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Today sucked. - Update #201


BlsdMama

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Thinking of you today as well and hoping for all the best. I am certainly not an expert on ALS but as a paramedic I have cared for patients with it, since in the advanced stages they can only leave the house by stretcher. I don't mean to downplay the horribleness of it, but wasting away like cancer or dementia is not necessarily the end result.

 

You're welcome to PM me and I can share details I won't necessarily put on an Internet forum.

Edited by MedicMom
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ALS is not like dementia.  Steven Hawkins has had ALS for decades.  He had it when I was in college in the early 80s.  My mom was diagnosed with ALS when I was in my senior year.  We got married before my dh's senior year because I wanted to have my mother at my wedding.  ( My dad had died when I was 13).  My mom was very weak at the end but she still enjoyed being with her kids, having her cat by her, and for when I took her out to visit a pretty garden very close to her death.  She died from pneumonia as a result of the ALS.  Steven Hawkins is still alive and working all these years later. I would want you to seriously reconsider things like feeding tube and other necessities that may occur if you have ALS.  It isn't the same at all like wasting away from dementia and as MedicMom has said, she has met people who are surviving for many years.  I think the greatest gift I have given my kids is my chronic diseases and infirmities.  It has helped them cope with issues as adults and has made them into very compassionate people who are always ready to help others.  It made them more independent.  It gave them more self-confidence.  

 

I really hope this is Lyme disease and do not see any reason why someone wouldn't prescribe you the doxycycline even as a lark.  So definitely pursue that but also start planning for your family if the disease does not go away be it ALS, Lyme disease that isn't amenable to treatment, or some other motor neuron disease.

 

 

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I think that one of the best things about Well trained mind forum is how supportive we are all about others.  Yes, we are all pulling for you and so many of us are praying for you.  I hope that gives you some small bit of concolation.  I know when my one child was having serious medical problems,  i really did feel better knowing how many here were pulling for her to get better.

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ALS is not like dementia.  Steven Hawkins has had ALS for decades.  He had it when I was in college in the early 80s.  My mom was diagnosed with ALS when I was in my senior year.  We got married before my dh's senior year because I wanted to have my mother at my wedding.  ( My dad had died when I was 13).  My mom was very weak at the end but she still enjoyed being with her kids, having her cat by her, and for when I took her out to visit a pretty garden very close to her death.  She died from pneumonia as a result of the ALS.  Steven Hawkins is still alive and working all these years later. I would want you to seriously reconsider things like feeding tube and other necessities that may occur if you have ALS.  It isn't the same at all like wasting away from dementia and as MedicMom has said, she has met people who are surviving for many years.  I think the greatest gift I have given my kids is my chronic diseases and infirmities.  It has helped them cope with issues as adults and has made them into very compassionate people who are always ready to help others.  It made them more independent.  It gave them more self-confidence.  

 

I really hope this is Lyme disease and do not see any reason why someone wouldn't prescribe you the doxycycline even as a lark.  So definitely pursue that but also start planning for your family if the disease does not go away be it ALS, Lyme disease that isn't amenable to treatment, or some other motor neuron disease.

 

 

So, on this.  Steven Hawkins was actually brought up by my neuro on Monday.  He says he doesn't have a single colleague who buys it.  PLS maybe but not ALS.  That wasn't encouraging exactly, but it was an interesting sidenote.  I think my doctor kind of says whatever is on his mind at that time.  #nofilter   I like him.  He's funny, he's warm.  But I do wonder if sometimes if what comes out of his mouth is wondering aloud or what he is really considering.... do you kwim?

 

I want Ceftriaxone or Rocephin and I want a lot of it.  A lot of doctors won't put themselves on the line because it isn't just a 30, 60, 90 days of doxy.  The fact is that a lot of people (including doctors and some quacks) think that chronic Lyme patients need long term and high doses of antibiotics and some patients have died from the treatment.  They put their livelihood on the line too.  I get it.  I do.  If I worked for years to achieve my MD and it was my livelihood, would I put it all on the line for a random stranger? My guess is that most Lyme docs risk it because they have personally been affected and personally seen it work, kwim?

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