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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.
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@tigernike1 a look at various medical websites indicates many possibilities for yellow stool. It can indicate that your body is not properly digesting food. This could come from problems with the liver or gall bladder. It could also indicate pancreas problems or maybe Celiacs. It could just be you are eating foods with a yellowish-orange color such as sweet potatoes. Since I am not a doctor, I cannot diagnose so you do need a doctor. You state that the Mayo website says it only takes transplants with Medicaid. The website can have incomplete info so I do suggest calling the patient intake number for information on who they accept. It is my understanding that Mayo takes some Medicaid patients. Please let us know of your progress.
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4 ReactionsI have an Uncle that moved to Arizona with foot neuropathy and it got so bad he had to leave ASAP! He was told it was the attitude
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1 ReactionJust an update, I saw a neurologist today. He refused a brain MRI, and is sending me off for nerve conduction studies. He wants to diagnose me with peripheral neuropathy of the arms and legs. He has "no idea" what could be causing the facial numbness, and extreme fatigue. I nearly fell asleep in the exam room. The neurologist stepped out for something, and I noticed on my records he set aside my GP put the word "psychosomatic" as a comment. This term was not listed on my online records. Great. So this tells the neurologist I'm a kook. I have nerve conduction studies tomorrow, and no further appointments from the neurologist. I'm getting the feeling its back to square one. I'm tempted to just go back to the ER, explain what happened last time, and ask for a brain MRI again.
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1 Reaction@tigernike1 I would like to make two points on your post. 1. Psychosomatic means an interaction of mental health effects from stress or some other problem, and from an actual physical problem. So he could be merely indicating you have stress or anxiety or something similar that is aggravating your physical problem. 2. Doctors can be wrong. My mother told her doctor she was having heart problems and the doctors for years dismissed it as just her anxiety. Finally she went to her present doctor and he sent her immediately to the hospital. She was diagnosed with a badly deformed heart that was terminal. They told her to go home and get her affairs in order. Her doctor who sent her to the hospital refused to believe it and found a teaching hospital that was willing to operate. She lived another 12 years. So if you believe you have a real problem, do not accept a diagnosis of nothing wrong. Keep trying and do not quit until you find a doctor who is willing to work with you to find out what is happening.
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4 ReactionsGood afternoon everyone. I wanted to continue to update my situation. I had a nerve conduction study done last Thursday at the request of the neurologist. I have not heard back (I've called and left messages). I made an appointment to see a new family doctor, and because of schedule can't be seen until April.
Frustrated by this instance, I made a request with Mayo online. The call was for today, to get the ball rolling. I understood that Mayo views Medicaid patients at a lower priority possibly due to the atrocious reimbursement rates. However, I got a call from a DeAndre at Mayo. He was very nice, but informed me that because I was an Arizona Medicaid patient, I could not be seen by Mayo. He said I should reach out to my insurance company for options on second opinions.
I'm incredibly disappointed and depressed now. I do not know what to do next, other than just get sicker and sicker. I do not have a job, because I'm too unreliable (thanks to my situation); my health is trash, and I'm running out of money. I have enough money for this and next month, and that's it. I'll then be broke, jobless, homeless, and sick.
So I just want to thank everyone here for their kind words and positive thoughts on my situation. Unfortunately, it looks like I've run into the failures of our healthcare system, and will likely fall through the cracks. I've accepted that I will likely become very ill or worse, in the next few months and won't see 35.
Again thanks everyone. And I will update if anything else happens, which looks like now it won't.
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1 Reaction@tigernike1 which Mayo Clinic told you they would not accept Medicaid from Arizona? Was it the Phoenix location or Rochester, MN, or the Jacksonville FL clinic?
@johnhans, it was the Phoenix location. I reached out to them online and they called me today.
So the past two days I’ve had this terrible cough and wheeze. My GP had prescribed me Symbicort because my advair had run out. Thanks to our wonderful healthcare system (Medicaid), the insurance denied it and requested a pre-authorization. My GP sat on it. I’ve now gone 9 days without asthma medicine. I’ve been using my puffer 5-6 times a day.
My upper back pain isn’t going away either. Neither is the weakness and numbness. I actually can feel my chest pounding quite a bit. Blood pressure is fine. Heart rate fine. Been emailing those results in, per the GP request.
My legs, are swollen. Ankles too, and they... hurt. On a 10 scale maybe a 7 or 8. And it’s both ankles. I talked to my best friend who told me I’m flipping out and I just need to “suck it up” and go workout. He gave me this long pep talk. So I heeded his advice.
I live on the third floor of an apartment, and walked down to get to the gym, about a half mile away. As soon as I hit the steps my ankles were on at a 9 on the pain scale. My friends words were still in my head and I was determined to at least get to the gym. Once I got to the gym I had to climb a flight of stairs. Again 9/10.
He told me to try to walk for 15 minutes on the treadmill. I got up to a 2.5 incline going 2.8 mph. A steady walk. 5 minutes in I couldn’t take the ankle pain so I slowed down. That made it worse. Pain was 10/10. But I was determined to get 15 minutes in. By 7 and a half minutes my back near my tailbone gave out. Everything was 10/10 and I stopped. He told me to try the bike. I’ve always used the “sit down bike” where your arms are at your side instead of in front of you. First I had to adjust from my normal spot because I’ve gained so much weight in my abdomen my legs couldn’t get high enough for a revolution. Did a steady pace and my tailbone pain subsided but the ankle pain came back with avengance. I got to 5 and a half minutes and was in so much pain from my ankles I was crying. I stopped.
Just 6 months ago I was busting my ass in that gym. Doing an hour on the treadmill or 45 minutes on that same bike. My friend told me I was a whimp but I genuinely think my ankles hurt because my legs are swollen from something that hasn’t been found.
I still think this is autoimmune, or an infection gone awry. My body is breaking down, at 34. I had my ultrasound done today and should hear back either tomorrow or Monday. I’m going to call my neurologist and curse someone out. It’s been 7 business days since my nerve conduction study and no results.
Anyway thanks to this forum for letting me vent.
@tigernike1 thank you for your reply. I am glad you at least got out of your apartment. You did more than I can do. I cannot walk that distance or go the stairs. Hopefully they will find something that is causing your problem. Please keep trying and keep on keeping us informed. We are still here rooting for you.
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3 ReactionsYou have my sympathy . Your story could suggest environmental causes as my cousin had a similar story and it started when he moved to a new apartment. It was traced to some sort of mold. Hang in there I have gone through a lot my self going to Mass General for lot and lots of test with out any good diagnoses . I am taking gabapentin and lorazepam as well as duloxetine. Some small relief. MRI Ct are all a pain but necessary for a good sound evaluation . Stick with it as I am doing and we have to hope for better results. I pray for you that you will get some results.
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