Anne Marie's: The Way Back Fund

Anne Marie needs an operation to remove a tumour which has left her housebound for the last 6 months, it is extremely rare and on her thymus gland and has caused almost 5 stone weight gain, muscle weakness, constant hiccups, a cough and her chest wall has started to protrude. It has left her unable to walk and unable to participate in life and society. If Anne Marie doesn't get this tumour removed urgently she would be left a prisoner in her own home, bed bound, completely isolated and ultimately reliant on full time care, We are setting up this gofund me page because we are almost out of resources both medically and financially and my brave Anne Marie is running out of time. Why can't she get this treatment in Ireland you might question? And it starts with Anne Marie being misdiagnosed with M.S. over 10 years ago..... Once a talented award winning hairdresser Anne Marie became spokesperson and a fundraiser for The Multiple Sclerosis Society of Ireland, after her diagnosis of M.S. Anne Marie defied all the odds stacked against her, relearning to walk and talk many times, encouraging others to live the life of their choice, not the life chosen for them. She spoke for those who had no voice and still does to this very day. Anne Marie learned the tools to battle her disease, would be to keep her body strong and athletic and feeding it good nutrition. She joined gyms, she swam in lane training groups. she was stronger fitter than many men or women who had no disability or impairment.       Anne Marie was diagnosed with Multiple Sclerosis in 2008, after many years of symptoms, a diagnosis that would prove to be inconclusive given later information. She suffered not one but 12 lumbar punctures, this was excessive to say the least.   Important information was overlooked at the time of her diagnosis, she was from a farming background, growing up on a dairy farm with a history of multiple tick bites.   After suffering full body paralysis and swelling of her brain, (aseptic meningitis) hearing loss, (not accepted to be a symptom of M.S) tinnitus, severe vertigo, arthritis in almost all her joints (particularly her knees, which had been injected with steroids and hylauronic acid for many years) Anne Marie began to question her diagnosis, especially given one of her siblings. had also 3 years previous, been diagnosed with Neurological Lyme disease.   Untreated Lyme can in-fact manifest as many illnesses such as Multiple Sclerosis, Parkinson's, Alzheimer's and Motor Neuron Disease. And given poor and inadequate testing, not just in Ireland but throughout the world (the Elisa and Western Blot), many will be given these diagnosis, of an un-treatable illness, as Lyme will not have been thoroughly excluded.   Anne Marie was diagnosed 10years too late with Neurological Lyme disease or Neuroborreliosis through superior laborartory tests in Germany. Knowing now that much of the disability she suffered could have been prevented, had there been adequate tests and informed medics at the time. Simple antibiotics could have reversed much of the damage.   Yet Ann Marie threw herself into curing her Lyme, not wallowing in the past mistakes, or on how the doctor's had let her down. She started on a herbal protocol, (The Cowden Protocol) that saw her within one month, improve drastically, her arthritis virtually disappeared over night her walking distance and permanent nerve damage in her right eye reversed.   She went from strength to strength with the help of a nutritionist, she tackled Lyme from every angle using every weapon in her arsenal. She partook in hyperbaric oxygen treatment, ate a ketogenic diet, drank alkaline juices, went swimming almost daily, took triple antibiotic therapy treatment and finally used biomagnetic pair therapy to put her Lyme disease into remission.    Despite every obstacle Anne Marie has tried to take every devastating diagnosis given to her and find the hidden silver lining. "asking what can I do now to better my life" Because that is who she is. Everything that Anne Marie has faced she has conquered it. Multiple Sclerosis, Lyme disease, Arthritis,  And she has done this quietly and in-obtrusively. All Anne Marie has ever wanted was a happy healthy life, and to help who she could along the way. She has never asked anyone for help and would have been very proud all throughout the years. Trying to do it all herself for her amazing 16yr son Oisin. Who is her anchor, and her world.  But sadly, Anne Marie, started to gain rapid amounts of weight, her cortisol (natural steroid hormone) levels were out of range and rising, she suffered terrible bouts of insomnia. It was obvious there was something terribly wrong. She was admitted to hospital twice in 2017, with rhadomyolsis, which is a serious syndrome due to the death of muscle fibers and release of their contents into the blood stream. This can lead to renal failure, and damage to the heart, adjunctively she was diagnosed with postural orthostatic tacycardia abnormally low blood pressure and an increased heart rate. She suffered worsening exertional fatigue.  Something more sinister was at play now and Anne Marie sought doctors who could help.  Cushings disease or syndome was being investigated by endocrinologists, Anne Marie had many of the traits of Cushings but not all of them. And so we began the long arduous road of testing for Cushings. She failed all the screening tests and even a further more sensitive and specific test just days before Christmas. It indicated that Anne Marie had a  tumor in her body secreting another hormone called ACTH. An MRI of her brain was ordered to look for a pituitary tumor, at this point. It was mid March when the MRI was performed and the results indicated that there was no tumor in her brain. But this now indicated that the tumour was elsewhere in her body. Most likely a pancreatic tumour, small cell lung cancer or a tumour of the thymus gland. Anne Marie was suffering changes to her circulation in her hands, constant hiccups, a cough and flushing of her chest.  Given this information Anne Marie took her own care into her own hands and begged her very supportive G.P's to send her for a thoracic abdomen and pelvic C.T. She was admitted to hospital in Roscommon. The doctors there could not have been more helpful.    Low and behold the tumour was found "Some tissue behind the sternum may represent thymoma with ectopic ACTH production".   This was our Light bulb moment!!!!!   We've got the answers, to all our questions!!! This is what has been causing the hiccups the cough, the Cushings syndrome the severe muscle weakness, the skin flushing.  A thymoma, the name given to a tumour of the thymus gland which is generally found in those suffering from Myasthenia Gravis. Another neuromuscular disease caused by an autoimmune process.    This is where, I guess, you are all imagining where the fight ends, the battle is won, the doctors step in and the tumour is removed and Anne Marie gets her very happy life back. But this is not one of those stories........there is no happy ending...yet!  Anne Marie has been discharged from her endocrinologit's care, she failed her most recent test due to some abnormalities in her bloods, her albumin and globulin were low at the time, these less sensitive and specific tests were carried out though low albumin/globulin is a contraindication in their use. Making the tests null and void.  Anne Marie consulted with a Cushing's specialist in the Uk who believes she still has Cushing's syndrome, with an overlapping Myasthenia Gravis which accounts for the severe weakness Anne Marie is suffering. He also noted that many endocrinologists do not realize that these tumors can release hormones cyclically meaning these hormone secreting tumours can be missed during testing.  Anne Maries tumour is so rare, doctors even believe it is not possible for her to have it.    The Irish medical system has let her down yet again, how can we let this continue? We can not.   The recent controversies in Ireland over the cervical screening audit, show's that this system is broken, and we would like to reiterate on that. To echo brave Emma Mhic Mhathuna's word's, this system needs to be "dismantled" should any more lives be lost.   Anne Marie is a testament to the strength of the human spirit, and proves just how much a body can bend before it breaks. But believe us now when we say, it is breaking now and her tumor needs to be removed.   She needs doctors familiar with all facets of her illnesses, which is impossible here in Ireland. The myth of multidisciplinary meetings, in which doctors from different specialties come together to work on a case are nothing but that....a myth, here in Ireland.  We are looking at working with a neurologist in Germany, who will collaborate with an endocrinologist and lastly a cardio thoracic surgeon who will perform her curative surgery.  Anne Marie and I despite limited funds have managed to pay for 9 months of the Cowden Protocol costing $290 a month, which is €2,240 in total, €500 on MRI's, €1,000 so far on the cost of her infectious disease specialist, €1,000 on German Lab tests, never mind multiple appointment's with consultants that ended in nothing, just the handing over of €170  she could ill afford to part with. This does not of course include the costs of supplements needed to rebuild her damaged system or alternative supporting treatments.   We are reaching out to you, now , our friends our family to support myself and Anne Marie and, we want nothing more than her health and to smile and laugh again. So for all of you who's lives have been touched by Anne Marie in a positive way, please remember her, she's gone from your sight but is still fighting this battle from the four walls of her home. Please help us get her to Germany to the doctors who are waiting there to help her. She deserves the best of care now, finally after ten years of suffering treatments for the wrong illness. Thank you for your great generosity, the money raised will go no end in restoring Anne Marie's quality of life and will hopefully give her back the life that she has fought so hard to deserve. Our heartfelt love and thanks to you all ❤️