Numbness All Over: My story...

Posted by tigernike1 @tigernike1, Thu, Feb 20 9:57pm

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.

Hang in there! I, too, have problems with MRI's. Re the need to be sedated – is there not a support group or a church/minister who could accompany you to the MRI – you won't be sedated very long. Sounds like you really need to have it! Good luck

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@gloriajean

Hang in there! I, too, have problems with MRI's. Re the need to be sedated – is there not a support group or a church/minister who could accompany you to the MRI – you won't be sedated very long. Sounds like you really need to have it! Good luck

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I guess I could try to look for someone. I don't have many friends out here, and my family is all in Florida. I don't attend church. The hospital told me with their sedation, I could be out for as long as 6 hours. I'm very disappointed in my care I've received with that institution, and my doctor.

Liked by swift

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Something I didn't mention in my post, is the tremendous head pressure I have. Some days it feels like a vice around both sides and the back of my head. Other days just the back of my head, or the back and forehead.

The fact that everything is bilateral, and my cough is still going, and I have rashes appearing. I think it's an immune response. But my blood work was normal. And I'm gaining weight, not losing. I don't know…

Liked by swift

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@tigernike1

Something I didn't mention in my post, is the tremendous head pressure I have. Some days it feels like a vice around both sides and the back of my head. Other days just the back of my head, or the back and forehead.

The fact that everything is bilateral, and my cough is still going, and I have rashes appearing. I think it's an immune response. But my blood work was normal. And I'm gaining weight, not losing. I don't know…

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Ask them to test you you for Lyme Disease. I went two years and saw neurologists, cardiologists, rheumatologist and orthopedic Drs before being diagnosed. Please do your research online and be sure to bring a list of your symptoms along with articles on testing…

Liked by rwinney

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So I saw my GP today, and I’ve made the decision to look for a new GP. He was incredibly rude, and short tempered. I kinda knew he was an a-hole, but this really opened my eyes. First, he told me my rashes on my arms “weren’t big enough to concern me”. Then he spent 20 minutes telling me I was too fat, and that I’m looking for a “scapegoat for your symptoms”. He said being fat isn’t symptomatic of disease but lifestyle. I told him I wasn’t here to discuss weight, and that I was well aware I was fat. When I mentioned the cough he told me he thought I was “exaggerating the effects” of my asthma. Lastly I told him about my strong abdominal pain, and the yellow stools I have. He told me he’d order an ultrasound, but if it comes back clear, he said “I don’t want to see you again until you really have something wrong with you”. I asked for a MRI for my brain, per the ER doctor, and he said no then laughed it off.

Liked by rwinney, swift

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You poor thing! I hope Mayo can help, they are number one and I’ve read Arizona has a good neurological Dept. God bless you

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Hello @tigernike1, I would like to add my welcome to Connect along with the other members. I am so sorry you are having to go through such a struggle to find out what's going on with your health. From what you have said, if it were me, I would most definitely find another doctor. Mayo Clinic is very good at diagnosing difficult to diagnose health conditions. I don't know if it's an option for you but if you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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My heart goes out to you and hope that you can find out an answer that addresses all of your symptoms. I have a feeling that it is in your spinal column nerves. A good neurologist should be able to diagnose your problem, just make sure that they are good. As for a ride home, hire a neighbor or go to a senior center and ask there if someone would be able to take you and bring you home. Most senior are sympathetic to your plight. An MRI is a good idea for a start. I will say a prayer for you to find your answer.

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@tigernike1 Welcome to connect as with the other members. Im so sorry you are having all this trouble first of all I agree find another Dr who will take you seriously. Most or all of your symptoms sound like they didn't start till after you moved. Have you considered it maybe enviroumental . You can go to a allergist or dermatologist to find out if this maybe a factor . Your Dr was a ditts. With having yellow stools you may want to go to a Gastrologist Dr to have some testing done . I hope you get some answers The Mayo clinic in Phoenix surely can help you I would try to get an appt as John said. God bless you and keep us posted we here are a caring group and want to help however we can .

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@tigernike1

So I saw my GP today, and I’ve made the decision to look for a new GP. He was incredibly rude, and short tempered. I kinda knew he was an a-hole, but this really opened my eyes. First, he told me my rashes on my arms “weren’t big enough to concern me”. Then he spent 20 minutes telling me I was too fat, and that I’m looking for a “scapegoat for your symptoms”. He said being fat isn’t symptomatic of disease but lifestyle. I told him I wasn’t here to discuss weight, and that I was well aware I was fat. When I mentioned the cough he told me he thought I was “exaggerating the effects” of my asthma. Lastly I told him about my strong abdominal pain, and the yellow stools I have. He told me he’d order an ultrasound, but if it comes back clear, he said “I don’t want to see you again until you really have something wrong with you”. I asked for a MRI for my brain, per the ER doctor, and he said no then laughed it off.

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Hello and welcome to Connect. Indeed move on from this so-called doctor.
Rachel

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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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@lioness

@tigernike1 Welcome to connect as with the other members. Im so sorry you are having all this trouble first of all I agree find another Dr who will take you seriously. Most or all of your symptoms sound like they didn't start till after you moved. Have you considered it maybe enviroumental . You can go to a allergist or dermatologist to find out if this maybe a factor . Your Dr was a ditts. With having yellow stools you may want to go to a Gastrologist Dr to have some testing done . I hope you get some answers The Mayo clinic in Phoenix surely can help you I would try to get an appt as John said. God bless you and keep us posted we here are a caring group and want to help however we can .

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I 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

Liked by lioness

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Just 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.

Liked by swift

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@tigernike1

Just 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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@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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Good 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.

Liked by swift

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