- CASE FILE
A walker at age 45? That's me. Disabling fatigue, OA, anemia, a myriad of short and rare illnesses, there's got to be a common denominator
ABOUT THIS CASE FILE
At the age of 32 I went to get out of my car and my left leg collapsed under me. Even though there was no traumatic event, I had to tell the doctors I was in a car accident to convince them it was serious enough to do an MRI. I went into emergency surgery for Cuada Equina Syndrome. Unfortunately, it became the typical relationship with most of my doctors to explain which tests I thought they should do. Today my spine has multiple issues. I was diagnosed with a rare condition, Adhesive Arachnoiditis, by my neurologist 6 mos ago. It had gone undiagnosed for 13 yrs. The diagnosis of a spinal disease which is recognized to have such unique and severely painful symptoms was almost comforting after all those years of hearing from many, "I understand how horrible back pain is". But I could pick a piece of lint up off the floor and not feel one leg or walk for 3 weeks. I was forced to believe what I was experiencing was normal for most of the world, and I should just "buck up". Was I that weak? The doctors say i'm the youngest patient they have seen these issues with. I've developed osteo arthritis in most of my joints. I've had 6 knee surgeries, 3 being replacements, by the age of 45. My bloodwork shows a chronic anemia, so I've had several blood and iron transfusions. They do not know what's causing the iron deficiency. My fatigue is both physical and mental. I wake up tired in the morning and it goes from fatigue to weakness as the day progresses. I also vomit every morning until I take nausea and migraine medication. My concentration is also very poor. I have neuropathy in my legs because of my spine issues, so if I'm going to be out all day I have to bring my walker for support as well as pain control.
Over the last few yrs until present I continue to have short illnesses and conditions that seem to have no relation, other than, i'm told, they are each temporary and rare autoimmune illnesses. They are becoming more frequent. I'm just going to list a few of these:
Erythema Multiforme (preceding a horrible post- surgical infection that landed me in the ICU as I was septic.)
MRSA Vit B12 deficiency
Vit D deficiency
Neutropenia The iron-deficiency anemia averages at a hct of 24. I go through periods of time in which i have disabling pain. I am in the middle of one of my short illness, causing 37 lbs of weight loss in only the last 2 months! During the "flare-ups" I have soaking hot flashes, even on a 10 degree Boston winter day. But my thyroid tests are normal. Other blood tests are all over the place.
With all this, I have not had a doctor take time or even care to look at all the pieces. They treat each illness as it comes up until the prevalent symptoms are resolved.
But im always still left with the chronic nausea, loss of appetite, pain, migraines, weakness, and mental and physical fatigue. There's got to be a reason. My husband sees me deteriorating, and he feels helpless. If a diagnosis was found maybe it would at least stop the progression. An answer would be life changing, because presently without one I feel I'm not taken seriously and some days I almost want to give up the fight. Just not get out of bed, or eat, or interact with anyone or any part of this world. My husband is legally blind, so I have a lot on my plate, but I feel like I just cant run the house anymore.
We were evicted with a move-out date of September 30th.
I have had so many hospitalizations, I've not successfully found a place. (We have no preparations for that date. And unrealistically I dont care.) Actually I was discharged from Beth Israel today after life-threatening elevated kidney enzymes due to dehydration from vomiting every day. They put me on multiple open-drip bags of saline for 3 days and sent me home...until the next crisis. I'm done with putting a bandaid on each issue as they come up. It would obviously be life-changing if I could get an answer. Even some support. My soul is tired.