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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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Hi @tigernike1! My name is Laura and I experience very similar numbness to what you describe. I’m 26 years old and it seems like there aren’t too many people our age going through this struggle. The numb feeling in my hands began with my thumbs on both sides then worked its way around and slowly creeped up my arms. Everything is difficult when you can’t feel your hands. I was hospitalized for one month, went to Duke, and I’m now on the mayo neurology waitlist. I have a very wordy diagnosis but no real answers. I am here to talk with you if you ever need some support! Wish you all the best
Laura K.
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3 ReactionsHello everyone,
I hope everyone has been heeding the advice of doctors and the CDC in response to the COVID-19 outbreak. A few things have changed since I last posted.
I literally complained to my doctors office about my lack of long term asthma medicine (I mentioned the Symbicort in a previous post). Fun story. My insurance denied the Symbicort and sent it back to the doctor office. I heard nothing for two weeks, and was using my puffer 5-6 times daily. Frustrated, I reached out. They told me my insurance showed cancelled. That’s right, cancelled! I’m on Medicaid, Medicaid doesn’t cancel unless you make too much. After a week of back and forth they finally figured out I wasn’t cancelled but insurance wouldn’t cover the Symbicort. So the doctor suggested Qvar, and said it would be covered. I get to the pharmacy, and it’s denied. More back and forth with the doctor. The following week I get a prescription for Pulmicort, which is actually more expensive than the Advair, but they covered it. So, I went 35 days without asthma medicine, except my rescue inhaler. Fun.
I still have a ridiculous cough, and a nighttime wheeze that’s so loud it wakes me up. I have an appointment with a pulmonologist but not until middle April (subject to reschedule due to the outbreak).
Another thing I’ve noticed, when I was out trying to walk. I felt a stabbing feeling in my right armpit. I didn’t think anything about it. The next few days the stabbing feeling is still there. I hop in the shower, and there it is. It’s a lump. I only feel it when I move my arm forward. It lines up with the numbness in my pectoral area, and my cough, and my back pain in the same location. The lump is painful like a bee sting. And come to think of it, the numbness in the front of my neck follows the path of the lymphatic system. No other swelling I noticed in my neck, but my lymph nodes in my neck are extremely sore, as are the ones that go behind the ears. I’m not going back to my GP for that. I want to see a new doctor for it. I don’t know when would be a good time to have it looked at, with everyone forced to stay home.
My legs have also been swelling up, with pitting in the same shin area on both legs. It’s not all the time, but the numbness is always there.
I heard back from the neurologist, after 3 weeks. I’m assuming that’s normal. And his office said he wanted me to come in for a full evaluation. They said the nerve conduction study showed “problems”, but they don’t think it’s MS. I see him in early April. I will ask for a brain MRI, just to get it over with.
Anyway that’s all I have so far. Just kinda limping along, but still staying positive. I’ll update when I have more information.
Cheers,
-Ryan
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4 ReactionsHi, @tigernike1 - I'm sorry you're having to wait for these medical appointments. Limping along sounds a little rough, but it's clear you are indeed trying to stay positive.
I also have asthma, and I'd be in trouble (lot of symptoms, not ER visit-type) without my inhalers. I have taken the two inhalers you mentioned, and now I take ipratropium bromide HFA (Atrovent HFA) and mometasone and formoterol (Dulera). My allergist has changed my meds every few years when I've become more symptomatic again.
Another Connect group in addition to this one, Brain & Nervous System, I'd suggest you might check out is the Lung Health group https://connect.mayoclinic.org/group/lung-conditions/. Here are a few of the discussions related to asthma:
- Groups > Lung Health > Fragrances and Asthma / Allergies https://connect.mayoclinic.org/discussion/fragrances-and-asthma-allergies
- Groups > Lung Health > What is the best medication for exercise induced asthma vs side effect https://connect.mayoclinic.org/discussion/what-is-the-best-medication-for-exercise-induced-asthma-vs-side-effect
- Groups > COVID-19 > COVID-19 symptoms and how they differ from Asthma symptoms https://connect.mayoclinic.org/discussion/covid-19-sympotms-and-how-they-differ-from-asthma-symptoms
How is your mobility with the numbness you mentioned? How's the rash?
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2 ReactionsJust want to give an update. This might be my final post. I just finished a virtual appointment with my neurologist. He said the nerve conduction study came back normal, and EMG was also normal as well. He said he felt bad but I would have to live with it, and said I should lose weight. No hard feelings to the doctor, he’s just doing his job. So I’m back to square one. I’m unable to see a new PCP until this virus passes.
I know something is wrong with me. I’ve been sleeping 10-14 hours a day, and been very tired when I’m awake. I was on the Pulmicort for two weeks; my cough got worse, had headaches all day, and got bad chest pain. With my nurse’s permission, I stopped using it. Cough almost vanished, as did the chest pain. Headaches come and go. I’ve gone back to using my inhaler 3 times a day.
I noticed that along with being very tired, both of my armpits hurt. It’s like a numb stabbing feeling. My right armpit really hurt at first, like being poked. After a week or so, the left armpit started to feel sore. Now, like a wishbone, I’ve got numbness from one armpit to the other, including the top part of my chest and collarbone. I can’t tell if what I’m feeling in my armpits are just sore muscles or lymph nodes.
My red bumps continue to show up everywhere, had some appear on my face. I’ve tried popping them like acne but they don’t pop. They just stay there.
Lastly, I have noticed my legs have started to form “pits” in the front part of the legs, roughly halfway between my knees and ankles. About two inches across. Sometimes it’s very obvious, and looks like someone cut off my skin.
I honestly have no idea what to do now. Neurologist said he wants to see me in 6 months “if I continue to have symptoms”. The ENT I mentioned laughed me out of his practice. And my primary care doctor is a clown.
Please don’t feel sorry for me, I don’t want it. I just want to feel better, because I feel like I’m so sick I can barely function. Thank you everyone for your help.
@tigernike1 Have you tried any other specialist ? A regular M.D. I think would be perplexed . I would suggest a Infectious Disease Dr. ? an Endocrinologist . Yes there is something going on that no one has found as of yet . Dont give up try different specialist . One will hit on it . Those are my 2 suggestions. Hoping for the best for you
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2 ReactionsHonestly lioness, thank you. I think my body is trying to fight something, and I’m feeling my lymph nodes swelling. My ultrasound showed my spleen and liver were enlarged, but my primary care doctor thought it was nothing.
@tigernike1
well if nothing else is clear you definitely need some new doctors. Have you thought about going to a dermatologist to see what he thinks about the skin eruptions that are appearing? You have an awful lot of peculiar symptoms.
Since you live in Arizona have you considered going to the mayo clinic in Scottsdale?
Jake
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1 ReactionI’m not sure how I could get in to Mayo. I tried scheduling an appointment in February but was told by the scheduling person that they don’t accept Medicaid.
As for the dermatologist, my (clown) PCP told me he refuses to refer me elsewhere on this. So I will need to see a new PCP, then get referred to a dermatologist.
@tigernike1 That's what I suggested you to see a Infectious disease Dr. or go to the E.R. now dont put this off
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1 ReactionYeah. I think the ER is the best route. I hate that I’m taking up resources during a pandemic, but I’m almost certain my PCP would not refer me to an infectious disease doctor. He would probably laugh at me and tell me to lose weight. My insurance requires me to see my PCP first before going to a specialist.