Numbness All Over: My story...
Hello everyone. First to the mods, please advise if you feel this belongs in a separate forum. I’m 6’5″, 330 pounds, and I’m 34 years old.
I moved to Arizona in 2018 from Illinois, and within a few months, developed a cough. I was treated with antibiotics, and steroids. I feel good for another 3-4 months, and get sick again. Same symptoms, same diagnosis (acute bronchitis), same medications. In about June or July last year, I developed a slight drool on the right side of my mouth. My doctor told me it was nothing and would go away. It didn’t. Maybe a month after that visit, I get sick again. This time I’m given an inhaler, antibiotics (round 3), steroids (round 3), and a chest X-ray. X-ray came back normal. I was referred to an ENT for the drool, and trouble swallowing on my right side. He did an endoscopy, and said I was making it up. Approx. September, I start to develop numbness in my ring and pinky fingers on both hands. This then grows to include my forearms and upper arms. This spreads to my pectoral area.
It’s early October and one night I couldn’t breathe. I tried my inhaler, and couldn’t breathe. I went to the ER. They did a chest X-ray, and gave me a nebulizer treatment; and sent me home. Two weeks after that, the front of my neck and jaw start to go numb. I could literally feel it “climbing” up my body. Then my temples go numb, and my eyelids start twitching. I have yet another attack and go to the ER for a second time. I advised the doctors what was going wrong, and they diagnosed me with a probable “bilateral ulnar neuropathy” in the arms, and recommended I see a neurologist, then follow up with my GP. I was unable to see my GP, so I had to go see a stand in doctor. When I see him, I was so confused answering his questions, he immediately sent me back to the ER. He thought I was having a stroke. My blood pressure was in the 220/140 range. Barrage of tests were done, including CT scan of brain, blood draw, chest xray. All came back negative.
Maybe 2-3 weeks after that I start to develop small pimple like rashes on my arms. I was told they will “go away”. They haven’t gone away, and have started to scar my arms, and parts of my legs. It’s almost Thanksgiving now, and the numbness has spread to my entire face. I feel like I’m wearing a mask, from forehead to temples, cheeks down to the jawline and chin. From the chin down the front of the neck to the pectoral area and out to my arms through to my fingers. I see my GP again, for a followup, and he chastised me for my weight, and told me to start exercising. I get home and start working out on an exercise bike. After three days of moderate biking, I wake up in the middle of the night with my calf cramping like crazy. I get up hobbling in pain and try to walk it off. I was able to, and went back to bed. Approx, 45 minutes later, my entire leg cramped up from thigh all the way down to my feet. The next day, both calves are sore, and my pinky and toe next to it start to go numb. Same as with my arms, the numbness is bilateral. Soon the outer portion of my feet and legs start to go numb up to my knees. I call my doctor, who says to “take more fluids”.
A month goes by and I’m pretty numb all over. I get sick again in the middle of December with a horrible cough, and am prescribed a nebulizer. I fly to Florida to see my parents for Christmas, and it was a disaster. I coughed and coughed the entire time there. I had 2-3 breathing treatments a day. I coughed so much I ended up getting a cough suppressant, which I’m not sure helped. I get back and see my GP again. I tell him about my numbness all over and that I’m starting to feel like I’m dying. He laughed at me, and said that it had to have been a problem with my neck because the numbness was bilateral. He orders an MRI. I’m claustrophobic and try a closed, open, and finally an open “stand up” MRI. I completed the cervical MRI, and was told by phone from my GP that everything looked “normal”. I said I felt worse. He said he would refer me to a neurologist. I call to make an appointment, and I can’t be seen for 8 weeks!
It’s early January, and my eyes start to feel very tired and I’m sleeping 12 hours a day. Everyday sounds start to “shock” my brain. I still have the cough. I’m accomplishing nothing during the day, and start to feel faint and confused. I go to the ER in the middle of January, this time to a different ER but in the same hospital chain. The doctor there immediately suggests I see a neurologist, and I tell her my story and that I can’t be seen until end of February. She orders a brain MRI, but I couldn’t tolerate it. They refused to sedate me because I didn’t have a ride back. I get a referral to a different neurologist from the ER for that week. I get a call from their office the next day, and because I’m on AHCCCS (AZ Medicaid), I can’t be seen. Although I could pay out of pocket, the receptionist said it would be pricey, and that I should call my insurance company for a neurologist. I’m furious at this point, and email the hospital’s patient relations department, saying the previous ER trip was worthless.
Now its early February and I’m still numb everywhere mentioned; and I start falling asleep during the day. I feel like there’s a “band” around my head that covers my eyes. My eyelids are still twitching from the side. I just sit at home and wait for the upcoming neurologist appointment. I go out one day to get gas for my car, and I blacked out while driving. I almost run into another car. When I realized this I went back to the ER. The doctor there ordered a “rainbow draw”, and a CT of the brain. He then ordered a CT of the head and neck with contrast. I fell asleep in the room. I was woken up and told the results were normal but the doctor would like to do a brain MRI. He told me he thought I might have MS. Unfortunately, like with the previous instance, I couldn’t tolerate the MRI machine and couldn’t be sedated because I didn’t have a ride back home. This is their policy. And because I couldn’t tolerate the MRI, the doctor charged me with “leaving against medical advice”. I see my GP tomorrow for other issues, including sharp abdominal pain, the damn cough that won’t go away, and these arm rashes I still have. I finally see the neurologist next Tuesday, but his ratings are 1.8 out of 5 online, so I don’t have much hope. I would love to go to Mayo, but I have AZ Medicaid, and the website says only “transplant services” are available.
I came here because this is Mayo, and it’s the only place I view in high regard. I apologize profusely for the long post but I honestly feel something is seriously wrong and no one really cares to listen. I have no idea what’s going on, but slowly I’m feeling weaker and weaker. I appreciate any response. Thank you.