Expect what? with ALS

There are many symptoms given for ALS. Keri sat at her computer and read about her symptoms, and decided she could possibly have ALS long before her diagnosis.  However, her case started with pain, which is not typical. Keri never lost her ability to speak, but the bipap’s usage 100% of the time, took away her ability to project her voice. 

Although many symptoms are the same, most victims do not have all of them, nor are any two cases exactly the same.  ALS is determined from the elimination process, over time.  One big problem with “testing” for ALS, is there IS no test, unless you have the gene that is present in many cases of familial ALS.  You go through the standart EMG/nerve conduction study, which says, okay, you have nerve damage.  Why, you ask? Anyone’s guess. They can’t tell you that.  You can request a spinal tap, brain and spinal MRIs, and bloodwork (which only checks for a few known standard viruses or parasites, and then the physycian must specify). 

But for many cases, there seem to be young women who develop ALS during or shortly after pregnancy.  We have come to believe that these women had a trauma of some kind, be it an accident, infection, or virus, that was retained in the body. Then with the total hormonal and physical change process a woman’s body goes through during pregnancy, something gets triggered that overpowers the body’s healing of the previous condition, which has lingered in the body.

I believe that ALS is just that, except in the case of these women, it may not have materialized without the pregnancy.

This is my opinion, based on my daughter Keri, and the women I have met these past 3 years searching for answers.  Feel free to comment to me or prove me wrong. Either way, we’re all trying to find the answer. 

IF WE CANNOT FIND THE CAUSE, I don’t see a cure fast coming.   

Joan R. Brown, Co-founder of Keri’s Crusade

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5 Responses to Expect what? with ALS

  1. Tim Cole says:

    Outstandingly helpful bless you, I presume your followers would certainly want a whole lot more well written articles like that maintain the good content.

  2. Amy Clare says:

    I have lyme disease and have researched it and other illnesses tremendously! It is not often that you find others who agree with me that finding the cause is the only way to find the cure! So when I saw your statement I had to comment. I know of many people who were told they had ALS, MS, Fibro, and many other illnesses. Only to find out they had Lyme Disease as testing is not accurate. So do I believe that dormant bacteria, viruses, parasites and toxins can get stirred up during trauma or a hormonal change? YES I do!! My lyme symptoms came on after I had a c-section with my last child. I have heard many stories of people getting sick after something like this. I really wish more people would question this as I do believe it to be the answer. Finding the cause of your illness can be your cure! God bless this young women and her family! It breaks my heart to see this!

  3. kristin says:

    I was suffering from a stomach infection when I was pregnant and gallbladder stones. After the baby was born I took antibiotics and removed gallbladder and got als that presented with pain first as well, cramps, twitching,weakness,burning eyes. I have been researching as well and there has to be a link between the immune system and als. Your immune system is down from pregnancy coupled with an infection, it happens. My little girl is going to be without a mother as well.

  4. Linda Longhofer-Swarts says:

    My husband was diagnosed 6/16/2010 His journey ended 6/27/2011. He worked with pesticides at a local mill before there were restrictions and precautins for many years 6/2009 he developed cellulitis and had to have surgery, it returned 12/2009. I believe the pesticides and severe infection brought on the ALS. He was in the military but never left American soil. He first saw the Dr. 6/9/2010 and the diagnosis was quick the 16th. I believe it began in 2009. Treatment or lack of is slow and most tell you “There is nothing we can do put your affairs in order and do what you want to do now, you don’t have more than 2 years. Families and ALS patients need to be given more respect and some hope they can help with research. My husband was part of a research program, but we tried to utilize the stem cell program to be harvested after his passing. We were told the program had shut down due to lack of funding. My thoughts are with your family as you continue to educate others on this devastating disease.

  5. Very interesting piece…the first I have read on pregnancy and ALS..thank you for sharing…
    Keri and Jon both diagnosed themselves…and seem to share the joy of living…to this day I wonder why every ALS patient I read about is real “nice”…a Nice person’s disease…

    Bless you and I thank you for sharing Keri’s story…
    Mary Ann
    Jon’s mom

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