Discussions By Condition: Medical Stories

7 years of ***l and reality hits.

Posted In: Medical Stories 2 Replies
  • Posted By: wolfeptco
  • December 29, 2009
  • 11:31 PM

I'll try to be short, but it's so hard to explain it all. Seven years ago at age 37 I was in rather perfect health. I fell and crushed my elbow having surgery and pins. About a month later my elbow went nuts, was red and inflamed. Doctor said it looked infected. It felt on fire. This went on for a month. Went back once and was put on some meds. It was getting time to pull the staples out, but they hurt so bad I pulled them out. The first one I had to yank and I blacked out. Didn't hurt, wasn't scared, just blacked out.

A few day later my ears started ringing and I started getting hard chills. I dealt with terrible pain for another month. Doctors just acted like I was a nut. They did a MRI to check for bone infection, ect.. But my elbow was on fire.

Finally I felt like I was having a heart attack, severe pain in my arm. Went to hospital, they did test, thought they saw something and did a cath through my groin which was clear. My GP also did a CT of my chest..also clear. Told I was probably stressed and put on ativan...never was stressed until the problems. Had been remodeling the house and working long hours, so thought maybe the attack was stress, course just had surgery, ect...but felt no different on stress meds.

Hard to remember it all, but weeks later I got severe pain in my groin..terrible, thought it may be the cath, checked told it was fine. The pain spread to my privates. I then started having tingling in my left hand..same side as elbow and also in my feet. Sent to a Uro for the pain in my groin and privates. He said these things just happen to us young men, give it time. Pain got much worse and my left foot became painful. My skin started feeling weird, mild dizziness.

Knowing something wasn't right, saw GP several times, lot's of blood work.
The pain in my groin and privates, hands, feet, skin worsened. Usually told I was stressed or basically a nut..I knew better.

Finally the Uro does a CT of my groin. It was clear, but it picked up swollen spleen, liver, nodes and a lung nodule. They then did a upper to get the full picture and found two more lung nodules, liver spots. Told that they would just have to scan these every 3 months for cancer for 2 years. Stange, a CT just a few months previous was clear. Ran a low grade fever for almost two years.

Still, pain spread. I got severe chills. My skin on my torso started feeling cold to the touch, but sunburned..and the other crap. I get severe chills anytime I exert, like pushing to pee, poop, ect..like someone scratching their nails on a blackboard. Sometimes they get stuck for hours.. Dizziness bad. Finally saw Neuro, did CT of brain...clear. Started chasing Doctors...stressed, depressants, ect. Finally say a Neuro that did nerve studies and told I had neuropathy...Like why all of this right after surgery.

Tried to find the cause of neuropathy...unknown. Still, she said my chills, burning skin, dizziness wasn't neuropathy. Finally went to a med school.
What a joke. He spent 10 minutes with me and said I didn't have neuropathy, but couldn't explain the nerve studies and would send my neuro his opinion. He seemed mad that I got in without a referral. I told him that I made the appt, they took me and I wasn't there for a second opinion...Also by now muscle fasiculations all over my body. He just said they were beneign, even though he never looked.

I just tried to live with it for a year or so. By then my skin would go ice cold to the touch, but I couldn't feel it, people just said I was like ice, it felt like the worse sunburn. I couldn't touch my skin without almost screaming, mostly in my left arm through my torso area. Finally lost my job of 20 years...tried working for myself.

Finally went to Mayo. Not much of a visit, you see a resident. The Neuro came in and poke around making my body go into chills. He did feel my ice cold skin. They scheduled many test. He said they would do them that week as I lived 4 states away and couldn't afford to stay there long. I got my schedule and all my test were scattered over three months. I begged to no avail. I didn't have the money to go back. He said he thought something called RSD. I just figured I would get the test done at home. I talked with my Neuro and she said there was no such thing as RSD, so gave up on that.

Time passed. I basically couldn't function, worked what I could. My wife is already disabled from four operations. When the economy went bad, my illness whatever it was became too much and I lost my little business. Bills piled up. I lived off my savings and wifes LTD.

My wife on LTD for 8 years totally disabled with a never to return to work status. UNUM offered her a payout. Somehow in accepting it she agreed to a Function test. Basically it says what your capable of or if you're disabled. She met a 25 year old PT sent by UNUM. I took her. He bullied her through most of the test, telling her she could do more. She tried to do more..when she quit, he would say you're not giving an effort and do one more....crawl on the floor, pick up beads, walk on treadmill. I finally told him when she said it was too much pain, she should be able to stop. He just told me if I interfered they would have to redo the test another time. In the end, based on his test UNUM said my wife could work, denied her LTD. We couldnt afford Cobra and lost our medical care. All her Doctors have her totally disabled, yet a physical therapist can overrule them..All we can do is appeal.

I tried to draw my LTD...paid for it for 20 years, but the past year I had lived off my savings. They pay it based on the recent last quarter. I had no last quarter because I hadn't worked, so I was denied. I was denied unemployment for the same reason.

We fell behind on our bills. I owe 7 years on my home, but only real bill. We've tried hard. We have no relatives to live with, nothing. They will foreclose in 10 days and I can't stop them. We have a 13 year old son.
We're faced with living in the street.

We both lost our Doctors now because of no insurance. We are trying to appeal UNUMs crap, but need our Doctor's to help, but they won't see us without insurance. We'll do her appeal ourselves, but without her Doctor helping us I'm sure they will deny again. She was basically scammed and robbed.

I guess I'll never figure out what's wrong with me. I just know I have severe pain in my feet. They often swell, my toenails have cracked and split, some so brittle I just push and they shatter. My skin gets ice cold, but I feel on fire. If this is some stress process, I don't know how to undo it. I don't think it is. I almost feel my only choice left is to take my life so my family will have my SS income. No way we can live on the street. I don't want to die, but I have no quality of life and the system doesn't care. In fact, no one wants to live more than I..I love my family. I feel I
am taking them down with me. My wife won't leave me. Still, I have moments of almost insanity to where I almost do. Maybe it's just a comfort to know I can, but I fear I will. I'll never discuss it with a Doctor again, because instead of helping you with your problems, they would throw you in the nut house. My GP believes me, he's tried to help, but just at a loss.

I'm selling everything I own to try and get the 5K to keep my house out of foreclosure, but not gonna make it. Still, not sure what we would do after that except I would have to find someone to hire me or work. We use to show dogs all over the USA and have a few lines left, trying to figure some business with dogs, but out of time. I probably take enough pain killers that would kill a cow. I can seldom sleep, but always tired.

The pain of watching my family suffer is terrible. The emotional pain is worse than the physical. Just to think several years ago we were an above average middle class so very happy. It's like a nightmare.

I just don't understand Doctor's or how insurance companies can do the things they do. I really have no clue what I have, neuropathy, RSD, something else....I'll never know.

Has anyone ever had ice cold skin throughout torso down just spreads. It feels like hot grease to me. I can't even stand to take a shower when it's bad. I can't accept this is in my head. My current Neuro is stupid. The last visit I told her.."if this is neuropathy, it's getting bad." She said.."You don't have Neuropathy" I asked her why she was giving my methodone, oxy's, hydro, lyrica, ect...She looked through her file..and "Oh, I see we did dx you with that when you first came"...Seen her for 7 years and most the time she doesn't know who I am. For a few years I wouldn't complain to her cause she would say .."just don't stress". As it got worse I complained, but she could care less, just two minute visits and out the door. Still, 4 Neuros' don't seem to agree on what I may or may not have.
My GP thinks maybe a virus attacked me because of my scans and fever, but why after breaking an elbow......

Sorry so long...It's just hopeless now. I just want my family to have a way to survive.

Please, if you have LTD, ect...read your policy. I had no clue I had to have a recent pay quarter to draw it. I thought I did the right thing by living off savings and trying to work, but that stopped my LTD.

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2 Replies:

  • Not much to say but I am sorry for you and your wife. You need to visit the local Welfare office and get a Social Worker to be assigned. Handling your own affairs with your present physical/medical condition will not produce a good outcome. Hope for a better future for you.
    MattB4 53 Replies
    • December 31, 2009
    • 06:54 PM
    • 0
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  • I'm going through something similar, oddly . . . though I don't know how long I've been affected, and the worst of it certainly hasn't been seven years.I've never been one to have a "typical" illness, or a "normal" medical presentation. One of my physicians explained a teaching phrase used in medical schools, to caution students to look for the norm: they're told that, if they hear hooves, they should not look for a zebra. That is, to expect a horse, and not let their imaginations run away with them. "You're a zebra," my physician told me. (Hence, my screen name.)As a result, I've had to learn to advocate for myself, as a patient. The majority of allopathic (mainstream) practitioners will not look for the fifth or fifteenth variable it will take, to find the right diagnosis for me.Over the last 18 months, I've slowly lost the ability to walk properly. That started with a blister on one foot that didn't heal. Eventually, I had ulcerations on every toe of both feet. That led to unhealed open sores. The best my PCP could manage has been a prescription for oral antibiotics . . . and I only still have that prescription, because I develop red lines up my legs, denoting infection, if I stop the antibiotics, so I threatened to sue, if I were taken off that small bit of treatment.The pain of the sores and ulcers is burning. Though I have a tremendously high tolerance for pain, this is not a sensation I can ignore, and the prescriptions for pain killers don't begin to quell it. I can't bear to have even a sheet touch my feet—and yes, water burns me. Showering is a hideous experience, daily.I began with a podiatrist, who was confused by the ulcers, and sent me for a CBC. That led to interest in a Venus study, for which I saw a vascular surgeon. There are no problems with my veins or circulation. I am not diabetic. My heart has been tested repeatedly; there are no cardiovascular issues. I was sent for nuclear imaging, to rule out osteomyelitis (bone cancer), and was cleared for that. Meanwhile, I've developed tremors, and can barely function, within an hour after awakening, due to the fatigue. I am constantly cold but, in the summer months, could not bear to be in direct sunlight. I've developed vaginal bleeding, severe abdominal pain, and increased aphasia (loss of language).Continuing to do my own research, I found that ALL my symptoms are explained by autoimmune disease. I cannot say which one, for a certainty, as there is much overlap. I made an appointment with a highly respected autoimmune center. There, I was seen by a PA, who did not listen to what I was trying to tell her. She observed only my feet, and determined the problem to be vascular. When I demanded to see a physician, she brought in the head of the department, but relayed her views to him, without including the additional symptoms. He therefore agreed the condition was vascular.I actually bet the man he was wrong. He laughed, and said he'd prove he was right.He lost that bet . . . but I paid the price: he only tested for the vascular disease (Venus, again), and for lupus. He did not test for any other autoimmune disorders or diseases, so convinced was he of his own diagnosis. I am now left to find a team of physicians willing to work comprehensively toward reviewing my case with an open mind, and who will take a medical history from me, rather than making one for me.Your symptoms are not exactly parallel to mine, but they're disparate enough to warrant checking into autoimmune disorders and diseases. Please have someone help you with your own research, so you're able to be conversant with any further practitioners. I've come to believe that, if we do not advocate for ourselves, the rule of the least common denominator applies, and those of us with more complex diagnoses are shunted aside . . . unless we are of the very upper class, who pay physicians (and attorneys) to advocate for them. As goes the housing and LTD, perhaps with the new stimulus funds in every state, there is a way for you to recoup at least some of your losses.I am deeply aggrieved at what has transpired in your situation. Do keep listening to yourself, and don't lose hope.To a new decade, and renewed spirit,Zebra
    zebrapatient 1 Replies
    • January 2, 2010
    • 02:26 AM
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