Numbness All Over: My story...

Posted by tigernike1 @tigernike1, Feb 20, 2020

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.

@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?

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@johnhans

@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?

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@johnhans, it was the Phoenix location. I reached out to them online and they called me today.

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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.

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@tigernike1

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.

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@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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You 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.

Liked by Lisa Lucier

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@mikeoc

You 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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Thanks for your support. I just found out today the ultrasound was “clear”. Some enlargement in the spleen and liver but the doctor told me to “lose weight”. Sigh… I’m just about to give up and face the fact I will die soon. My legs are swollen almost 100% of the time with large pits in the same spot. My shoes don’t fit anymore, they’re too tight. I’m having coughing fits all the time. I was putting on deodorant the other day and my right armpit felt like I was shot. It still hurts to the touch, 4 days later. I still have a tremendous rash on my face encompassing my forehead, both cheeks, and my nose. I’m also catching myself drooling and spitting excessively throughout the day. I feel very tired and weak. I literally have to slap myself to wake up. (No, I’m not hurting myself. It’s the only thing that wakes me up. Tried hot water, loud noises, caffeine, sunlight, exercises. Nothing works). Still have trouble swallowing and feels like an ulcer or something in my throat. Still feel dizzy as heck with pressure all over my head.

Yet the doctor insists I’m “normal”. He told me to get a job. How the *bleep* can I work if I can’t even put on shoes?!?

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I think I’m going to go to an ER and go off.

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So I reread my message. My GP says “nothing’s wrong”. However the notes by the radiologist in the diagnosis area said: “Hepatosplenomegaly“. I’ve seen results from previous imaging studies of mine that use the terms “patent”, “unremarkable”, “clear”, etc. This radiologist did not say that. Could be semantics, who knows. All I know is my health is getting worse by the weeks. Very very frustrated. Please excuse my comments earlier as I was very disappointed. I do greatly apologize.

Liked by Lisa Lucier, swift

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@tigernike1

So I reread my message. My GP says “nothing’s wrong”. However the notes by the radiologist in the diagnosis area said: “Hepatosplenomegaly“. I’ve seen results from previous imaging studies of mine that use the terms “patent”, “unremarkable”, “clear”, etc. This radiologist did not say that. Could be semantics, who knows. All I know is my health is getting worse by the weeks. Very very frustrated. Please excuse my comments earlier as I was very disappointed. I do greatly apologize.

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@tigermike With all you have you should be seeing a specialist not just a G.P You have the right to get a 2nd opinion if your Dr isn't helping you figure out what is wrong with you . Id see a Endocrinologist to make sure your hormones are normal , Rheumologist also . You didn't say what Dr.s your seeing so Im assuming its just your PCP. Mayo clinic can diagnose if you can get to one or a university hospital close to you .

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@lioness

@tigermike With all you have you should be seeing a specialist not just a G.P You have the right to get a 2nd opinion if your Dr isn't helping you figure out what is wrong with you . Id see a Endocrinologist to make sure your hormones are normal , Rheumologist also . You didn't say what Dr.s your seeing so Im assuming its just your PCP. Mayo clinic can diagnose if you can get to one or a university hospital close to you .

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Yeah my doctor is a pain in the *bleep*. I’ve been wanting to leave him for a while now. Unfortunately I tried to get a second opinion at Mayo but the Phoenix hospital doesn’t accept Medicaid. There is a University Hospital in downtown Phoenix, but I’m not sure what their specialty is.

I was referred to a neurologist way back in mid December, and had to wait 8 weeks to be seen. I had a nerve conduction study done two weeks ago and still don’t have the results.

I’m not really sure how to proceed. I will call the Medicaid provider tomorrow to see what the policy is for second opinions.

Liked by Lisa Lucier, lioness

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@tigernike1 Good Im glad you are taken matters into your own hands . I don't see why you cant persue another Dr. Let us know how it is going with you .

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sorry to hear about all your problems. I understand about all test coming back negative. I have Fibromyalgia, had a small stroke, my right foot leg goes numb said to be poor circulation and compression socks do help but numb around mouth/nose no help and it is not all time. I had a rash on both forearms itching very bad tiny bumps then spread to area raised spot with clear white little drainage. Tried lotions, creams, antibiotics, a skin biopsy with no treatments working or answers from doctors. I thought the rash was shingles doctors said no because it was both arms and no place else. A friend thought I got poison eve and said take a shower head to toe with orginal Dawn dish soap. For 88 cents couldnt go wrong and they treat wild life animals with it couldn't do much harm. After one shower itching was reduced-more showers it began to dried up and disappeared. Sorry this got long. Good Luck at finding anwers.

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@leslon

sorry to hear about all your problems. I understand about all test coming back negative. I have Fibromyalgia, had a small stroke, my right foot leg goes numb said to be poor circulation and compression socks do help but numb around mouth/nose no help and it is not all time. I had a rash on both forearms itching very bad tiny bumps then spread to area raised spot with clear white little drainage. Tried lotions, creams, antibiotics, a skin biopsy with no treatments working or answers from doctors. I thought the rash was shingles doctors said no because it was both arms and no place else. A friend thought I got poison eve and said take a shower head to toe with orginal Dawn dish soap. For 88 cents couldnt go wrong and they treat wild life animals with it couldn't do much harm. After one shower itching was reduced-more showers it began to dried up and disappeared. Sorry this got long. Good Luck at finding anwers.

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@leslon. That is interesting about Dawn dish soap . I,ll have to keep that in mind . Thanks for that info.

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@tigernike1 the hepatosplenomegaly is what you said you were told by the doctor. It is an enlargement of the liver and spleen. Since the liver is important to you then I would think that would be important enough to look into. I am not a doctor so cannot say it should be, but I would think, like suggested by others, a second opinion would be good. Thank you for keeping us updated, and thank you for not giving up on finding an answer to your questions.

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I am so sorry about your state of health and medicines trivialization of your symptoms. Arizona has a lot of particulate matter in the air: with dirt and sand high on the scale. I have seen some of your symptoms in a few patients with toxoplasmosis,. a spore that is inhaled. Had one patient that had to be tied down when he began to shake. The bed literally slid across the room. MD's knowledge base is based on their education which is frequently funded by agencies with ties to drug companies. Don't get depressed, get angry. MD's are not the last word in health,, an ever changing dynamic state. They tend to be reductionist, narrowing down symptoms to a particular system. instead of a holistic approach. Food for thought:Here is a true story that occurred many years ago
a patient came in complaining about debilitating abdominal pain. He was tested and treated with no improvement and finally succumbed to an exploratory surgery, They found a large hairball in his system. The man was a furrier sewing fur coats by hand for many years. He had a habit of licking his fingers to keep them from slipping on the fur!

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