG? If so, what was your experience like?

Thank you
 
Check the bottom of this page. There are a few threads that may help.

AL.
 
Hi Jaime,
My husband takes IVIG monthly as he is diagnosed with CIDP. He was first given the IVIG in the process of being diagnosed and he did then have a query of ALS. The neurologist said that if he responded well to the IVIG that was a very positive indicator that he did not have ALS. He started with a loading dose of IVIG which was 2 Grams of IVIG for every kilogram of his body weight. So he had to go into a day care unit at the hospital for 4 days for about 8 hours a day and then come home nightly. The product is quite thick and people who take it often have side effects such as severe headaches and almost flu like symptoms after receiving the IVIG. It is really really important to start drinking lots of water a couple of days before gettting your first IVIG, and to continue drinking throughout the IVIG treatment. And most people do what they call "pre-medicate" before they get hooked up to the IVIG. This means taking a benydryl and a couple of tylenol before getting the treatment. My husband doesn't need the benydryl as he isn't prone to any rashes like some people get with IVIG. But he is very prone to the horrific headaches that can occur and the terrible fatigue for a few days. He has found that Aleve (Naprosyn) works the best for the headaches and if he takes 2 before his treatment, and one when he gets home he generally can avoid the dreadful headaches. He carries on with this regime throughout his treatment days. But drinking the water seems critical to avoiding the headaches as well. He has forgotten a couple of times and paid the price. So in a nutshell the IVIG is given intravenously and you just sit in a chair or lie in bed hooked up to the IV while getting the IVIG. You can get up and walk around and go to the bathroom etc. It is no big deal unless you don't know about pre-medicating and drinking water, and we learned it through other patients versus getting this from the neurologist which is disappointing. I guess they haven't suffered from IVIG side effects so they aren't too empathetic. My fingers are crossed that you may have Multifocal Motor Neuropathy or CIDP and that you respond well to the IVIG. Let us know how things go, and best wishes.
Laurel
 
Hi, Jamie-

My husband had 6mo. of IVIG. I shared our experience on the thread "update/input?"
Just go to top of page, click on search and type that in. Hope that helps.

mare
 
Jamie,

I will be praying that you get a good response from the IVIG.
I am from Philly, which 2 ALS specialist did you see?
 
Hi Jaime,
My husband takes IVIG monthly as he is diagnosed with CIDP. He was first given the IVIG in the process of being diagnosed and he did then have a query of ALS. The neurologist said that if he responded well to the IVIG that was a very positive indicator that he did not have ALS. He started with a loading dose of IVIG which was 2 Grams of IVIG for every kilogram of his body weight. So he had to go into a day care unit at the hospital for 4 days for about 8 hours a day and then come home nightly. The product is quite thick and people who take it often have side effects such as severe headaches and almost flu like symptoms after receiving the IVIG. It is really really important to start drinking lots of water a couple of days before gettting your first IVIG, and to continue drinking throughout the IVIG treatment. And most people do what they call "pre-medicate" before they get hooked up to the IVIG. This means taking a benydryl and a couple of tylenol before getting the treatment. My husband doesn't need the benydryl as he isn't prone to any rashes like some people get with IVIG. But he is very prone to the horrific headaches that can occur and the terrible fatigue for a few days. He has found that Aleve (Naprosyn) works the best for the headaches and if he takes 2 before his treatment, and one when he gets home he generally can avoid the dreadful headaches. He carries on with this regime throughout his treatment days. But drinking the water seems critical to avoiding the headaches as well. He has forgotten a couple of times and paid the price. So in a nutshell the IVIG is given intravenously and you just sit in a chair or lie in bed hooked up to the IV while getting the IVIG. You can get up and walk around and go to the bathroom etc. It is no big deal unless you don't know about pre-medicating and drinking water, and we learned it through other patients versus getting this from the neurologist which is disappointing. I guess they haven't suffered from IVIG side effects so they aren't too empathetic. My fingers are crossed that you may have Multifocal Motor Neuropathy or CIDP and that you respond well to the IVIG. Let us know how things go, and best wishes.
Laurel
Hi Laurel,

Thank you very much for your input. I will hopefully be getting the IVIG on Monday (if insurance approves it). I appreciate the great advice- I always get headaches, so I thankyou in advance for the warning. The docs do not think it is Multifocal motor neuropathy because the other tests came back negative (but I can only hope). Did your husband have the same experience with the only positive finding of the EMG?

Very confusing and difficult place to be in for anyone.
I am only 33 with a very energetic 4 year-old boy, so I hope it works just to keep up with him.
Every prayer is appreciated and I will also say a prayer for your husband.

Thanks for your response.

Jaime
 
Jamie,

I will be praying that you get a good response from the IVIG.
I am from Philly, which 2 ALS specialist did you see?
Hi Crystal,

Thank you for your kind words. It is so frightful to be in this situation. I have seen Dr. Brown and Dr. Elman. They said it was to soon to diagnose because it takes a long time and they do not want to diagnose anyone to early because there is no definitive test. Who did you see?
 
Hi, Jamie-

My husband had 6mo. of IVIG. I shared our experience on the thread "update/input?"
Just go to top of page, click on search and type that in. Hope that helps.

mare
Hi Mare,

Thank you very much for sharing your experience. Every bit of knowledge and other peoples' experience helps. I can not thank you enough for your response.
 
Hi, Jaime-

Is that Dr. Elman at Penn? I'm not familiar with Brown, though.
 
OK- My husband sees Dr. Mc Cluskey at Penn, and I can tell you that everyone we have come in contact with there have been terrific. We feel it is top notch and couldn't be happier with the care. And, how lucky for us it is only 1/2hr. commute.

I know this is a scary and difficult time, but you must trust that the dr. will check for everything & anything- they really "fight" to find a diagnosed other than ALS. So yes, it is usual for people to not get a diagnosis for awhile.

The best thing for you to do right now is to TRY - I know that will be hard - but try to distract yourself as much as possible. Keep busy with your little boy; play games, read, go to the park-do all the fun stuff. You don't say if you are married, but hopefully you have someone to lean on. Just don't look into the future yet, (not good to play the what if game) it's not helpful right now. Take one day at a time, and wait and see how each thing unfolds.

I know- easier said than done- but it will get you thru each day, until you have an answer.
Know that I will be thinking of you and wishing you strength; and you can find lots of support & kind words from the members here.
 
Hi Mare,
I loved Dr. Elman at Penn- she works side by side with Dr. McClusky (he is the director, she is the assistant director). She was very nice, and said this was not a clear cut case. I appreciate your kind words. How do you stay sane sometimes. It is hard and very trying. But, I am going to keep on trying and keep your e-mail and when I need reinforcement, I will keep re-reading your e-mail.

Thank you:)
 
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