WHY we need a conference!

Keri holdng Kellyn 5-07Keri most often found the doctors she sought for help, to be “perplexed”, and willing to let it go at that.  Most were not remotely thorough in obtaining or even listening to the history of how she became ill and her many symptoms. In many cases, she had to PUSH for MRIs; spinal tap, more bloodwork, etc. That first spinal tap wasn’t fully tested for all the areas it could have been, so she ended up having 2 more as time went on, followed by intense migraine-type headaches.  She was told she didn’t have MS, MD, ALS, Guillain-Barre, Lyme Disease.  No parasite test was positive. That is because there are only tests available for very a few parasites or foreign bodies. Finally, was told it was a virus, would run a course of of a couple more months, and she’d be fine. This was after 6 months of limping, and she had found out she was pregnant. One month after that, she could not use the leg. 3 months after that, she was using arm crutches for both legs.

Keri went from referral to referral. After hearing “come back in a couple of months if its not better” Keri sent herself to a surgeon, who, although could not find anything he could treat, referred her at the request of her Internal Medicine physician, to one who was willing to go the extra mile.  After his own testing, he referred her to another neuro-muscular specialist, which led to a diagnosis of probable ALS. A year later, Keri died.

Hospitals did not know how to handle Keri.  We found out too late, That ALS patients should not use oxygen, except in some cases. Hospital had put her on oxygen, from NC to PA.  Why did no one know this?  Why were we daily learning things we should have learned months before?  Hospice had not treated a case like this before, but were eager to learn, prompted by their affection for Keri.  Even the hospital with the ALS CLINIC did not know how to administer the new mask provided to Keri by the respiratory company, so we could never leave her for a minute.

Keri’s illness progressed very fast. ALS “Catfish” Chapter worked to educate our family, but serving a large area, they were limited in personnel and time.  We all thought, from the statistics you read, and the suggested treatments to be tried on Keri after the baby came, that she had time to get to the clinics more and make decisions she needed to make.

If you have problems with your diagnosis, or feel you have been misdiagnosed, do not be afraid to pursue this. It was Keri’s and her mom’s opinion, that SOMETHING invaded Keri’s body that for some reason, she could not fight off. It went undiagnosed and untreated, and it became… ALS. 

 IT is VERY important, no matter how much you research and look for an answer, that you seek out an ALS clinic closest to you. They are your best resource for this horrible disease!

There are many wonderful medical professionals that came to love Keri, and helped her in many ways. We all have something to learn, and therefore we owe each other.  With this ongoing conference program, we hope to educate and inform others, so other victims will not endure many of the obstacles KERI faced, as each day brought its own heartbreak. Some of that could have been helped.

During the course of Keri’s illness, she encountered the most frustrating trials in just getting treated and tested.  After the normal procedures, they just stopped looking. When we go to specialists, we expect them to do everything possible for our situation. We put our lives in the hands of strangers, and trust they know and treat to the full extent that their field of expertise provides.  Keri trusted again and again, only to be led down the same path to nowhere.

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