Tracy's interview
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How did all start?
My entire body became numb. Paralysis. All signs of neuropathy- pins needles, knives, burning, all test showed I didn’t have it. Never diagnosed it. Gave 300 my. Gabapentin, then legs became numb, increased gabapentin to 600 3 x daily, but didn’t help. I soon realized my entire body was numb, from head to toe. Still no diagnoses for that!! Had a mri to see if I have pinched nerves but instead showed the fluid around my brain. So April 2017 I was treated fro that with diamonds which gave me Alzheimer’s symptoms, I didn’t know where I was what I was doing, language confusion, disorentied, etc. now I quit diamond, quit gabipentn, feet burn so bad I can’t stand it, but afraid to take any gabipentin. Spinal tap was 37. I’ve had Symptoms: * Migraines/headaches * Vision Loss/ blurry eyes/ double vision * Nausea * Fatigue / weakness / muscle weakness * Neck, shoulder or severe lower back pain * Ringing in the ears * Insomnia/ sleep apnea/ narcolepsy symptoms/ sleep paralysis/ falling asleep all the time no matter what I was doing/ * Dizziness/imbalanced Total body paralysis/ Pins/ needles/ knives going through my feet and legs Severe Burning in my feet I had all these symptoms For a long time, just lived with it, everytime I told doctors they was mad because I complained so much about all the same symptoms and didn’t have time for me. So that’s my life. There’s times I would get out of bed, get to a chair and could not move the rest of the day, I could not even lift my arms off the chair with all my might. I had no help, so I’d sit and suffer in every way!! I could not work my entire life because I fall asleep driving, I have been so tired and weak my entire life. I do not and have never got diasability, because no doctor would help me. This is just the way I have lived and suffered. It’s awful and I wouldn’t wish it on anybody! I wonder why there is even birth, if it is such an awful painful life!
Do you already have a diagnosis? How long did it take you to get it?
April 2017- IIH Paralysis- don’t know why! Sleepiness- don’t know why! Suffered all my life fe- couldn’t get help!
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have asthma- lung dr. Sleep apnea-lung dr Sleepiness- lung dr. Electrical short in heart- but says normal- just watch IIH- neurology Glaucoma- eye dr.
What has been the most useful thing for you so far?
Nothing but sleep/ laying still in a quiet room!
What have been your biggest difficulties?
Getting the energy to move. And weakness.
How has your social and family environment reacted? Have your social or family relationships changed?
Everyone acts like it’s a big joke and there’s nothing wrong with me. There’s always someone worse that me. I feel like I’d be better in a nursing home and I am only 46. I have nobody that can life a finger to help me!
What things have you stopped doing?
Driving, cleaning, cooking, about everything! I have no strength, I’m worn out and tired all the time and headaches are unbearable when they come on.
What do you think about the future?
I’m worthless/ helpless/ a burden!!
So far, which years have been the best years in your life? What have you done during them?
I can not remember any good years, I’ve had migraines since I was a teen so bad I’d crawl across the floor. I was never diagnosed why. By the time I was 20, I had sleepiness and couldn’t drive. I’ve always depended on others. Beau sea was so bad, I couldn’t even shop when I need to, I done without.
What would you like to do if you didn’t have your condition?
I’d have a good paying job and do things with my kids instead of them blaming me that it’s always my fault they can’t do anything fun. I’d have someone take them to Disney world if they could, or go on trips to seek things. It’s just all my fault their life has been so bad.
If you had to describe your life in a sentence, what would it be?
Hell on earth!!!
Finally, what advice would you give to a person in a similar situation?
We’re screwed unless there is a cure! I want to feel!! I want to live!! I want to feel like something!!!
