Editor's Note: The woman who shared this story asked to be kept anonymous.
I’ve been suffering from numbness and tingling in my hands & feet for a few years now. When it began, it definitely scared me because I have a strong family history of autoimmune diseases, specifically MS. Plus, at 11-years-old I was diagnosed with Type 1 Diabetes, another type of autoimmune disease.
I immediately made an appointment with a neurologist. That first neurologist told me he thought I was most likely fine, but would like me to get an EMG to be sure. Well, between the time of that appointment and before I ever got around to my EMG, I got a letter from that doctor’s office with a summary of my visit. I do not recall the exact wording, but I do believe it alluded to the fact that my symptoms were most likely “all in my head”. That was enough to turn me off to the whole thing, so I never went through with the testing.
Fast forward 3 years later. The numbness & tingling comes and goes, but then progressively gets worse. Now being diagnosed with a second autoimmune disease, Hashimoto’s [Ed. note: Hashimoto's is a disease where the immune system attacks the thyroid gland], I decide I should probably suck it up and see another neurologist. It takes two months to get in to see him. After barely talking to me, or even thoroughly reviewing my chart, he decides my symptoms must be neuropathy from having Type 1 Diabetes for 17 years. He then wants to throw a medication at the problem, despite no official testing or blood work. He offered me Lyrica, but then mentioned it causes weight gain. I strongly stated I did not want a medication that caused weight gain, as my Hashimoto’s has caused me to gain around 30 pounds already. To which he replied “Oh? You have Hashimoto’s? That’s two autoimmune diseases then.”
….. REALLY?!? No sh*t Sherlock.
After that, he decided to order some blood work to see if something autoimmune was going on, as well as an EMG for potential neuropathy and/or carpal tunnel. By this point, I was trying very hard not to cry, as he has his back to me, typing away on the computer, for what seemed like an eternity. Every once and awhile, he would make a comment about how Type 1 Diabetes is very difficult to manage, and considering how long I have had it, complications are bound to happen. I tried to explain to him that I have always managed my diabetes to the best of my ability, never having an HbA1c much above 7%. He responded “Well medically we need it below 6%”. In one sentence he completely discredited 17 years of hard work, insulin shots, bloody fingers, lost sleep, & tears. He sent me on my way with various orders, as well as a prescription for Neurontin, even though we don’t truly know if neuropathy is what is going on.
After spending the night crying & cursing my body for all of its issues, I decided to take things into my own hands. I will get the blood work & the EMG, but I intend to try and manage my various conditions on my own, through diet and lifestyle interventions, to the best of my ability. It seems as though doctors are so quick to throw a drug at you, despite various side effects. I am hoping the various tests will give me more answers, and if I need to seek a second opinion else where, I intend to.