Mayo Clinic - Road to Recovery - Lindsay Langan

Update from Lindsay: We have reached our original goal of $2000 through gofundme, e-transfer, cash and the kind individuals who have mailed cheques!

I want to thank everyone who has contributed. My first appointment at Mayo is on April 29, I will be leaving April 26. My last appointment is scheduled right now for May 7th. This will not include any potential surgery or treatment if needed. We have just received the official estimate from Mayo Clinic to be 21,726 USD.

this does not cover travels, meals or treatment. This week, My Internal Medicine Specialist has gone to bat with Manitoba Health with the hopes of having some of the assessment covered. I am so thankful for her help in this!

on February 2024, my mom was accepted as a patient into Mayo Clinic!

Backstory:

In August of 2020, my mom experienced an episode that was labelled as a panic attack. She was treated for low potassium and sent home.

Her symptoms escalated, and for nearly two years, her and my dad attended the ER 2-3 times per week, with symptoms that became unmanageable. Tremors, difficulty breathing, episodes of tetany, hyperventilating, and loss of consciousness.

After six months, my mom’s symptoms became so bad, that a doctor suggested suggest that my dad take a leave from work as doctor were so uncertain of her long term prognosis, No one knew what was causing her symptoms, and Covid put restricted her ability to see specialists in a timely manner.

Eventually, she was seen by a nephrologist who immediately made a diagnosis. It was found that her initial episode was not a panic attack, but a cardiovascular event caused by low potassium, and a very rare kidney disorder called Distal Tubal Renal Acidosis with Hypokalemia (dTRA). Within a week of starting bicarbonate treatment and potassium, her symptoms improved. Her episodes of hyperventilating stopped, and her episodes of unresponsiveness improved. She will get weekly labs for the rest of her life, unless an underlying cause can be found and corrected. There is currently a 1-3 year wait for my mom and I see the geneticist.

Despite diagnoses, she continued to have episodes where she would lose the ability to speak, have difficult swallowing and word finding. Her hands and neck would stiffen. Again, she was told this was panic attacks and anxiety when she would attend the ER and was labelled as having “Conversion Disorder”. She jumped through a number of doctors, finally finding one who would send her for more seizure testing. Her first EEG showed epilepsy, but her second test did not, and she was again sent on her way. The episodes continued. Eventually, internal medicine sent her for two more EEGS, this time more in detail, both resulted in epileptic activity in the left temporal lobe.

Even after treatment of both the seizures and DTRA, she continued to have episodes of sweating, weakness, slurred words, racing heart, and tremors. We attended the emerg on many occasions, to again be sent home with a diagnosis of “panic” or “anxiety”. In May of my grad, Grandpa Lee came for a stay from Alberta, and within hours, he witnessed one of her “episodes”. He immediately recognized her symptoms as low blood sugars. She had been having these episodes daily for months, and herself had attributed them to mental health, truly believing they were anxiety . In Yorkton, she was hospitalized for over 100 days, doctors unable to keep her sugar levels above 4 without the use of a Dextrose drip. Her labs were sent to Mayo Clinic to test for insulin, as staff were concerned she was self injecting insulin to cause the low blood sugars as there was so much written about mental health in her charts from Manitoba. Mayo clinic labs confirmed by speciality tests that she was not taking any type of insulin exogenously, the insulin was being produced within her body. She was immediately sent to Regina, and then later to Saskatoon for a PET scan to locate an insulin producing tumour. The PET scan ruled out an insulinoma, and the decision was reached that it was her entire pancreas producing too much insulin, and specialists spoke of removing part of the pancreas. She continues to have daily low blood sugars, and provincial Endocrinologists are stumped.

At this time, her medical care is costing my parents several thousand a month out of pocket. Last years medical expenses totalled over $30,000. Most of her medications, although she needs them to live, her medications, are not covered by any Manitoba Blue Cross Plan, or eligible for Pharmacare. Manitoba does not cover Potassium, Magnesium, Sodium Bicarbonate as they are all natural substances that most people’s body’s produce and use on their own, and Manitoba does not cover supplemental medications. She is also not covered for her Libre sensors, as she is not diabetic, she only experienced low blood sugars as a result of her body making too much insulin.

Just this week, we have received news that

An Internal Medicine specialist is able to take my mom on as a patient in the next 6-12 weeks to try and find a unifying diagnosis. Mom has also been diagnosed with thymus hyperplasia (another very rare condition) which may be contributing to her vast array of symptoms.

An amazing doctor local to Russell, saw our struggle, and within a week, he and her Internal medicine specialist were able to get her into Mayo Clinic Rochester. He has also referred her to a specialist in Winnipeg who can run tests to do with thymic hyperplasia and the conditions that can cause this.

While we are so hopeful for answers and a proper treatment plan, the costs will be high.

We are very appreciative of any prayers and support, and we are already so grateful for the support of friends, family, and my employers (T&C and Roblin Ford) who have supported us in what has been the most difficult time we have ever faced.