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jazzanatra

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Hi,

I started having left left weakness at the beginning of july ..... I also started having problems with twitching and stiffness on my left arm begininning july also ..... i had an emg done about 4 weeks after the beginning of these symptoms and the EMG came back normal ..... i just saw my neurologist a few days ago and he said my left side was not weaker than my right and his whole exam was normal ..... a few weeks ago i started to develop excess salivation .....

how long into symptoms does it take for EMG to pick up ALS?

I also had the mirena IUD placed in march and it seems all these symptoms started about three months after the IUD was implanted.... I have read some things online about people having issues with twitching and excess salivation issues from the IUD, but not necessarily weakness.......

Any comments? Any help?
 
If both your EMG and your neurologist's clinical exam were normal, you should stop worrying about ALS. The EMG is capable of detecting the denervation process that goes along with ALS long before any of us would be physically aware of any problem.

As to the Mirena IUD, you should be consulting with the doctor that placed it. The symptoms that you have may be common in users of the IUD, but they may also need to be reported to the FDA.

Chasing down information about neurological symptoms on the Internet without a trained person to put what you find in the proper perspective -- very risky for your piece of mind and usually not nearly as enlightening as you hope it will be.
 
Can I say YOU ARE NOT ALONE! I have been researching and researching for the past month. I had the Mirena put in back in November and I started with symptoms in Feb this year. I started with nausea, then slurring speech. I now have muscle twitching and weakness in my right arm. I have body buzzing,teeth chattering and fatigue also followed with crying spells and feeling of complete doom! I never thought for one minute that the Mirena could be causing this until I went to see a Natural Doc for a spa treamtent that a client set me up for. After speaking with her I had the Mirena taken out the next day which was last tuesday. Im feeling better today...Not great but better for sure. My thinking isnt as foggy and I have more energy. I havefound soooo many women experciencing the same thing! There is something to this! The Mirena is new and people are now coming forward with symptoms. GET IT TAKEN OUT!

Please contact me via email [email protected] or call 434-774-8534 (bare in mind my voice is still not good!

Michelle
 
Hi Michelle,

I have posted a new thread for you.
 
trfogey - thanks for your response. I appreciate it and is actually reassuring to read what you wrote about the EMG.

Michelle - I gave you a call earlier this morning. If your throat/voice is still bad, I'd love to talk to you about mirena via email. I really think mirena could be the cause to these symptoms.I have read many stories about women thinking they had MS, ALS, their DOCTOR'S thinking they had MS,ALS - all because of mirena.

I had the mirena taken out on monday, still having symptoms, but I have heard from other women that it can take a few weeks post removal for symptoms to resolve. I would encourage you to contact the manufacturer of mirena (i think it's 1-800-bayer) and report your symptoms. I have already, twice.
 
I have seen a few patients with very minimal side effects from the Mirena. The hormone progesterone side effects may be noticeable and I can attest to that. Neurological symptoms? Never, not in using it for patients in over 10 years. The perimenopausal symptoms of fatigue and difficult concentrating are very common. The other symptoms are more explained by ALS. I think it was only a coincidence. Please be careful about misleading others. The Mirena is a very excellent treatment option for birth control and menstrual irregularities. I have also used it for women who have had a history of menstrual migraines and several other off-label uses. I thought my symptoms coincided with an anti-depressant after only taking it for 2 weeks. But the symptoms never resolved. That's a good way to test a medication if it's a side-effect. There have been too many studies on the Mirena in Europe before ever being studied and used in the United States. I'm sure the Natural Doc doesn't have any studies associating the Mirena with ALS. What kind of education does this Natural Doc at the Spa have? Be very careful to believe anyone who has no experience with medications other than someone who has been educated in that field. Millions of dollars go into studies to assure safety of medications before they are available in the United States. I'm absolutely positive that the association with ALS would have been found.

The Mirena is a wonderful option to avoid a surgical procedure with more severe risks. I would answer any questions about the Mirena if you have more. I promise that I receive nothing from this company to support this product. Teresa
 
I have seen a few patients with very minimal side effects from the Mirena. The hormone progesterone side effects may be noticeable and I can attest to that. Neurological symptoms? Never, not in using it for patients in over 10 years. The perimenopausal symptoms of fatigue and difficult concentrating are very common. The other symptoms are more explained by ALS. I think it was only a coincidence. Please be careful about misleading others. The Mirena is a very excellent treatment option for birth control and menstrual irregularities. I have also used it for women who have had a history of menstrual migraines and several other off-label uses. I thought my symptoms coincided with an anti-depressant after only taking it for 2 weeks. But the symptoms never resolved. That's a good way to test a medication if it's a side-effect. There have been too many studies on the Mirena in Europe before ever being studied and used in the United States. I'm sure the Natural Doc doesn't have any studies associating the Mirena with ALS. What kind of education does this Natural Doc at the Spa have? Be very careful to believe anyone who has no experience with medications other than someone who has been educated in that field. Millions of dollars go into studies to assure safety of medications before they are available in the United States. I'm absolutely positive that the association with ALS would have been found.

The Mirena is a wonderful option to avoid a surgical procedure with more severe risks. I would answer any questions about the Mirena if you have more. I promise that I receive nothing from this company to support this product. Teresa


While I don't think that Mirena can CAUSE ALS, I do know after talking to MANY women all over the net that they started having neurological symptoms shortly after have the mirena device placed. Sadly, MANY of them thought they had MS and went through complete workup (ie: diagnostic testing) to check for it, only to find all their tests coming back normal.

Some people might benefit from mirena with no side effects whatsoever, but women should be cautioned that mirena can AND DOES cause a wide variety of problems that the manufacturer certainly isn't going to own up to, but eventually will HAVE TO. There are already several class action suits against mirena and after hearing stories like mine and twinmommies, I will put in my two cents regarding such.

If you're interested in reading countless horrible stories women have experienced, check out curezone.com -- type in mirena and twitching, or mirena and neurological symptoms and you'll get TONS of hits ... along with that, on facebook there are hundreds of women with many similar neuro complaints -- ie: mirena is evil, ban mirena ...... check it out yourself.
 
BTW, after the majority of these women had their mirena removed, their symptoms, over weeks, subsided.
 
We are happy you were interested in our post referring to the experiences WE have had since placing the Mirena. Also I do want to clear up the facts concerning the "Natural Doc". She has practiced for 17 plus years and is qualified to be concerned when the facts are entered. By no means did she advise the removal. She only wanted me to research and see for myself, which I did. The overwhelming amount of women with the exact same symptoms told me everything I needed to know. You may want to refer to the updated "Mirena monograph" put out in May of this year. I can assure you I am not basing my decision about the Mirena I had on a simple notion. It is fact based. The great thing about being an American is freedom of speech and if what Jazz and I posted offended you it was not our intention,however Jazz and I are are not alone in our findings. We were normal functioning women prior to our experience with the Mirena. As you well know it creates hope for us,which nobody in their right mind would take away. There IS something to this otherwise we would not be alone in our findings so far. I'm happy for women who find satisfaction with the Mirena product, however it is effecting women all over the world and shouldn't be ignored. I appreciate your wanting to answer questions concerning it. I have contacted the appropriate people such as the FDA and Bayer. It is indeed something to be looked into. Funny how I believe on page 34 or 41 the Mirena is considered a "biohazard material" and can't simply be thrown in the trash after removal, but we can host this in our bodies? There is not enough info given to women who are considering this device. The complications I was told prior to getting this is that it could get lost or fall out. The only major thing that could happen was surgery to remove it. So I want to thank you again for expressing your positive thoughts about the Mirena. One question I have is...Do you have the Mirena placed?
 
I was one of the unlucky ones who couldn't be helped by a non-surgical option of treatment. But i have used thousand over the years. I placed one for my best friend and would recommend it to my daughter as a form of birth control if she were older. I rarely look up much on the Internet in regards to opinions. I believe that you can find any opinion you want if you look hard enough. I have looked at the studies that have been reported or published before I make any decisions regarding using or prescribing medication.

My intention was not to take your hope away. I would just hate for other women to see this opinion on the Internet and then think they could get ALS from using the Mirena. That would need to be proven before I would make such a statement, that's all. I'm glad everyone has freedom of speech. I'm sure if you looked on the "I hate Mirena" sites....everyone would agree there. But there is also the "I love Mirena site" that has their own beliefs as well. Read the Medical journals and the published data that shows the side effects and risks as well. Those are the studies that have to be objective. It's so hard to understand why we have ALS or how this happened? I could share a list of everything that I've tried to associate with the cause of my ALS but it's not productive. If in 20 Yeats someone does find an association....that would be great, but it wouldn't explain why the Non-Mirena using women got ALS or the Men, or those people who lived before such a devise was produced.

Just for the record, the reason it's considered a biohazard material after it's removed is because it has blood/body fluids on it. I would be sad ton see research dollars go into further studying the Mirena to see if it caused ALS. I would rather it go into trying a newer drug that would help us,

I don't need the Mirena now, I had to have surgery and guess what.....my ALS symptoms started right after my surgery and before my 40th birthday, it sucks not knowing what causes this. I'm not real happy that I have been stricken by the one illness that has no known etiology or treatment options, dedicating my life to helping others by studying Medicine hasn't helped me at all. The only thing that helps me...I have lots of friends that are nurses and doctors. They help take care of me and my kids.

I will still recommend it to all my patients...they still call. And I'll encourage even my daughter to use when she gets a little older.
 
I forgot to add....I bet money that there has not been one documented case of ALS resolving after a Mirena was removed. Just for the record.
 
Just for the record, mirena IUD's resevoir is made up of a silicone composition. There are reports about "motor neuron disease SYNDROME" in women who were initially diagnosed as having ALS by EMG (see below link). These women all had silicone poisoning from breast implants. If silicone in breast implants can cause denervation, I would bank money that the silicone in mirena can too cause denervation, or a motor neuron disease like problem.

KNOWLEDGE IS POWER --->

A MOTOR NEURON DISEASE SYNDROME | Breast Implant Removal | Breast Implants
 
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