Before 2013, Lula* was living a happy life. She was an active, lively person who loved being outside. She was a hiker, a gardener and had just gotten married, life was pretty great.
But one day, Lula woke up and realized that her feet had gone completely numb, she couldn’t remember the last time she had felt them.
This numbness eventually progressed into extreme pain: a blister had formed on her foot and had worked its way up to the nerve. These symptoms eventually evolved into a constant burning sensation on the tops of both feet and spasms of pain along both arches. Walking became difficult to near impossible and it got to the point where the pain made it difficult to even sit or lie down for long periods of time.
Slowly but surely, these symptoms became more debilitating and lead to Lula’s eventual layoff from work as she could no longer physically make it in. Lula had gone from extremely active to extremely inactive and was rapidly gaining weight. The symptoms and side effects began to drag Lula down into a deep depression.
Lula went to four different specialists, had MRI’s done of her entire spinal cord, electric nerve testing, and nothing, besides swelling, was coming up as abnormal. The only thing doctors had to say to Lula was, “It’s all in your head.”
“I was heart broken when they said that. I was just filled with complete disbelief and despair.”
Her doctor recommended that she go back to her neurologist, and sent her home with pain medication in the form of a fentanyl patch, a narcotic based pain medication that is best used for patients in consistent and constant pain. This form of pain medication is high risk and the FDA has issued strict advisories that patients should not divert from their doctors directions for its use, as it could have fatal consequences.
Unfortunately, this patch just exasperated Lula’s problems and she experienced some of the more extreme and warned side effects of the patch. She started hallucinating and would have extreme changes in her personality that she would be unaware of because the patch was also causing her to have memory loss.
“I would tell my husband that when I do something that bothers or upsets him or if I get aggressive, he has to tell me right away because otherwise I would have no idea”
Needless to say, it was apparent that Lula needed to look elsewhere for answers.
And so, she went to CrowdMed and got to work.
“Initially filling out the patient survey I was irritated because it was so long, but then after I was done, I was like, ‘This is great because now they [medical detectives] have everything!’”
Within 7 days, Lula started seeing results and the first diagnostic suggestion submitted struck a chord with her: Tarsal Tunnel Syndrome, a rare disease caused by damage to the tibial nerve that can be treated by a podiatrist.
“When I saw it, it all made sense! And no one had even thought to tell me to consult a podiatrist”
Weeks later, Lula had her confirmed diagnosis and was on her way back to healthy.
“The podiatrist had never heard of CrowdMed and was impressed with my history and getting to her through the site (i.e., advice to see a podiatrist ),” commented Lula. “She was not surprised at all with the comment of the other specialists, not knowing and going straight to psychosomatic. ‘This is an often missed and misdiagnosed condition,’ she said.”
The podiatrist prescribed a treatment that included an injection in the left foot and wearing corrective boots.
“I felt results within days. I was able to walk up and down the stairs and sleep through the night without pain.”
When all was said and done, Lula’s medical mystery cost her more than just out of pocket costs. She was forced to sell her home in order to pay for the medical expenses and her marriage was pushed to its limits.
“I wish I had known about CrowdMed sooner, then maybe I would’ve been able to keep my house. For me, CrowdMed was cheaper than going to other specialists.”
An amazingly optimistic patient, Lula sites that there were many things to be gained from this process. Selling her house she now sees as a way to have a truly fresh start from her disease. And as for her marriage: while Lula was suffering from memory loss and extreme personality changes, she and her husband made the effort to make the lines of communication completely open in order to manager her drastic personality changes. But because of this, there is now nothing they don’t talk about and it has made their marriage stronger than ever.
Today, Lula is almost back too normal. Her dosage for pain medication is at a minimum and she is on the path to healthy. Finding her diagnosis wasn’t easy, but the fight was definitely worth it.
“Never give up because you know your own body and if you know something is wrong, then something is truly wrong and it’s just time to find the correct people who know what’s wrong with you.”
To learn more about how CrowdMed can help you or someone you love find answers, click here.
*Not the patient’s real name