[Riverwild]

This is a link to another board where a person with PML has posted:
http://forums.wrongdiagnosis.com/showthread.php?t=49456

This person's experience is VERY compelling and a good warning for all of us on Tysabri AND for people searching for diagnosis because their signs and symptoms don't fit the norm.

[SallyC]

Wow, River, that was heavy reading.. She wasn't ever on Tysabri, either. Rebif and copaxone and steroids were mentioned. From what she says, she feel that the combonation of those drugs is what led to her PML.

I tell ya, I hate most higher than the Almighty, Docs, who take it upon themselves to not delve into or divulge conditions effecting our bodies. If they had found her PML before it became fatal????????

My advise to all of you on any immune system depressing or modulating drugs is to stop them immediately, if you have a worsening of symptoms and get tested for the JV Virus.....Please..I think it can be stopped if found in time.

Thanks River, for bring this to our attenion.

I will be praying for this brave person..

[lady_express_44]

Great post, RW. Thanks.

So, she was misdx with MS but actually had PML ... then her immune system was compromised more from the MS drugs she took. Is that the crux of it, or did I not read it carefully enough?

Cherie

[komokazi]

Originally Posted by SallyC

Wow, River, that was heavy reading.. She wasn't ever on Tysabri, either. Rebif and copaxone and steroids were mentioned. From what she says, she feel that the combonation of those drugs is what led to her PML.

I tell ya, I hate most higher than the Almighty, Docs, who take it upon themselves to not delve into or divulge conditions effecting our bodies. If they had found her PML before it became fatal????????

My advise to all of you on any immune system depressing or modulating drugs is to stop them immediately, if you have a worsening of symptoms and get tested for the JV Virus.....Please..I think it can be stopped if found in time.

Thanks River, for bring this to our attenion.

I will be praying for this brave person..

Thanks River for the find. Don't be too hard on the Docs as PML was relatively unknown outside of the HIV/AIDS community until it's gained more visibility lately due to drug induced PML from a plethora of different immune system targeting drugs.

[tkrik]

That was truly sad! I cried as I read it.

Thanks, RW for posting that link. It is so worth going through the waiting and testing to be sure of a dx.

[gonnamakeit]

Originally Posted by SallyC

Wow, River, that was heavy reading.. She wasn't ever on Tysabri, either. Rebif and copaxone and steroids were mentioned. From what she says, she feel that the combonation of those drugs is what led to her PML.

I tell ya, I hate most higher than the Almighty, Docs, who take it upon themselves to not delve into or divulge conditions effecting our bodies. If they had found her PML before it became fatal????????

My advise to all of you on any immune system depressing or modulating drugs is to stop them immediately, if you have a worsening of symptoms and get tested for the JV Virus.....Please..I think it can be stopped if found in time.

Thanks River, for bring this to our attenion.

I will be praying for this brave person..

I have been concerned for the people who have one episode of "something" and are put on the DMD's when the diagnosis has not been made.

The drug companies have pushed this scenario to make more $$$ but it may be a real killer for those that start one of the abcr's and yet have another disease. We sometimes have people write about their own experiences of taking one of these drugs for years only to find out later that they never had MS.

This is horribly sad for the woman and heartbreaking for her family. Maybe she will help others who read her story.

gmi

[Natalie8]

I find this story to be very confusing. I thought PML was a very fast moving disease that brought death or disability very quickly. I am not aware of copaxone and steroids causing PML, although I guess she is saying she already had PML when she went on these drugs? But again wouldn't it have moved and multiplied extremely fast? There seems to be something missing here in the story. HIV? Other immunocompromised disesases besides Hashimotos? Is there any way this story can be verified? Whatever she is suffering from it sounds very sad.

[Riverwild]

Originally Posted by Natalie8

I find this story to be very confusing. I thought PML was a very fast moving disease that brought death or disability very quickly. I am not aware of copaxone and steroids causing PML, although I guess she is saying she already had PML when she went on these drugs? But again wouldn't it have moved and multiplied extremely fast? There seems to be something missing here in the story. HIV? Other immunocompromised disesases besides Hashimotos? Is there any way this story can be verified? Whatever she is suffering from it sounds very sad.

Natalie,
I corrected that statement under the post about the last PML patient. It seems that it is a very slow course until it reaches the brain and becomes noticeable.

This person seems to be saying that she had PML and was misdiagnosed. It's possible her immune system was fighting it and that by adding in the drugs she was on, it reduced the effectiveness of her immune system's fighting the disease.

I wonder if that's why they find JCV in blood tests of patients and NOT in CSF, because their immune system is fighting it or keeping it in check?

There's just so much we don't know yet...

I'm on another search for information for this now...

[NurseNancy]

what a sad story.
God bless this person and her family.

and thanks to her for sharing her story.

[kingrex]

Originally Posted by Riverwild

Natalie,
I corrected that statement under the post about the last PML patient. It seems that it is a very slow course until it reaches the brain and becomes noticeable.

This person seems to be saying that she had PML and was misdiagnosed. It's possible her immune system was fighting it and that by adding in the drugs she was on, it reduced the effectiveness of her immune system's fighting the disease.

I wonder if that's why they find JCV in blood tests of patients and NOT in CSF, because their immune system is fighting it or keeping it in check?

There's just so much we don't know yet...

I'm on another search for information for this now...

I'm also unclear on this patient's medical history, as described in her expansive accounts. I think it's important to judge anecdotal accounts by patients, delivered over the Internet, with some degree of caution. Not to say that such accounts are all flawed or intentionally misleading, but patients are not themselves always 100% clear on their own health care matters.

What disturbs me is her assertion that doctors chose not to inform her immediately of her PML. The notion that doctors hide information from patients or are reluctant to give them bad news is just wrong.