Re: Miralax and demyelinating polyneuropathy

[Guest guest]

please read the files section by clicking on visit your group at the bottom of the eSorry to hear this happened to you, I've got to do some research on all your symptoms, glad to hear that they stopped when you discontinued and you found the cause. You also may want to look into lyme disease, your symptoms sound familiar and I know another child who had a bad reaction to Miralax and they had lyme which now I'm studying to see if some of the cases on here had an underlying condition of lyme I attached the drug oversight board meeting as the FDA IS investigating and we're in the middle of a very large citizens petition to the fdathe number of adverse events rose from 7, in 2001 to 2,257 in 2012Jeanie To: miralax Sent: Fri, April 20, 2012 4:10:31 AMSubject: Miralax and demyelinating polyneuropathy

New to this group, hoping to find info regarding possible link between daily long term use of Miralax and my case of "idiopathic" demyelinating polyneuropathy. I have been using Miralax daily, recommended by my PCP as well as gastro specialist. I was reassured by both that this is completely safe, even though the bottle says two weeks. This was 2 1/2 years ago, and I have been using this for chronic constipation. It worked great for the problem, however about two years ago I started developing a problem with shooting pains in my hands, developing thenar atrophy about 9 mos ago. Progressed to atrophy of muscles in my feet. About four mos ago this progressed even further to sensory neuropathy symptoms (tingling,etc) Began to have muscle twitches and fasiculations in legs and arms. Finally after seeing my PCP and other doctors trying to find the etiology, many diagnostic tests, including myelogram and lumbar puncture for CSF analysis, EMG's,

multiple lab tests for heavy metals, etc, it comes down to no etiology found, idiopathic. Six weeks ago, I analyzed all my meds and anything I could be ingesting that could be the cause, and came across some info online about possible concerns with Miralax. I stopped it immediately (6 weeks ago). Lo and behold, my symptoms have almost completely resolved by this point. However, I am in physical therapy to regain the use of my hands and feet. I will probably have permanent muscle loss, my intrinsics in my hands are gone. I feel I have possibly found the cause. Any info anyone can send me to show to my docs would be greatly appreciated. Thanks for all this helpful information!

1 of 1 File(s)

ucm171059[5]._htm

[Guest guest]

just did some looking, I know another parent on here whose child experienced this, I'll e her this so she can respond. They suggest the same gullian barr but I was sceptical as we've heard this before with the use of PEG. It sure sounds like lyme but if they went away after you stopped the meds you could have found your source. If the problem persists, I'd look into ILADS docs if you don't test positive through mainstreamwere you having any urinary issues? what other meds are you taking? there are drug interactions with PEG To: miralax Sent: Fri, April 20, 2012 4:10:31 AMSubject: Miralax and demyelinating polyneuropathy

New to this group, hoping to find info regarding possible link between daily long term use of Miralax and my case of "idiopathic" demyelinating polyneuropathy. I have been using Miralax daily, recommended by my PCP as well as gastro specialist. I was reassured by both that this is completely safe, even though the bottle says two weeks. This was 2 1/2 years ago, and I have been using this for chronic constipation. It worked great for the problem, however about two years ago I started developing a problem with shooting pains in my hands, developing thenar atrophy about 9 mos ago. Progressed to atrophy of muscles in my feet. About four mos ago this progressed even further to sensory neuropathy symptoms (tingling,etc) Began to have muscle twitches and fasiculations in legs and arms. Finally after seeing my PCP and other doctors trying to find the etiology, many diagnostic tests, including myelogram and lumbar puncture for CSF analysis, EMG's,

multiple lab tests for heavy metals, etc, it comes down to no etiology found, idiopathic. Six weeks ago, I analyzed all my meds and anything I could be ingesting that could be the cause, and came across some info online about possible concerns with Miralax. I stopped it immediately (6 weeks ago). Lo and behold, my symptoms have almost completely resolved by this point. However, I am in physical therapy to regain the use of my hands and feet. I will probably have permanent muscle loss, my intrinsics in my hands are gone. I feel I have possibly found the cause. Any info anyone can send me to show to my docs would be greatly appreciated. Thanks for all this helpful information!

3 of 3 File(s)

Lyme Disease Resource-Burrascano.url

Lyme Disease Diagnosis, Testing, Symptoms and Treatment.url

Herx1[1]._html

[Guest guest]

My neurologist has ruled out Lyme disease. The other meds I am on are Mucinex,

Synthroid, Prilosec and Zocor. The Zocor was just started three months ago. I

also take some supplements, such as fish oil, multivits, calcium.

I have a very sedentary job, and spend two hours a day commuting to/from my job.

I am concerned that perhaps the PEG has gotten into my system due to slow gut.

It is strange that this neuropathy has gotten progressively worse over the last

two years, and since stopping the Miralax is now remitting.

>

> just did some looking, I know another parent on here whose child experienced

> this, I'll e her this so she can respond. They suggest the same gullian barr

but

> I was sceptical as we've heard this before with the use of PEG.

>

> It sure sounds like lyme but if they went away after you stopped the meds you

> could have found your source. If the problem persists, I'd look into ILADS

docs

> if you don't test positive through mainstream

>

> were you having any urinary issues?

> what other meds are you taking?

> there are drug interactions with PEG

>

>

>

>

> ________________________________

>

> To: miralax

> Sent: Fri, April 20, 2012 4:10:31 AM

> Subject: Miralax and demyelinating polyneuropathy

>

>

> New to this group, hoping to find info regarding possible link between daily

> long term use of Miralax and my case of " idiopathic " demyelinating

> polyneuropathy. I have been using Miralax daily, recommended by my PCP as

well

> as gastro specialist. I was reassured by both that this is completely safe,

even

> though the bottle says two weeks. This was 2 1/2 years ago, and I have been

> using this for chronic constipation. It worked great for the problem, however

> about two years ago I started developing a problem with shooting pains in my

> hands, developing thenar atrophy about 9 mos ago. Progressed to atrophy of

> muscles in my feet. About four mos ago this progressed even further to

sensory

> neuropathy symptoms (tingling,etc) Began to have muscle twitches and

> fasiculations in legs and arms. Finally after seeing my PCP and other doctors

> trying to find the etiology, many diagnostic tests, including myelogram and

> lumbar puncture for CSF analysis, EMG's, multiple lab tests for heavy metals,

> etc, it comes down to no etiology found, idiopathic. Six weeks ago, I

analyzed

> all my meds and anything I could be ingesting that could be the cause, and

came

> across some info online about possible concerns with Miralax. I stopped it

> immediately (6 weeks ago). Lo and behold, my symptoms have almost completely

> resolved by this point. However, I am in physical therapy to regain the use of

> my hands and feet. I will probably have permanent muscle loss, my intrinsics

in

> my hands are gone. I feel I have possibly found the cause. Any info anyone

can

> send me to show to my docs would be greatly appreciated. Thanks for all this

> helpful information!

>

[Guest guest]

just so you know there is more to the story about testing for lyme than meets the eye. If you're symptoms persist, you may want to research it. Mainstream testing only shows positive 60% of the time that's why Gov Quinn changed the protocol. I'll be glad to explain if you need to know more and you don't get better, hope that's all it was and you get better. Many people are suffering from lyme b/c they messed with the test upon creating it, leaving out very important markers, all over a vaccine they tried to create and failed. To: miralax Sent: Fri, April 20, 2012 5:50:50 PMSubject: Re: Miralax and demyelinating polyneuropathy

My neurologist has ruled out Lyme disease. The other meds I am on are Mucinex, Synthroid, Prilosec and Zocor. The Zocor was just started three months ago. I also take some supplements, such as fish oil, multivits, calcium.

I have a very sedentary job, and spend two hours a day commuting to/from my job. I am concerned that perhaps the PEG has gotten into my system due to slow gut. It is strange that this neuropathy has gotten progressively worse over the last two years, and since stopping the Miralax is now remitting.

>

> just did some looking, I know another parent on here whose child experienced

> this, I'll e her this so she can respond. They suggest the same gullian barr but

> I was sceptical as we've heard this before with the use of PEG.

>

> It sure sounds like lyme but if they went away after you stopped the meds you

> could have found your source. If the problem persists, I'd look into ILADS docs

> if you don't test positive through mainstream

>

> were you having any urinary issues?

> what other meds are you taking?

> there are drug interactions with PEG

>

>

>

>

> ________________________________

>

> To: miralax

> Sent: Fri, April 20, 2012 4:10:31 AM

> Subject: Miralax and demyelinating polyneuropathy

>

>

> New to this group, hoping to find info regarding possible link between daily

> long term use of Miralax and my case of "idiopathic" demyelinating

> polyneuropathy. I have been using Miralax daily, recommended by my PCP as well

> as gastro specialist. I was reassured by both that this is completely safe, even

> though the bottle says two weeks. This was 2 1/2 years ago, and I have been

> using this for chronic constipation. It worked great for the problem, however

> about two years ago I started developing a problem with shooting pains in my

> hands, developing thenar atrophy about 9 mos ago. Progressed to atrophy of

> muscles in my feet. About four mos ago this progressed even further to sensory

> neuropathy symptoms (tingling,etc) Began to have muscle twitches and

> fasiculations in legs and arms. Finally after seeing my PCP and other doctors

> trying to find the etiology, many diagnostic tests, including myelogram and

> lumbar puncture for CSF analysis, EMG's, multiple lab tests for heavy metals,

> etc, it comes down to no etiology found, idiopathic. Six weeks ago, I analyzed

> all my meds and anything I could be ingesting that could be the cause, and came

> across some info online about possible concerns with Miralax. I stopped it

> immediately (6 weeks ago). Lo and behold, my symptoms have almost completely

> resolved by this point. However, I am in physical therapy to regain the use of

> my hands and feet. I will probably have permanent muscle loss, my intrinsics in

> my hands are gone. I feel I have possibly found the cause. Any info anyone can

> send me to show to my docs would be greatly appreciated. Thanks for all this

> helpful information!

>